The Geeky Goddess

i want to be positive here

2011-07-01T22:10:00.001-07:00

I have friends who think I'm a positive influence, and that I bring joy to their lives.

Why does that statement not make ANY sense to me? I'm sorry I've been such a negative person lately. Its just this latest tragedy compounds my freaking life. I mean, yeah, I'm in grief etc about my kidneys but someone I care about is not coming back and I just can't put that aside.

I've had a LOT of friends pass away, but only a handful have left such a profound mark on me. This one hurts considerably, and its like I can't get away from it. I tried being away from the internet for a few days. That didn't really pan out very well. I kept getting texts like "oh did you get that email I sent you" which turns into going onto facebook, twitter, etc. Then its dailylocal. I HATE YOU DAILYLOCAL and your horrible reporting skills, and your faceless twits that comment on your site.

When walking away from the service, we passed a newspaper jawn (for lack of better verbiage... KIOSK?!) anyway, one of the gentlemen I was with paused to look at it, while another said "Don't look brother, its just a trap." Which it is. Really.

And I'm really not saying that I'm a literary genius at all (hence using the word "jawn" every day, but I think thats more of a thing thats said in one of my groups, so yeah. whatever.), but the reporting is so sloppy, facts get skewed, the reporting seems to also have a slant/bias. So, unless its an obit, I'm not reading dailylocal anymore.

See, this is me trying to be positive... Well ok, I'll actually start here. New beginning.

Meghan's stroke was 3 years ago on next Wednesday. Sunday was 3 years that she went into the ER at AI with a stomach virus. (ugh, I think I just quoted a Smashing Pumpkins song. Slap me, k? thusly deleted) SO in that 3 years, we have had our ups and downs. But! I have a strong, amazing, pretty freaking independent, 4 year old (who is almost 5). And a 6 year old, who is also strong and amazing, in his own ways. He is so sweet and loves his momma (not that Meghan doesn't, obviously. Just that he's in Pittsburgh this weekend, I miss him and his sweet big hug before he left was awesome)
Even with the cards stacked against us, I guess we've pretty much triumphed? I mean, kidney failure isn't really a triumph, but I'm doing critical care at home, and even a lot of nurses don't know that you can do home hemo.

Speaking of, I got told by my nurse and doctor yesterday because I don't fax in my flow sheets after every treatment. something to the tune of "If you can't adhere to our facility's rules blablabla" yeah, woops. Going in center was discussed. No. Not happening. I hardly have the time to do it on my own time, let alone do it on someone elses.

Also, my hemoglobin is 13.8. thats high. I have to lay off the Epogen for awhile. Phosphorus was 5.7, but my potassium was not even mentioned. Hooray for dialyzing the night before clinic (Davita lab lost my blood somehow? idk what happened. its funny though, I was scrambling looking for tubes, I actually had to go to a lab to see if i could "buy" some tubes.) My calciums low, my PTH is high in accordance. I'm already on calcium and even tums. UGH

ok time to end this, i'm on dialysis and light headed...don't like this feeling =\

This week SUCKED

2011-06-23T19:01:00.000-07:00

And its not even over yet.

I'm not going to get into too many specifics, because if you know me, you probably know why (if you follow my twitter, you definitely do). I don't update facebook, but I read it, and comment. A lot. LOL

Anyway, so bad news on Monday, then Sean had a Medcheck and a resident in the building set off the fire alarm. Ugh. Patrick then went to the doctor, and I found out one of my favorite people in the world works at his doctors office now. So, that made me happy. OHHHH YEAH so Um, Pat's back gave out last week, and he went to the ER on Friday night. That was pointless. He can hardly walk. He's on a cane. Has a girdle. Got a cortisone shot that meant nothing apparently.

Fighting with financials right now. I'm on an extreme Money DIET. trying to trim that fat. I'm waiting on getting Social Security all figured out as soon as possible. I have to get my paystubs from July 2010-Jan 2011. Usually I keep them. I can't find them because... MY PURSE WAS STOLEN TWO MONTHS AGO. So annoyed. I thought I took them out of the little pocket of my wallet. wahhh

Got a letter thats trying to say that I didn't send in information about the kids for insurance, so they were going to try to cut that off. We can't have that happen.

BUT! This week has also been very productive, Sean's MT came out on Tuesday and helped me go through all his toys and helped with the parting process. Pat's dad came by and took FIVE boxes of toys to Goodwill last night. Today, she came over and we went through all his clothes. So now I have a huge bag of clothes that I'd give to my next door neighbor if she didn't move :P If nobody claims them, I may just take them to her parents, who still lives next door.

Um, I still hate dialysis. I broke the fax machine somehow. GO ME! So now I can't be yelled at about flowsheets until June 30th when I have clinic LOL I'm going to ask my nurse if I can go in on Monday and have a treatment there and then have my blood draws there as well. What else... Eh, I guess nothing. Today, I picked Meghan up from camp, and its so pretty there. I just hate having to travel through the true twin tunnels to get there. I have never been through them before. My mom had no idea of the stories of them, but they're kind of infamous. I've only lived here for... 23 years or something.

Oh, and whenever someone in Darby gets shot, I freak out because I'm afraid that either someone in my biofamily did it, or they were the ones getting shot. It was on the news... I need to write a book, but I can't ever have a real cohesive thought.

See, because I'm going off on another tangent. I got a few eye dusts from exposed organics in the mail yesterday and I'm in love! :D YAY local makeup

And my friend got really good news and that makes me happy for them. Ok, I'm off!

Friend Makin' Monday from @ashallann

2011-06-20T22:03:00.000-07:00

Its still Monday in California, where I have a LOT of friends. so this still counts as monday!

FMM: Yes or No?

Do you use coupons? No, but I really wish I had the time and motivation to do so. I am so nitpicky with my groceries and such, i am brand loyal (aka a dietcokehead)
Do you like football? I can't exactly say no. but I can't in good faith say YES (resoundingly! lol) I can follow it, and if a game is on, I'll get into it. I get the concept. Before I got sick, I knew stats and all of that, probably good enough to play ff, but... I'm too lazy?
Are you in a relationship? mmmhmmm oh so crazy in love. LOL
Is your phone always within arm’s reach? Generally. Unless it falls out of my pocketbook in my father in laws truck when taking Patrick to the ER. But I keep it around to keep the kids content as well. Sean is obsessed with Angry Birds.
Do you like thunderstorms? Unless they're the type that make my house flood, I don't mind them.
Can you cook? Yes, but do I? not as much as I'd like to. I love my le creuset, but I can't carry it because its too heavy. Dammit.
Are you – or have you – lost weight? I've basically been the same weight minus when I was pregnant or on prednisone. but I've always been about 47kg, or 100 pounds. I'm retaining water right now because of end stage renal failure so I am like 51kg, but my "dry weight" is literally now 47.5, and I'm not happy with that. I want it to be back to 45.7 like it was when I started.
Do you know how to read a map? Yes, but I prefer GPS or google maps.
Do you wear makeup? When my handbag was stolen.... most of my claim was makeup/brushes. about $800 worth. MAC addict. Haven't recouped everything because we are broke right now. and I am sad. I have my essentials though. I'm now on a makeup forever kick anyway. I neeeeeeeed their HD Primer and Foundation. Then I'd have like 5 foundations LOL (one i product tested for cover girl, MAC, Estee Lauder, Smashbox, and Chanel)
Do you read regularly? I haven't been reading books lately. But I read blogs. and twitter! fast paced life!
Are you publicly affectionate? Not really so much, but I'm cool with it. I used to be, so I don't hate on people who are. aww wahh. I miss those days.
Do you like picnics? I don’t think I’ve ever been on a picnic, I probably wouldn't though. I'm trying to think of some type of scenario that I WOULD like them. No. Nevermind. I hate the outside. Oh wait, does lunch on the beach count? my in laws do that and I was a part of that. I do not like picnics on the beach. Or anything on the beach all that much.
Do you have a/c? Central air ALWAYS
Have you ever been out of the country? Yes, but not too far away from it. I was going to move to Australia, but um, I cashed in my plane ticket to get married.
Do you know how to ride a bicycle? They say you never truly forget, but I'm the exception to every rule. So um. I'm gonna go with a no. It would be the death of me. As I may have said earlier, I hate the outdoors. I am an indoor chick.

This was fun :D I am going to do it again!!! I used to do this on livejournal all the time haha

Next Ranty Post soon, I promise

2011-06-20T20:51:00.000-07:00

But for now,

I’m posting this to enter a contest offered by Buy More Contacts at Uppercase Woman! I want to win theiPad 2! Enter to win here!

:D an iPad2 would make my life complete! LOL

Regret

2011-06-06T17:29:00.000-07:00

I love Samiam. I also love the song Capsized, but this is just seriously matching my mood right now.

Usually, aka before the surgery, on a day like today, I would just lock myself in my room and play my guitar and write some sobby music that I'd eventually forget (unless it had a really catchy hook) and be over it. Now, I just put two needles in my arm, and somehow the diseased blood is supposed to leave my body and come back all squeaky and clean.
That should be a really awesome metaphor, somehow, it misses the mark.

Anyway, so I had a down day. I'm having some down times. I owe Kim some blood work. Its going to come back crappy because I'm not eating as well as I should be. Especially since the Strawberry Festival was over the weekend. Potassium is a killer, y'all. Boo. Anyway, then there was the apparently infamous (because people are talking about it? wtf. Phoenixville? you and me are done professionally. please keep my name out of your mouth) Saturday night where I mixed some pinnacle whipped cream vodka with some premixed mango margarita crap because Heather did it and she said it tasted good. I HAD NO CLUE it had tequila in it. AND Mangoes are like, one of those top 15 foods that dialysis patients should avoid. Potassium, once again a KILLER. So yesterday was kinda a wash, I just layed around, watched tv with the kids, feeling like crap. Should have dialyzed, but didn't because it was my day off and I didn't feel like sticking myself.
God, I think I'm going to just do my EPO subcutaneously. I keep saying this, but I think I'm having an anemia problem. This is why my brain is not working quickly.
Anyway, back to the playing guitar. My dexterity is screwed up from the surgery. Thank god I'm not some like, renowned surgeon or anyone of any importance (that would use my left arm for anything) because CAREER ENDING. I mean, now i'll never be a late blooming rock star (BTW, while making a brady bunch joke, Christopher Knight and Adrianne Curry Broke up. Did ya hear about that???) So, my plans of world, chart topping domination, are thusly thwarted.
My split EP with ex Palecurve now Dead Rock Stars is shelved. Dammit. and it was going to be themed.

I guess its for the best, anyway. Wouldn't want Julie to get too used to mass adulation bahahahaha

tangents vs stream of conciousness

2011-05-27T18:12:00.000-07:00

I know that I talk. A lot. I can be shy, I can be reserved. I have been (Have you seen me act like this? you should take a picture and remind me)
Now, this is in part sparked by a conversation I had with the one we call White Jawn aka Brian the other night at the awesome party my friend had for the rapture. Anyway, he said that I'm the person who always wants to be friends with everyone, I want to know everything about everyone, and I want to help everyone (And yes, its true I once said "All this place needs is a can of paint and some sunshine when talking about Chester. for my non chesco/montco/delco readers who don't know what Chester is, take what you think about the worst neighborhood in Philadelphia and multiply by 10 or so) Now that we've laid down those tracks, and you know that I'm a naive...crazy person? I don't know. But anyway, then later in the week, Patrick (my lovely husband) told me that I wear my heart on my sleeve with friendships. And I totally see that. I don't know what in my subconcious wills me to do so, but I do.
Hooray for faults!
But back to the engaging. You know how theres a going trend in movies these days where theres a cute, quirky girl that immediately seems fascinating (usually played by the likes of Zooey Deschanel. damn those doe eyes.) or at least appears to be, then you get to the thick of it you find out this girl just has no god damn filter.
Yes. That is me.
Now I've REALLY been biting my tongue about one subject because I know I'll be the one to get hurt, and I can't get myself all involved in other peoples business. (I just know that the business is trouble. OMG Julie, just stop being such a CASSANDRA!!! its just what I do.)
But anyway, so its totally true that when I start into a friendship, I jump in with both feet. And I think that scares people. I've really been working on this. Dammit, why am I so socially awkward? Its not nurture or nature, its nature vs nurture, and its a deathmatch.
That was my whole intent, other than for medical issues (Look where that got me) that I ever went on my excursion to find my biofamily (oh, and I got them. in spades.)
But its so easy to get immersed into any of their drama. And its so difficult to just give up on people, because i really try to see their good sides, et al. Buttttttttt As everyone says People don't really change, they just manipulate the picture you're looking at. (People don't really say that. at least I don't think they do? If they do then shit, props where its due)

oh, and I procrastinate a lot. I'm going to do this here. Maybe until tomrrow when I'm going to be on dialysis for 3+ hours and have nothing to do but be pensive.
Also, the new prescription 4 days a week? Has made me really an emotional wreck. Dear benzos, please keep my anxiety at a tolerable level, that is what you are made to do. peas, thank you, and mucho amore, jules xo

Dialysis Day 3 Video

2011-03-10T10:52:00.000-08:00

Because I'm vain. but Dialysis kinda sucks y'all. I just had a bad day because my access (graft) is really narrow and I'm using a larger gauge needle. And I'm having transportation issues.

I want to go to sleep. I have 26 minutes left on the machine, but then another 45 minutes or so of breaking down, cleaning, holding down gauze so I don't bleed out.

I guess I should feel good because a resident or fellow or something looked at my chart and didn't believe I am how old I am because I look so young. IDK, that goes back and forth.

Next Chapter.... feeling better. Soon. Hopefully.

PS Ashleigh is so sweet, she sent me a vase of flowers. I haven't seen them yet. Can't wait to get home to see them <3

taken straight from comments. update on Meghan

2011-02-13T22:51:00.000-08:00

Well, yesterday, Meghan and I both woke up with a queasy tummy, but I took Zofran as to keep myself from vomiting. She did vomit, but was completely happy otherwise. I mean, we've had so many GI problems with her, it wasn't surprising, you know?
So, I went to lunch with a group of friends, after lunch we were going to the mall, en route, my friend had to pull over because I lost my lunch... (When we got to the mall, I went straight to the maternity store to get these things called preggie pops to try to calm my stomach, seriously)
So, we're at the mall for awhile, and I get a frantic call from my mom "COME HOME NOW MEGHANS SEIZING" and she hung up. I was freaking out, so my friend pulled extreme die hard moves to get me to our local hospital (chester county) from king of prussia. I was dropped off even before the ambulance had arrived. (My mom works in that ER and her coworker didn't even recognize me, I was freaking out that bad)

She spiked a fever *out of nowhere* she was up and playing one minute, and then all of a sudden she began seizing. The first seizure went on for about 10-15 minutes. She came too right around the time the EMTs arrived.
Pat rode in the ambulance with her, and she began to seize again en route. They pushed 2mg Ativan, she was OUT. When we saw her at Chester County, you could tell she was post ichtal, plus the Ativan (that amount for such a small child did honestly freak me out. I'm prescribed .5 PRN for when I have crazy doctor appointments and just life in general...

Her CT of her head and her chest x-ray were clear. She wasn't responding (probably because of the Ativan), so they were talking about doing an LP (i hate the phrase spinal tap...), but she then groggily asked for the cartoon network.

They took her to Childrens in Philly, she was immediately put onto the service of Neurology. The stroke clinic Neurologist, Dr Ichord (Meghans personal Neurologist), just happens to be at a symposium out in San Francisco or somewhere out there)
Doctors ordered an EEG today, but we haven't seen/heard anything about results.

(I'm going to write about what else we saw the passed couple days in another comment, btw, I'm afraid its going to cut me off)

Today she was having issues with being wobbly when walking, her eyelids were "heavy" (one was "drooping" more than the other), she was having issues walking (verbalized she was dizzy), and she is talking out of one side of her mouth. If you look at the picture I posted, you'll see we were having trouble getting her to create a smile that was bilateral.
And you've seen Meghan outside of the hospital. She is ALWAYS smiling.
She also was somewhat cranky, she was saying she felt better, but then also complained her knee and ankle hurt.
She has an MRI in the AM, I'm hoping its clear, but I want answers. Seriously, doctors seem to look at my kid and throw their arms up in the air, or they are so so quizzical about everything for their own sake.
Another thing, she wears an allergy bracelet, She gets the WORST rashes (not just hives, but blisters up). I told them this, its well documented.
I wasn't there when they were doing the IV. They told Pat that it was hypoallergenic tape. Nope. Fail. Exactly what she's allergic to. I asked for Hy-tape, 3M micropore, or 3M tegaderm. I have the same issues, so I know what to do, you know?
I can't sleep at the hospital because my arm is in SO much pain from the surgery. There is no way I can sleep in a chair/on a couch.
I actually asked if they'd ruled out meningitis, and they tapdanced the issue. Patrick says "they" (any medical personnel) tapdance around all of the issues. I feel like we've gotten straight forward answers. Which are all pretty much still "we don't know" right now, but its actually a better situation than while she was at AI because they just kept naming it different things. and by there THEY means residents. They all seem to be terrified of the attending, but want to suck up and get the best differential diagnosis.
So so so frustrating.

precursor aka, earlier this week...

So, on Tuesday night, Meghan was walking around our living room like normal, when her left leg gave out. I wrote a note to her teacher/ physical therapist. She wrote back, saying that she'd noticed left sided weakness of both the arm and leg for a couple weeks (wish I would have noticed that sooner)
I was at Penn all day Wednesday because I saw my vascular surgeon and nephrologist. (Graft is good to go, just have to get the OK from the insurance company to start training for dialysis)
Anyway, because of these two things, I took her to her regular pediatrician, Dr Faber, on Thursday. He loves her, and she loves him. He is in such awe about how well she has bounced back from the stroke.
He said that her weakness was inconsistent, and couldn't tell if she was just being silly. He was concerned that she may have suffered a TIA (transient ischemic attack. aka: mini stroke), so I guess we'll find out from the MRI tomorrow.
*sigh* that was a lot of information and thats emotionally exhausting.
We see the stroke clinic on 3/11. I would really love to see if we can get a PT do a visit to Meghan before the MRI... I have to remember to ask them if thats possible.
Maybe I'll have Pat write that on the board...

whirlwind

2011-01-23T18:34:00.000-08:00

that is the only word i can use to describe my life over the passed 2 months.

My kidney disease has progressed to end stage renal failure (Stage V). I've been in and out of doctors, hospitals, etc.

10 days ago, I had to have a graft surgically placed into my upper left arm to prepare me for hemodialysis. I've chosen home hemo as my modality. This will let me have dialysis on my own terms, my own time. I chose hemo as opposed to peritoneal because I'd much rather not have a catheter in my stomach that is susceptible to infection... and i wouldn't be allowed to take baths or go swimming ever again. (or hot tub) Also, I'm not scared of needles.
Doing it at home also gives me freedom to feel better. Studies prove that any home modality increases quality, and quantity of life. By doing the treatments at home, I have chosen to dialyze more often. If you are an in center patient, you usually go about 3 times a week. With home, you usually have treatments at least 10 times in a two week period. This keeps all of your blood levels at a consistent level, instead of having peaks and valleys. You feel like crap when your body is filled with toxins (duh) because your body can't filter them, then you go and do a 4 hour long (as opposed to home that is about 2, maybe 2.5) treatment, and your blood is clean, but then you feel like crap because it is so taxing on the body.

I don't want to say "OMG SO EXCITED" to start dialysis. But, I AM excited to feel better, and accept that this is something I have to do to get there.

Then theres the topic of transplantation.
This is not something that I really am talking about, though it us my ultimate goal (well, it has to be, its supposed to be. i'm terrified of it though).
I went to University of Penn's transplant center on Dec 29 for an intake. Longest day of my life. Started it off with a great, traffic free drive into town. My appt was at 9:20, my mother and I arrived right around 8. (I wanted to be early, but not THAT early) I met with a transplant nurse, who explained the process to me, then a transplant doctor, who went more in depth, and went over my medical history with a fine toothed comb.
Next part of the day was orientation. well, that was after 16 vials of blood were stolen from me. They blew a vein on the first try. The gauge of needle was larger than my vein (this will be talked about later in the post. See: Vascular Mapping lol) and it blew, but they couldn't use a 21 gauge like they usually do because they had such a large volume to draw.

Met with a nutritionist who told me that pretty much my diet sucks. Now, I would understand that if I told her how I truly eat. Potatoes potatoes tomatoes potatoes and um... Well, no. I really do eat salads like crazy. I just like my French dressing. You would think "Oh, Mayonnaise is badbadbad." Nope, its not the mayo, its the ketchup. Tomatoes are too high in potassium. Potatoes are too high in potassium.
My whole diet is too high in it.
Instead of giving me options of what I can eat, I was basically berated for what I do eat, and all the things I *SHOULDN'T* eat. Scared the crap out of me. and at least 5 pounds.
I did learn a new word that day. Hyperkalemia. Meaning, "You have too much potassium in your blood, dammit, and this is why you feel like crap, can't walk straight, and have blurry vision."
I had to take a really evil medication called Kaylexolate (sp?) To give you an accurate representation of this medication: "It tastes like butterscotch and glass shards", and the volume I had to take... 120 mL. one mL is a teaspoon. I have a million plastic syringes in the 20ml size (largest that would fit in the bottle), it took 6 for one dose. I staggered them. I'm not exaggerating when I say it was horrible. =(
My blood pressure was actually controlled by my medication, I was at 100mg Losartan Potassium. WHY am I on a medication... Ok, not even going there. But, I had to cut my BP med in half. Now my BP is not controlled.
Love my life.

Ok, thats all I'm going to write right now because I'm just getting upset rehashing it. (and i apologize for the lack of capitalization/grammar... i'm writing off the top my head/heart)

15 minute quick update

2010-11-25T22:22:00.000-08:00

omg y'all i can't believe i'm updating.
just to think, i used to update my livejournal like 4 times a day and was all weird and gushy and stupid. but i didn't CARE. now i'm like "oh god, i care about context and content"

halloween, i was flo the progressive chick. that was pretty awesome. i was happy with it. got a lot of "wow, you really look like her"
Then I went to my conference for work and kept getting mocked for my red lipstick. Dammit, that red lipstick was really awesome for me at that point in time. it was a self esteem boost and i rocked it, so whatever. And it was perfect for my flo costume. so there. (MAC Ruby Woo, you're awesome!)

backing up a bit, 10/20 i was told I'm at 22% kidney function. at 20% I get to be on a regional registry. Or as many regional registries as I want. Or someone could totally want to be a live donor and I can test them at that point. A+ blood type!
I've had a couple awesome friends and family offer to get themselves tested. I'm excited. But! a transplant is not a cure, its just a treatment. Like dialysis. Just less shitty than dialysis.

What else is going on in life... Seans doing WONDERFULLY in kindergarten. He has a TSS from 8-12 at school every day. Love her. Love his teacher. Love his entire team. He got a DS for his birthday, he's obsessed with the thing.

Meghan is loving preschool. She is so hysterical. Last night she told me she wants a giant bed for christmas. She has finally found dollies and loves them.

My thought process right now. Twitter has killed my blogging brain. If Ginsberg had a twitter, he would probably have stopped publishing.

What have I been twittering about? oh man, idk. i have these long windeded witty banters with friends that i end up deleting because I'm too embarrassed / don't want other people reading my personal conversations (then why post them in a quasi public forum, Jules. BTW, yes. call me Jules. Eventually it happens, but a lot of people have stopped. its WEIRD)

Hmmm Oh! I saw my dad. Well, I stopped to see my dad in the house I grew up in. I brought my daughter that he's seen twice in her life to the house that I grew up in to give her a "tour". He has an obsession with Santa. First thing he did was usher her to a print of Santa "You know who this is?" and shes like "no...." and runs to a picture of a bald eagle and yells "EAGLE!!!" The kid is obsessed with the Eagles. And the bird as well. Anyway, the whole exchange was like, an hour long. We discussed health (he's always got some crazy ailment, but he only had good news. and seemed to have lost at least a stone and a half, maybe two? he said only 3kg, recently, but I guess in the 2 year interim that would add up.)
I did come to realize something. My house may be cluttered, my house may have kids pictures all over the doors, glitter paint stains on the floor, and at least a laundry basket or two to be put away. But I would rather my house look *lived in* than be a mortuarial (yes, i coin my own terms) hollow faux museum. A home rather than a shell. Not saying that I grew up in a clean house. My dad collects collections that collect dust. I've been saying that lately. Its the truth. But the childhood that I grew up with was a farce.
Yes, I'm a girl with daddy issues. We all have our baggage, cross to bear, say it how you will.
The way we left it was "Heres my number, call me if you want. Or don't." and he asked if my mother would object, and I said "I'm an adult, I'm not concerned. I would just rather if we are to get together and you see my children, we have it in a public place."

la la la blablabla, let me look at the twitter to see what i've said lately.
my love for wawa
the launch of the winter 2010/11 glamour kills line that will be up today. (shoutout to @jensenclan88
thanking all the people who were jerks to me growing up so i could become the awesome person i am today
oh, Seans bus driver made some crazy remarks regarding the children on the bus. I was upset about that.
"Ok, you realize that Starbucks is NOT a food group, right?"
a lot about the real housewives of beverly hills. and dc. can't stand camille or michaele.
"i want britney's handbag here. really badly. (taking my mind off the election) http://i56.tinypic.com/vcw7qx.jpg"
"my subconscious is a weird wacky and sometimes, a somewhat wonderful place to be...." (which came after a deleted conversation about dreams i had with my friends in it.)

Oh, and I've been fighting off a plague for the passed 10 or so days. before that Meghan was sick, before that, Sean had strep.
And I have an epic story to tell you. But you have to ask me. I am not going to post it online lol

that was more like a 32 minute blog post. I'm going to go to bed watching this movie with Steve Martin, Meryl Streep, and Alec Baldwin.
I have a smirk on my face, and I can't even explain it lol I want Alec Baldwin to be... in my family. idk. I just know that if I ever needed someone to be a voiceover for my VH1 behind the music? Yeah, I want it to be him.

my so called life

2010-09-12T19:40:00.001-07:00

see, i said i'd do it. i'm transferring all that stuff i said on twitter to here. because i'm angsty, and i feel like it.

So, you may have heard this part already. But I may elaborate. Depends on how I feel soon LOL

Jordan Leto is trending on twitter. So I decided to "re-hash" those angsty teenage feelings.
Here is my timeline LOL

I had a Jordan Catalano. Only he was blond, wasn't in a band, & didn't invite me to shows. Also, I was too geeky to have a "thing" with him.

I also had a Rayanne Graff, who made my life a living hell. My Rickie died, and my Sharon is a pediatric cardiac surgeon.

one more thing, I met Juliana Hatfield (twice) and she was a rockstar, not a homeless girl. And I gave her a mix cd. She said it was cool.

that show literally mirrored my life. I should write a blog entry about it instead of littering twitter.

I doubt any of the people referenced will read this, so I feel safe publishing it in a public forum LOL I'm glad I ended that on a pretty ok note because Yeah, I met Juliana Hatfield. and I've met some pretty awesome celebrities, I guess. Its all good. So yeah, but Juliana is the ONLY one I've ever been like gaga over. I was sooo nervous. First time I met her was at a Lemonheads show. She was playing bass for them. I couldn't talk. SECOND time, I came prepared, made her that mix cd (which was pretty freaking awesome, but you know, not many people like my brand (tm) of awesome music...) I made an elaborate track list page, etc. She took the cd from my trembling hands, as I was trying to fumble out the words "I m-m-m..." she finishes my sentence "made this for me? thanks..." and then walks away toward her cabinet, then comes back after looking at it and told me it was a cool mix and she liked it.
That made my life right there. Too bad I didn't enjoy the show. Some Girls weren't as good as Juliana solo or Juliana 3. Though, Almost True is pretty much one of my favorite songs in the entire world.
If I had it, I'd attach it.

I may update with more later, but something has taken my attention away from the computer... lol sorry for the random weird update.

New York state of mind

2010-08-31T18:42:00.000-07:00

Ok! So I used to actually have that be the title of most of my old blogs entries.... lol
*sigh*

I'm going to start by saying that I really believe I'm meant to live in new york, it brings the best out of me. I was discussing with another parent how my dream was to move to Lynbrook, on Long Island.
Yeah. I had high aspirations! anyway. On to the story of my day

Preface with yesterday because again, it was productive.
Sean got on the bus, and as I was leaving for work, I received a phonecall from CHOP exton to schedule his EKG. Yay. Thursday is the date for *everything* IFSP meeting, EKG, and then his psychiatric evaluation.
I'm happy his psych eval is after all of that because that will hopefully help produce a day/time where he is ... transitioning, having difficulties. YAY
So I worked, really good day at work, got out at 2, stopped at the peds office for a referral and script for the EKG, dropped that off at CHOP Exton. Oh, and to pick up Seans Adderall script (which maybe thursday he'll be taken off of? can I get a prayer for that? thanks)
THEN! it was to the mecca of consumerism, aka Target. I had to get Meghans prescriptions compounded, so I knew I was stuck there for awhile. But! Thats ok, because I saw two of my favorite people who are both like 33 weeks pregnant. :D Was nice to talk to them.
picked up a dry erase board, hopefully to help organize this family's events! LOL I also had previously picked up a classroom calendar and had it laminated for dry erase usage.
that was my day, I guess. I mean, on top of that, I want to throw my phone into the hudson river right about now. oh look, theres the hudson. I'm gonna dooooo it! LOL

Last night though, I was getting a little jittery about my trip this morning. I couldn't find Sean's gym uniform for today, was freaking out about everything....Didn't get to sleep until... well, before 2. had to get up at like, 6. My mom was freaking out this morning because the coffee pot (don't buy cuisinart people!!! BUY CAPRESSO MT500 if you can find it. the MT600 is nice, as well) apparently spilled everywhere...this is what I woke up to. I literally sped out of the house to Wawa and got her a 21oz cup of coffee to get the day started LOL God, I hate coffee.
Sooooo Sean was being a difficult kid this morning, Meghan threw up, she started school today, so it was a little different for her again. I got a shower, all the while my moms yelling at me because she can't find random things, then I put Meghan in the bath, dry her off get her dressed, hair in pigtails and off to the trainstation I go. WOOO Septa straight to 30th street, baby! Sat at Cosi, had a TBM omelet squagel (square bagels need to not happen)
Got on the www.boltbus.com headed for 34th and 8th aka Penn Station, NY. Couldn't get my wifi to work the entire trip. I was pissed off at the world. Figured OHNOEZ my whole day is going to be like this. Swore Mischa Barton was on the bus. SWORE SWORE SWORE. (I now don't believe it was her. but whoever this girl was, I think she was a low-grade model because she was bitching at someone she was calling her agent, who apparently is an epic fail.) Anyway, I had things I wanted to say that I needed to add to what was online. whatever.
Took a cab to The Hilton at Avenue of the Americas. Once again, NO WIFI. I wanted to take notes via the computer. Well, I could have done that, but no plugs. LAME, and WIFI was like, $100USD a day it said.

I took some scribbly notes, which I will post pictures at some point. But ended up taking pictures of the powerpoint pages. :D epic idea, Jules. Everyone else started to take suit. GO ME hahaha

I never explained what I was going to. It was a symposium for my kidney disease (mostly from a pediatric perspective, but all about research and different modalities aand such!) Focus on Focal. A lot of people look at me like I set fire to a hut when I say "Focal Segmental Glumerulosclerosis" It was nice to be able to discuss it with other families who understand. I asked a question *at* the symposium, because they mentioned pediatric thrombotic events.

Lets see, I had a really bad migraine during the symposium, so I went out for a breather. Stopped at the MoMA, got lunch at this place http://www.cafemetrony.com/ buffalo chicken on romaine with chickpeas, parmigiano, carrots, sun dried tomatoes, and cucumbers. om nom nom. omg. Got caffeinated, went back to the symposium.
After the symposium, I went to 30 rockerfeller center. Saw 30 Rock being filmed :D :D :D :D :D :D

Then I went to the dinner, roundtable discussion re FSGS. Met a bunch of wonderful people. I asked a question to the panel. Something about the MTHFR mutation and if its correlated with FSGS or NS in general. One of the women who works for NephCure, Lyla, she had been talking about my case to a specific doctor. He came up to me after the roundtable and thanked me for my question and actually complimented me on the way that I articulated it. :D Lyla had been telling me all about this doctor before. His name is Dr Rasheed Gbdasian (sp of the last name?) he's from Duke. He said to send him a sample of my blood and he'll test for what variant my FSGS is or gene mutation. Or if its something thats not seen.
This is all because like, everyone in my family has this disease. I mean, 5/6 of Biomom/Dad's kids + 2 Biouncles, and biograndpa. Thats ridiculous. I wish I could get everyone on the same page, you know? I'm working on that.

Anyway, I'm off. I'm just on cloud nine right now. on the bolt bus on the way home. I can't wait to get home and kiss the littles on the forehead. I missed them today. But mama had an AWESOME day to herself!!! I need more of these.
Now that I know about the bolt bus, etc, I'm sure I'll be going to NY like its 2000-2002 ;) Plus, I have a lot of friends who still live up here. I was thinking of staying the night, but I figured I'd rather see my kid off to school tomorrow for class picture day.

Goodnight everyone!!!

Lace and Leather

2010-08-27T12:55:00.000-07:00

ok, so ironically, this is the song that I ended my day with on tuesday.
see how i love my music? LOL

Monday was a really awesome day. The morning started with me having to pick up blood work slip at my doctors at 8 am (if you know me, you know I AM NOT a morning person, whatsoever), a meeting with Sean's teacher, the staff at his school, and Seans BSC, MT, and coordinator. Then I had to work 10-6.
I got everywhere on time, everything went smoothly. I even had time to pick up my signature drink from Panera (the barista knows what I want before I walk in LOL) chai latte, double shot of espresso, and some chocolate for good measure. YUM, quick delivery of caffeine =D

Work was awesome. I love my job. I had such a good day. I even took to facebook to say how wonderful it was, about how I hit the ground running LOL

Tuesday, on the other hand, was supposed to continue the amazingness, but ended up just being crazy. (after the initial confusion, it ended well)

I was extremely excited to go to this mommy-blogger event at Olly Shoes in Collegeville. I put it into my GPS, and it sent me to Plymouth Meeting Mall. WHY I didn't realize this? I'm not sure. But I hate the 76, known as the schuykill aka the "sure kill". I actually usually don't know it, but its never been this bad before! ugh. Thats how we get to CHOP for all of Meghan's appointments.
Anyway, wrong place. I needed to be in Collegeville. I wish someone would have said "at the intersection of 422 and 29" because um, yeah. That would have been much easier. My GPS (aka my phone. stupid droid) took me all these back roads, and was telling me to drive down roads that didn't exist. At one point, it had me in someones driveway with "Your destination is on the left." o.O Yeah, no. I was not pleased. I called the store and the person on the other line was helpful, but I was kinda beyond help lost LOL

So, an hour and a half later... I'm at this place LOL I was able to meet the owner and CEO of Olly, and FINALLY met @joeyfortman (Joey's blog can be found here.) and a few different shoe reps. I was able to share my love of the tsukihoshi brand with their rep. Seriously, Meghan has had hers for 2 years. They were the only shoes that fit her with the SMOs, and then they still as her feet grew because we had the insoles out (umm i think the dog ate them?). They lasted us a long time. And still look great. Just throw them in the regular wash mashine and voila. They wash wonderfully.
I bought her and Sean a pair. Hers are brown and pink, Seans are blue and silver. This makes me happy! The saleswoman at this Olly was so incredible. As was the whole event. We had such a great time!

Then we headed off to best buy to pick up the Sarah Moulton cookbook that my mother had won at the last mommy blogger event in June. (Yes, we've been crazy busy) and to visit my friends who work there. Of course, Meghan kinda got sick on the floor :\ but it was an easy cleanup. They had a blood drive, and there seemed to be a good turnout. I wanted to donate, but I didn't have the time, nor did I have anyone to watch Meghan. So we went to KOP Mall to pick up a replacement lipstick for me at MAC. Saw more friends (Angel and @EVil2uCe/Marc'us). Meghan was in love with the place. This was the first time she went without a stroller. She had so much fun wanting things. I took her to Cartier because my friend Jon works there (he wasn't in) and the salesman asked if she wanted a watch or diamonds. She of course exclaimed "Mommy likes BOTH", which... I've not worn a watch in... well, my friends mom worked for Swatch and gave me one once. I wore that in like 1987?

We went into a couple other stores, Meg got a little "makeover" at the MAC counter in Macy's. Then I bought my obligatory chowder at Legal's. She fell asleep in the car, and it was pouring rain. By the time we got home, it was almost time for Sean to get off the bus, so we just sat at his stop waiting in the car.

Then I went to work, had an awesome night there, and the night ended with Lace and Leather by Brit-Brit.

Most of my music is on my old computer, but I'll be getting that uploaded soon and I'll be rocking out to things I've completely forgotten about ;)

oh oh oh! btw, check out my friend Julie here. She's awesome and amazing!!! We're doing a clothes swap. She sent me one of her awesome tanktops and I'm sending her a couple of mine. Nothing like intrastate clothes sharing! As she said " Padded envelope and 2 stamps and you get a new shirt for a month! YAY!"
and the lemonheads (or is it Evan solo? idk, either way, I'm there) are playing 9/26 at the North Star (27th and Poplar Phila.), which is probably my fav venue in Philly.

Leather and Lace

2010-08-27T11:27:00.000-07:00

This title reflects the song that I opened my day with on Tuesday.

Totally random. I love my iPod. It was lost for a couple days. Of course this is while we were at the beach. I wonder if it was hijacked so we didn't have to listen to my music on the ride up/back.

Whats been going on lately...

Sean started kindergarten last week. I'm going to post a few pictures soon. Probably because I've only posted 2 really not so great ones.

on 8/10, we received a call from this school I was extremely hopeful that Sean would have the chance to attend... I had pretty much lost all hope at this point because we were told in February he was #43 on a waiting list. I was in talks with our school district, their school psychologist, and pretty much everyone and their best friend trying to get him placed correctly.
Oh, have I mentioned I finally got Sean wraparound services? He was diagnosed as on the spectrum with the label PDD-NOS. We were supposed to have a psychiatric evaluation done last Wednesday. That was our week we were supposed to be at the shore. There was seriously *something* that did not want us to go to the shore. First, Patrick got sent jury duty papers. THEN we were told that Sean had this psychiatric eval for last wednesday. but on 8/10, we got the call from this school, "Sean has been accepted! Sorry for such short notice" all the while, I'm thinking "short notice? we've got 3ish weeks" yeah, no. He had 6 days. LOL
After his preschool graduation, Pats mom and I went to Flynn and O'Hara to get his uniforms, and then Target for all his school supplies.
I'd never done uniforms before. WOW! Also, Sean didn't do so well. It was kinda crazy at that store, and Sean was very insistent on watching the embroidery machine. He would not try on the clothes, when we checked out, people were like "Sean, you're famous. we all know your name" because I was running around after him, wearing my 4 inch heels from the graduation (i had forgotten my trainers in my moms car). Thank goodness I know how to run in heels? i guess. haha we finally got him fitted.
Meghan had her "graduation", I put this in quotations because she didn't actually graduate, she's in a new classroom though. Thats exciting. I know she's going to miss Miss Debbie, she's been talking about her nonstop on her summer vacation haha
Anyway, so Sean started school on the 16th, and we had a stay-cation. Over the weekend, we went to OCNJ with Pats family.

I mentioned that Sean was SUPPOSED to have his psychiatric eval on wednesday the 18th. We'd been waiting for this appointment for 8 months. Not exaggerating even a little bit. Tuesday at around 5, we get a call "Um Mrs Ritter? The doctor is sick and we're going to have to reschedule." Theres no other word to use than pissed at this situation. Of course, I was nice. But I had no words to say about this. So, we hung up with the thought that we'd get a phone call by Friday. Nope. I did, however, get a call a couple days ago with a "tentative" date of sometime in October.
Once again, I'm angry.
I talked to his school psychologist (we've actually had 2 meetings about his IEP and such since he's started, not to mention he has his IFSP next thursday) and she said to suggest taking times out side of the regular office hours.... So I took that idea and ran. Called his coordinator and said "Um, I'm not really concerned about the doctors lunch time, I'm concerned that the doctor canceled on us and Sean was automatically put at the back of the line, and what I feel, thrown under the bus again." 2 hours later, I receive a phonecall saying, "Sean can be seen next thursday at noon."

HOORAY!!!

ok, thats it for right now, Meghan still doesn't have school, so she's home to hug. I'm going to do that :)
Maybe a post when she goes down for a nap (20 minutes?) lol Tuesday was a crazy day, and it deserves a post.

Update!

2010-07-29T19:38:00.001-07:00

I feel bad, I always forget to update. It was seriously a new years resolution to update more.

Last night I had some quiet time, and decided to actually do a youtube video blog. Well, after about 4 takes, I scrapped it. But! If I ever do actually do one, it will be at youtube.com/sundayismine

What is all new since July 1. Some funny stories involving my Phoenixville friends. Saturday night game nights, a little bit of karaoke.

a few baby showers and birthday parties coming up. Last night was my friend Jesse's bday party up at PJ Ryans, but I didn't get out to it. Awesome bands playing. Karma Bat went on at midnight.

Healthwise, I'm taking my blood pressure medicine, its kind of keeping them in check. not 100%, but a LOT better.
I'm going to a symposium about my kidney disease on August 31. Its at the Hilton in New York. Pretty excited about that.

August is actually crazy busy. We leave the 15th for the shorehouse (OCNJ) the 14th is Monica's picnic, 7th is a shower and... something else... oh! reunion for the lionville regal rats LOL if anyone remembers the Lionville Regal... oh boy.

ugh, right now i'm watching this trainwreck of a show jersey shore. its the season premiere. this is totally ridic.
ok, i'm exhausted. goodnight!

Cuppycakes!!!

2010-07-01T12:46:00.001-07:00

This is for my own reference, and I'm going to be making them soon. I think they're perfect for a 4th of July party. om nom nom.

Ingredients:
1 cup flour
1 cup sugar
1/2 cup coca cola
1/2 cup butter
1/4 cup milk
3 tablespoons dutch processed cocoa
2 tablespoons rum
1 tablespoon lime juice
1 teaspoon baking soda
1 teaspoon baking powder
1/2 teaspoon salt
1 egg

Directions:
Preheat oven to 350. Line or grease and flour 1 12 cupcake cupcake pan. In a small saucepan, heat butter, coca cola and rum to boiling. Remove from heat and allow to cool. Mix together lime juice and milk in a small bowl* or measuring cup and set aside. Meanwhile, whisk together cocoa, flour, sugar, baking soda, baking powder and salt. Add the cooled butter/coke mixture and beat until well combined. Add egg, beat then pour in the milk. Mix until combined. The batter will be rather thin. Fill each well 2/3 of the way full. Bake 20 minutes or until a toothpick comes out clean. Remove cupcakes to wire racks as soon as possible to cool. Frost with Chocolate Rum Cream Cheese Frosting when cool. Garnish with a wedge of lime.
*This will sour the milk a bit. Do not worry if it looks slightly curdled.

prayer circle request

2010-07-01T08:12:00.000-07:00

ok ok, if you know me. I'm not an extremely religious person. Spiritual, yeah. But I don't adhere to a certain religion, necessarily (born Catholic, and i attended an evangelical, non-denominational congregation at one point in high school). Anyway, please send good thoughts/prayers our way to get Meghan into the feeding clinic at Hershey Medical Center. Of Course, her insurance covers the center itself, but not the feeding clinic.
Since CHOP was such an EPIC failure..... I'm hoping this would work out much better. Especially since Meghans stroke was in the sensory core of her brain. CHOP's approach (and it may sound like I'm bashing their program. I'm not. Just saying it wasn't a perfect fit for our family), takes more of a psychological approach. Hershey is sensory based, sees more autistic spectrum kids... the director came from Kennedy Krieger, and comes highly recommended by the kids' developmental pediatricican (she trained him many, many years ago).

Ok, Seans BSC from wraparound will be here any minute. Thank you for your continued support! we just had a wonderful thing happen to us yesterday, after a huge bureaucratic battle, we fixed everything regarding the kids insurance, et al. wooo! now we don't have to worry about it for another year.

Real Update Soon! xo

Emotional

2010-06-28T09:50:00.000-07:00

Ok, so I've dealt with a LOT of loss in my life. Friends, family, my mind, cars, stuff. In various capacities. Death, fights, stupidity (yes, that last crash was extremely stupid), and the such.

Never have I ever..... lost usage of an organ. I haven't even had a freakin cavity. (OK I lost my wisdom teeth. but like, everyone has that.) I went to the Nephrologist at Penn last week, Dr Jeffery Burns. now, I KNEW my labs were bad. I don't know what I was expecting. I'll just tell the story as I remember it and I'll have my mom read it later.

My mom wanted to come with me as a second pair of ears. She drove, but we took a really stupid way (drove through delaware county. Which is ALL lights grrr) so I'm freaking out about getting there in time. SO! Then we get to philly, my appt was at 9:00 it was like 8:57 (I'd called and the girl said "theres a 15 minute grace period) so of course, theres no parking. I bolt out of the car to get up the stairs (I'd never been to this building. its nice.) and I go to check in. I did the pre-reg already over the phone days before. They call my name, I have all my records in hand, like its a resume for my dream job (HA!) and they're like "sooo you have aetna" or something and i'm like "ummm no, i haven't had that for years?", and of course little fingers used my insurance card as a toy a couple days before. I knew exactly where it was sitting, I could see it in my head (if only I had such a great photographic memory and memorized the numbers). I called Pat, and I guess he gave me the wrong numbers because it wasn't showing me as active.
By now, I am LIVID (on top of my anxiety, on top of the fact I slept maybe 45 minutes). I called the insurance company and they were giving me crap. Saying I don't exist, I kept saying "I pay you guys $800 or so a month I'd better exist" grr.
Finally, they found me, I waited for a few minutes. Got my blood pressure, 159/109. its GOOD! wait, no thats baaaad. (but its good for me, whatever.) Got my weight, gained 5 pounds in a week! GOOD! because the week prior I couldn't keep anything down. I guess I stress ate, carbs et al. Not to mention I'm feeling like my stomach is distended. Just like my whole body is puffy and too heavy for me to move. I've felt like that for like, a month. just so uncomfortable. :\

When I got to the room, I waited maybe 3 minutes. During all of this, I literally wrote a biological family tree. Checking off everyone in my biofamily saying what ailments they have. Including the sis/bro who've already gone into failure, my paternal aunt who has lupus, the whole fact that Deborah (biomom) died of complications of this, brother/sister who are symptomatic and scared to get tested. And that Meghan had her stroke, asking if theres a possible genetic link between this and that. There are kidney issues that can cause strokes/aneurysms, but not FSGS. (I really want a real answer about this, can you tell?) The doctor also said "don't get the kids genetically tested" Like Dr Koplevich (spelling? woops) wants them to get. He wants my little sister to get genetic testing to see which genetic malformation is causing this in our family.
My doctor said its not that easy, there are mini malformations and other big words that affect the outcome.

Back to the visit. He got straight to the point, "Right now, you are at 30% kidney function. Within probably 6 months, you will be at 20% and a candidate for our transplant team" Yeah. I was KIND of expecting that but I was hoping he was going to say that there was something else going on. Also, he was concerned about my white blood cells and platelet counts (They always are. lol I just saw the hematologist a couple days before this. When I was in the ER they told me to get to see him the next day because they were bad. But not bad enough to admit me? so yeah. thats a non-issue, or something I'm putting on the back burner. because my red blood cell count is amazing. goooo me. and i'm not anemic!) and the fact I had HELLP syndrome with both my children.

He gave me a DVD about kidney failure and beyond (is that what its called? i should go look at it. It should be called that, and I should get royalties.) I tried to watch it Tuesday night with Pats parents, but its not really television for kiddies running around. Gave me booklets and wants to see me in 3 months. Oh, and the cozaar is up to 25mg q.d.

I'm scared, and I feel like crap. I'm trying to take my mind off everything.
I had a good weekend, filled with friends and such. but i couldn't get outside of my own head after awhile. My friends had a garage sale/show (I put a video of Elissa up on www.youtube.com/sundayismine), cops got called for noise ordinance at 4 in the afternoon? that was kinda funny. Nobody got cited or anything. Then I went to my friends Ken and Michelle's house. I played with a full band. I had NEVER played with a drummer before. Good times. Sunday was work, and it was dead. SO! I was totally stuck in my head, and in a rut.

One woman asked me if it was my summer job, thinking I was in high school. That really gets old after awhile. Now that I'm feeling like this, I want to be like "I may look young, but my body thinks its 70" Seriously, its daunting whenever you go to each doctors appointment and nobody there is under 70. Luckily, this office in Penn, I saw a girl my age. I almost felt like I wanted to hug her. If I didn't have such social anxiety lol

Oh! Speaking of. A very close friend of mine noticed I was down at the party. She said to me, "You're always cheery and happy. You always have a smile on your face." I didn't really think thats the look I portrayed. Thats nice though. I really don't think people know of my social anxieties though. I'll have panic attacks in public places somewhat often.

Ok this is long enough. sorry.

Strongly worded letter to my body; please pray or something

2010-06-16T22:12:00.000-07:00

Dear body, stop acting up and do something right for once. This latest batch of tests are horrendous. Study next time, kthxbai. PS study white blood cells the most. you failed miserably on this one. 2.2 is UNACCEPTABLE young lady. ...Critically low. You know what this means? most likely another bone marrow study. :\
while I'm here, anyone A+ for blood have an extra kidney? mine seem to be deteriorating at a rate faster than initially believed.

values (for those interested)

WBC 2.2 (4.5 - 10.8) critical value checked, called and verified by read back to (Trish's MOM?! thats a bit weird...Andrea is the only one who will understand that.) at 1205
Platelet 87 (150-400)
and my creatinine is 1.9, up from 1.4 in January. up from .9 last july. Normal is .8. on my way to kidney failure...... scared as hell. GFR is 31 or 32, 25 is ESRD.

i'm really freaking out. and i'm pissed that i didn't do more (?! what could i do?) wasn't more vigilant about this stupid kidney disease. Please look up Focal Segmental Glumerulosclerosis (aka FSGS). I want to do the kidney walk this fall.

I've already lost my biological mother to this disease, my little sister went into failure at 17 (6 years ago, since has a transplanted kidney via biodad), brother at 20 a month ago, he's on dialysis. My brother Jimmy (24?) and sister Kori (25?) ? have incredibly high blood pressure /other markers (proteinuria), and are terrified to take that leap into finding out if they have the disease. That leaves one full blooded brother that I'm not in contact with that I don't think has presented with symptoms. one half sister on my biomoms side that I don't know what she does.
I really just think its just the genes of my mother and father, its dominant and blablabla
The kids nephrologist is asking my biosister to see if they can do genetic testing to see WHAT our actual genetic malformation is, or are? idk. Hopefully, she will do this.......

I wonder if this has any affect on the reason Meghan had her stroke.

I don't want to have/be tested for leukemia again. I was this sick before, its why I left downingtown high school and went to upattinas to do homeschool.

Please send positive energy etc toward me and my family at this time. I'm really feeling low, down, and out. Everything is piling up on me, and I'm trying not to sound like a martyr. I'm just overwhelmed and over stressed.

Terrified of dialysis. Terrified of fistulas (seen one recently, scared the ish out of me) terrified of dialysis wards (thinking of doing at home dialysis, or even peritoneal dialysis (aka bag exchange) but I think I'd have to get rid of my animals. or like quarantine myself idk. I had a friend who's dad did that.

ok, sorry for ranting. just so scared. PS my albumin is low, I missed that page.

Best Night of my Adult Life

2010-06-07T21:59:00.000-07:00

Conan O'Brien was at the Tower Monday night.

The only words that can be used to describe the show tonight? Amazing, Impeccable, Extraordinary... You get it. Anyway, I was there. I had JJ seats, meaning 10th row, floor, left orchestra. Conan was wearing a Flyers jersey. GOOOO FLYERS! (He was just in Chicago the other night, did not have love for ChiTown LOL) He kept thanking the fans, and telling us how wonderful we are, and that he's never had anyone PAY to see him before. After 17 years of being on Late Night TV, he had to go through certain stages of grief. One being 36 straight hours of Red Bull and Halo. and the last one? "Get your ass to Philadelphia!!!"

Well, we were surprised by amazing guests. Tina Fey (Upper Darby native. My home town, as well), Trey Anastasio from Phish (I've seen Phish like.... 9 times hahaha), Reggie Watts, Deon Cole (He's a writer for Conan. so funny, he made me spill my drink i was laughing so hard), Andy Richter... He zoomed in on me with the groupie cam haha That was a highlight. After the show, I had a bunch of people recognize me. That was nice.

I think Tina Fey is pregnant. Just sayin'. She is so cute and adorable and I want to hug her haha I posted a whole bunch of pictures on my facebook. Including the one of where Conan grabbed my shoulder. and the point where he locked eyes with me (i shoved myself even MORE toward the front toward the end haha, I'm good like that) and made the "call me" motion. He's in love with me hahahaha Yeah, my friend Andrea would say "you and him can go make 1,000 ginger babies now" bahaha She's obsessed! (with that and twilight. I'm sorry, I can't get into twilight. I was made fun of for being skinny and pale with naturally black hair, called a vampire all the time. Stephanie Meyer did something nobody else could. Make vampires cool. But I do want to watch that True Blood show. everyone talks about it)

Since the show though, I've been feeling sick. I've also been constantly on the phone, but not in a leisurely way. I've been talking to school psychologists, teachers, bsc, mt, caseworkers, etc. Also, Meghan is having oral surgery on friday morning.

Good times!
Did I mention that my iPod got stolen? Yeah, unhappy about that. Pat gave me back the one I gave him until I get a replacement. I'm pissed because I have NO idea how it got stolen/lost. None. My faith in humanity goes down another notch :\

What else.... The school district offers a summer kindergarten readiness class. I want to put Sean in that. its from 9-12, but Seans school is from 12:30-3:30, and they don't offer any transportation to the summer program. School does, but they can't pick him up from the program and take him to the hellish drive of his school. I hate driving down there. it takes me a good 30-45 minutes. I went last week, and I swear, everytime I go down in that area (Atglen), a bird smashes into my windshield. or my car in general.

does anyone have any experience with gluten/casein free diets for kids on the spectrum/ with adhd? please comment. thanks!

2.99C Blues (Regina Spektor)

2010-06-04T23:02:00.000-07:00

Ok, I've reached a new low in blog post titling. iPod random song-ing.

anyway, i'm just sitting here, pondering life et al.
and the fact that i think my friends are the most awesome thing ever. i mean, i do have some fair-weather friends, as many people do. And there are people that I catch up with now and again, but we're not in constant contact.
But! For the people that are in my life right now, I am so extremely thankful. They "get" my idiosyncrasies. Or, even better, they just don't care. I'm not that meek, insecure chick anymore. I've had far too many people in my life put me down for being a little eccentric. Like a certain main male figure in my life Why can't you just be noooormal, Julie!? because the world is our own to create and play with. Yes, there are certain times where you have to put on your game face and wear big girl britches, but seriously, too many people take too many things TOO SERIOUSLY! I'm one of them, at times. I mean, I try not to be overly critical (of mainly myself and things i do, but... yeah, thats just how people are anyway?) or judgmental. Some people who have mocked me have gotten karmic retribution, so, I try to be a good person.

Then theres the line where "being a good person" turns into "being a doormat". There are people that come in and out of our lives. Sometimes they fall out of our lives for a reason, and freaking FACEBOOK shouldn't bring them back (stop telling me I have 132 mutual friends with this person, I refuse to add them again!) because a) rehashes bad feelings b) they're complete toolboxes, c) they don't really remember me because I look somewhat the same but enough different that people compliment me (oh god, was I that bad in school? lol) But anyway, my point is: I accepted a couple people from my past into my life recently. 3 to be exact. And I got burnt all three times.

one) just flat out is a bad person. always has been, i've always stuck up for this person (despite EVERYONE warning me; and me seeing it a little bit personally, but refusing to believe it) but she totally was saying horrible, untruths about me for no reason. Then kept texting me like "omg i need a ride here blablabla" SERIOUSLY, I see the forest for the trees now, Miss. Came to blows when I said I'd meet her for drinks. I didn't even order a drink, she asked for a double of "house vodka" o.O (bankers club?!) and then couldn't find her money. I wasn't going to fall for her trick of being stuck with the bill.

two) friend was in a really bad spot. but took advantage of my hospitality. basically became Kraemer from Seinfeld. Coming over unannounced, eating my food (Hello, my husband ordered Domino's for a treat for family night; here you come all unannounced and eat 4 slices and then ask if I "really want all the breadsticks"?!)

three) most recently. friend asked for a ride somewhere. i didn't think it was too far out of the way. found out they wanted me to drive them to see their girlfriend, disappear for awhile because that would look weird if he rolled up with another girl, and then get a ride back to where he's staying.
um, no. i'm not a taxi. took him to where he was staying and that was it. i didn't want any freaking drama, but it got created anyway. whatever, doneski on that.

Those are just the most recent ones. So, yes, we may have had chem class together in 9th grade, but not interested.
Not saying that I haven't reconnected with a lot of great old friends, just saying I'm a little wary now.

Ohhh and the level ten stalkeroos. "No, I don't remember your name... but sure I'll add you because maybe if I look at more pictures I will" Next thing I know they're stopping at my place of employ. agh. not cool there either.
This is why I have google voice. Its called "remote blocking", you'll know if you have my real phone number. And if someone calls me with that number, my phone rings differently. But, its really come in handy for friends who have lost their phones or what-not. And I like the visual voicemail.

My best story though, and I'll leave this on a positive note: I re-met a girl I was peripherally friends with. We'd exchange his but never had a real conversation. WELL! Her and I hit it off like a house-fire, and I'm ecstatic to have a close friend. I've always wanted to use that phrase outloud, and have it mean something. So yay for context.

I may actually fall asleep. I've gotten NO sleep this week and my body is so regulated to adrenaline mode.

Maybe a funny post tomorrow. lets see how things go.

OH! and if I don't post tomorrow? I probably will tuesday. Because I'm going to see Conan O'Brien! So excited about that. I had a friend who passed away who was pretty much obsessed with him (and a certain band, that I've seen and met. They know of his existence. The drummer actually talked to me for like 20 minutes about him. Its good to know they care about their fans! but sad to say this awesome 90's band has fallen off since their sophomore album. when their bassist left). I don't talk about this friend in public forums very often because its really hard. Almost 15 years and its so, so hard.

Dammit, I wanted to end on a good note. so um... KITTIES! and Conan O'Brien. and umm Joel McHale (even though he had a total midlife crisis hair transplant surgery and bulk up period? I'll allow that)

Sorry if I'm not entertaining lol, I write stream of consciousness, and for all intents and purposes, I'm unconscious :P
This picture of Lindsay and Aliana... This is my favorite pose; i do it all the time. And I think she's looking clean. so go Lindsay! (I'm not even a fan. I just thought it kinda went with the Mean Girls concept a bit, and the fact that Regina sings the song in the title of my post. Maybe not Regina George, but yeah, whatevs, i need sleep)

Titles are Supposedly Important....

2010-05-31T20:52:00.000-07:00

ok, so i'm having a hard time being original. or better yet, inspired. life is the same, everythings just craziness. i mean, people are like "how are you" i hate that forced "good", because I'm an emotional person and people can suss out the fact that things are crazy. i mean, things aren't necessarily "bad", well, i guess its a perspective thing.

if i were still seeing my therapist, who has this look about her thats... well, new age-y, kinda hippy, but with a grandmothers edge? idk. anyway, she'd probably say that i'm sabotaging myself because i'm failing to see the positive. but i AM seeing the positive. my problem is that i fail to see anyone else seeing it!!!

We'd play that game "well, how does this make you feel", and I'd come up with some dumb answer like "angry as hell, man. how am i supposed to feel?!" then she'd say something about breathing techniques and time would be up. and she doesn't have a receptionist because everythings in her home basement (ok, really, i haven't seen this woman since I was pregnant with Sean. and before that I was a teenager) But I'm just envisioning to make myself feel better.

I need to write more, I need to KEEP myself inspired. I mean, it doesn't matter if anyone reads this LOL I'm not getting paid for it.

OOH! Something I've failed to blog about (i cannot believe that spellcheck understands that blog is a word but not spellcheck, i get the hyphenation issue, but REALLY?!) I've been putting my resume out there because I want to put my toe into the real world. Well, now that I think about it, I've been experiencing the harsh reality of real world. Now I want to put myself back into the fantasy music industry. Its been seven years. I've got lots to catch up on. Jeez, I haven't listened to the radio since god knows when. I rely on a couple people to guide me in the right direction, music wise. But I still stick to the freakin standards (Gram Parsons, Smudge, Hank Williams III, Juliana Hatfield, Evan Dando, Jawbreaker. vast difference in these you see. I'm eclectic.) but I've gotten sucked into pop culture (without turning on the radio) Britney, do ya hear me? GaGa and her 3 songs that I like?! lol

Anyway, I'm off point. I put my resume out to the world, annnnnnnnnd I got a callback. Holy crap. They LOVED my nonsensical care for the details that we discussed in the interview, which was less of an interview, just a musical whiteboard. Having worthwhile adult directed conversation! its unreal. So, they told me they loved me. Job would be mainly via net, but quite possibly once a week going into the city. Now, I may live near Philadelphia, and you may classify that as a city. BUT! that is town for me. lol I'd be taking the Acela from 30th St to New York. I'd be working with a woman who is VERY integral in the riotgrrl movement, and is a visionary. I was not always particularly a fan of hers, but I cannot deny her importance to the scene. I'm fully accepting of her vision here, and what she is trying to do. Also, I'm not going to jinx things, and say who it is. (I'm going to go ahead and say its not Courtney Love, because.... well, its not. and if you know me well enough, you know that I'd be screaming from the top of my house about it) added as an after thought to this: I also had a time today where I decided “Hey, I want to sell all my guitars. I mean, Spano has my Strat anyway, another friend has the Tele, my Rick has to be refurbed, I'm too lazy to restring my Ovation. I'm just sitting here playing the kids 3/4 guitar.”

anyway, back to me. and my issues.

Life is completely different these days anyway. People would ask “…what’s going on in your life?” I would say something like, “Me? umm, I didn’t get a callback for that one shoot that I swore was a lock, and I tore the hem off of my favorite vintage dress.” And then feel like an pretentious, overzealous twit. So I guess in a strange way group therapy worked for me, because it made me realize that I had no real problems. But now, people ask “…what’s going on in your life?” and I can't stop, “Well, Meghans doing great in school. She's amazing in every way. She's still not eating, but we're kinda making progress. Also, TRYING to get into Hershey's feeding clinic... and Sean was diagnosed as on the spectrum last week, on top of his ADHD diagnosis, and we're trying to find out what his educational options are....bla bla bla and so on it goes”

I work so hard, every day, advocating for each of my children, and just when I think I've gotten somewhere, something makes me look like a jerk. Our school district isn't known for being the best. So, when I found out Sean is on the spectrum, I immediately thought, “Well! This could help him. Theres not much for autism in the school district, all the charter schools we applied for, we're waitlisted, this could be our in to another district, or a private school, all expenses paid” (because by law, if the district cannot facilitate a child, they must, at their own expense, send them where there is the least restriction. of course, there are tricky loopholes to this, to which I am learning the detriments of) And then I realize I sound like a freakin entitled mommy that I've been trying NOT to be my entire parenting career.

Man... too deep there, I guess. idk, i'm just letting it all out. i'm changing the pace because i'm really trying to write to evade the rest of whats going on in my head.

maybe i'll just head to bed.

time to contemplate...

2010-05-20T19:48:00.000-07:00

ok, so here i am, sitting on my couch on a thursday night.

Meghans finally back to sleep after Sean woke her up... My best friend in the entire world (and I may say "one of my best friends/one of my good friends, a lot but this girl is my ROCK), Nikki, came over to see me with her son, Aiden.

Of course! Sean was like all over the place. He was so good with the baby, but he was being too loud and woke Meghan up. And she called Aiden (who is 1.5) her boyfriend (so it begiiiiiins!). I immediately thought "oh my god, my 3 year old is a COUGAR" LOL

But yeah, Nikki and I got to hang out a little bit, in between me telling Sean to stay in his room, Meghan opening her extension set and making a MESS of the formula (i have to say, i can't 'wait wait wait until this gtube is goooooooooone)
that leads me to a segue, one of the girls who works at our Pharmacy. Her and I have become pretty close. We're there every week at least. Meghans medicine expires after 2 weeks, and the rest of us have scripts too. They never seem to coincide lol Not to mention my absolute adoration of Target. Anyway, her son had a g-tube for 11.5 years. He just had his taken out a couple weeks ago. Her and I had a conversation about it, and how I somewhat kind of like the concept of it for the instant access. I don't have to wake my kid up to give her medicine. I feel bad. Someone said "ugh, I have to wake JD up to give him his meds" and my immediate thought was "why?" but then I realized lol

What else is new... Oh! Still going to CHOP weekly for Sean. But I think we're going to stop that because I'm fed up with the program. Plus, Pat thinks, and I somewhat concur, that the doctor (and the program) are extremely condescending, pretty much at the pandering point. So so so so frustrating. Not to mention, we've gotten the report back from Seans ADOS test and He's hit the Autism Spectrum category. Just not in communication because he's well, communicative.
FINALLY! Its like, vindication!!! I've been saying for years "look, theres something thats just *not right* here and its not just ADHD." I think the world actually primes us to be ADHD anyway, but thats neither here nor there. Just the pace as in which the world moves is just insane. Commercials have to jam so much information in just 30 seconds, and our brains have to process that all so quickly, you know?

I sound like I probably have ADD of some sort haha Only because I tend to write stream of consciousness, I don't have a filter, and I don't know when to shut up.
So that makes me think right now is a WONDERFUL place to end this. :D

daily life?

2010-04-21T19:52:00.000-07:00

Pat and I have been going to CHOP weekly. Right now, the plan is not for the kids to go, just for parent meetings. So we go while the kids are in school.
This program is working well. So I'm pleased with that. Sean is getting checked to see if and where he is on the spectrum. Some people think that he is, some think he's not. I feel conflicted.

I had minor surgery a couple weeks ago. I have to revisit the issue in 3 months. Don't really want to get into it, but its happening, so I may as well say something. I didn't see my nephrologist because I had to get my stitches out the same day as my appt, and I didn't want to get too much bad news in one day.
But now, my little brother, Michael, is in the ICU with, what seems to be, end stage renal failure. (where I'm headed. ugh.) Hes doing dialysis, but refuses to see/talk to anyone in the family.

I'm scared for him. I can't imagine how he's feeling. My little sister already has my biological dad's kidney. The kids had to watch biomom on dialysis for years... ack another thing I guess I don't want to talk about in such a forum.

Lighter subject. Criminal Minds. I love this show. love love love. and now Thomas Gibson (aka Hotch, aka Greg from Dharma and Greg) has a twitter. I didn't know any of the cast had one, but now I'm following him and MGG aka Dr Spencer Reid. I'm having a hard time with the newer episodes, as I love Mandy Patinkin. I just type cast Joe Montegna as his character from the starter wife (i just admitted watching that...)

Oh, looks like I'll be playing a show sometime soon. I'll keep the updates coming as soon as things are in. My life is really just busy but stagnant at the same time, if that makes any sense.

ok, have fun!

phew

2010-04-10T07:53:00.001-07:00

OK! So! Its been a long passed few weeks. I feel bad I haven't updated. I've been without a computer, an ipod, my mobile phone has been messed up... also, i was without tv for a few days. I think I have a magnetic shield around me that kills technology.

Its been a rough few weeks, indefinitely. More CHOP, but this time for Sean. Twice a week. I kinda hate septa. Took him to wraparound. We're doing more testing to see if he's autistic.
I'm so incredibly frustrated, sad, and I'm having my own medical issues to deal with. Thursday, I have two doctors appointments. Hopefully ONE will have good news. Nephrologist hates me. so I doubt he will anyway (not that his personal feelings toward me have anything to do with my creatinine rising, but yeah... Its getting high, and not good) He's going to be mad at me because I hate the blood pressure med I am on. It makes me sluggish and miserable. and I'm on half the lowest dose.
He'll say its psychosomatic, I'm sure.
I had surgery where they took out lymph nodes the other day. Unpleasant. I'm in pain. :\ I've been videotaping local bands. Thats been fun. Wanted to do a show last night, but decided to go to dinner with a friend instead.

What else... Meghans doing very well. She loves school, and is my little gymnast! We're going to put her in dance class when our schedule clears up a little.

I'm petsitting my friend Erin's Birman cat. Princess Fuzzy is the cutest thing ever. I've posted pictures up on twitter :)

Pats working like crazy.

We painted the living room. well, most of the way. And I bet my life is pretty boring to most people anymore. lol I'm just glad to have all of my technology back. :)

bad couple of weeks

2010-01-18T19:29:00.000-08:00

I've been meaning to update over the passed couple weeks, but life has not slowed down enough to let me stop and breathe.

We haven't gotten any answers about Meghans condition other than "her stomach and her throat are inflamed, friable, and ulcerated", the words nissin fundoplication cold be on the table again. Could be H Pyelori or something else. Biopsies were taken, and nobody is returning my phonecalls.

Two friends have passed away in the passed couple weeks. Two amazingly beautiful strong women.

I got bad news about my kidneys. 40% function at the moment. I have to become vegan real quick. I'm trying to come up with a diet, low protein, low sodium.
Hey, they had a good run. I've been diagnosed with FSGS for almost 5 years. I was told not to have Meghan, back in '05, I was given a year with the way I was going.... But! they held up well. Doctor was kinda mad at me on friday because I hadn't seen him in 3 years. Welllll sorry, I've been a bit busy. Even before Meghans stroke, she had the vascular tumor that landed us in the hospital a few times...that surgery. Pat losing his job (and insurance) and uh Meghans stroke (which was met with "oh.") I'm not making excuses, I've just been otherwise occupied.

McReady Rock had a show on Saturday at the Pickering Creek Inn. That was fun. Despite the migraine I've had for what seems like forever.

and I'm exhausted and have nothing left to say. I'm going to read some Dorothy Parker and go to sleep. I have a neurologist appointment in the morning. Also, we're going to sign Sean up for this charter school. *fingers crossed*

hooray hospital? sarcasm noted?

2010-01-07T08:41:00.000-08:00

I'm sitting in the waiting room for CHOP's OR.
Meghan just went back and had everyone in the waiting area smile because her giggle, smile, and just general demeanor is infectious. She is having an endoscopy because she's been having tummy trouble. I'm just a little concerned because I don't want to hear that she has an ulcer again (i'm terrified this is whats going to happen) or that she has a blockage.
Meghan's stroke was in her Left Thalamus and Basal Ganglia (I'm sure I've said this before?) which is considered the "sensory core" of the brain. So! This makes her have sensory issues. Actually, she had sensory issues prior to the stroke, so I guess they were just heightened.

Last night we stayed at the Ronald McDonald house in University City, 39th and Chestnut. Such a nice place! They had select comfort beds which... ok, honestly, I couldn't sleep anyway, but that didn't help. Also, what didn't help was an almost lifesize Raggedy Andy doll sitting on a bench down a flight of stairs and around the corner. Seriously, each time I'd go down the stairs, I would catch the legs out of the corner of my eye and get freaked out.

Before that though, I had to walk to CVS to get pedialyte and apple juice for Meg's night time feeding. Since Meghan has ketotic hypoglycemia, I was very concerned having her fast from 11pm-surgery time. After our appt at the Anesthesia Resource Center, I called Endocrinology to see what I could give her so she wouldn't have a crash. SO! Pedialyte and Apple juice it was.

Not even gonna lie, I've always hated Philadelphia. I don't exactly know why. Just have. I could probably guess, but I'm not even going to go there right now haha. anyway, so I'm walking around University City last night, and I'm LOVING this town. After CVS, I went to Chipotle for the first time (Remember the debacle about Pat getting a job there. Yeah. I kinda wish he had though. I freakin love their food!), talked to a couple hipster girls over dinner, then I went to this crazy grocery store. It actually put Wegmans to a bit of shame. it was something like 3 floors. So, I'm all excited about them having a coffee bar (because uh, no starbucks, panera, gloria jeans, or WHATEVER around) because it was freezing and I really wanted a cup of chai to keep warm (oh, and its decidedly so, that I will be going back to Fennario in West Chester for this drink I used to get called "the goat" with chai, hot cocoa, and espresso). Anyway, so I get up to the barista, and asked for my drink... Shes like "we're out of chai" o.O dude, I should have bought my own concentrate and just gotten them to froth milk for me. So, the girls like "oh we have these teabags which are close" This is how she makes this drink, lets see if you can spot the error (you really don't even need to be a coffee/hot drink connoisseur to get what she messed up) What I asked for "Soy Chai Latte". this is how she made it: hot water, two tea bags (didn't even let it steep!?) then she took vanilla soy milk (did i ask for vanilla?!?) poured it into the unsteeped non-chai tea, and THEN frothed the entire "drink"? I say this in quotes because it was completely un-imbibable (yes, i make words up). They only had white sugar too.
i did apologize for being a pretentious snob :x

ok, yes. i did just go on for 6 minutes about a drink. i'm sorry, i'm extremely nervous. don't mind me. ha. Not to mention, *someone* has been getting on my nerves on purpose. I really got probably less than 2 hours sleep, so I'm extremely on edge.

Question for parents. and I'll keep neutral on this as to not show MY perspective, and I'll try to word it as gingerly and in a fashion as to not appear biased. If your child had a rare disorder, or something had happened that there was no explanation for (say, for instance, a stroke?) and the hospital asked if you wanted to participate in a study "of the genetic causes of complex pediatric disorders", would you? Or do you think that participating turns your child into a lab-rat? This is anonymous, unpaid, and they're taking a small sample of blood from an IV thats already being run. Hence there are no personal health risks to your child, the blood is identified by number, not name. There are no actual personal benefits, but it could prevent other children from being afflicted from the same issue that your child has gone through.

Whats your take on that?

My friend Jenny came to visit us this morning. I'm so happy because shes 37 weeks pregnant, her baby shower is on Sunday, and I'm not able to go because I work. I was able to give her HALF of her present, at least. What I could fit in my purse. It was so nice to see her. Last time I saw her was halloween, and before that...probably april. yeah. april. before she knew she was pregnant.

Ok, I've really run out of things to say and I'm dozing off at the computer. I'll update when I get home, hopefully I'll either have no news, or good news. heh

Ikea and other stuff

2010-01-04T04:42:00.000-08:00

Saturday night is definitely one for the books.
Pat was supposed to have off from work, but he got called in (like he always does). Which, you know, that wouldn't necessarily be a problem, but he'd promised Sean that he would take him bowling. So that nixed that :\ But! Pats mom to the rescue!!! She took Sean to church and then bowling :D

While she did this, my mom, Meghan, and I took the time to have a girls night out shopping. I truly wanted to go to Ikea. There were many, MANY things that I wanted to look at. 1) I want 2 Poang chairs. I love those chairs beyond belief and the armchairs that I have are ridiculous. I get crap because "people" say that they're too Dorm-like. you know what? As much as I would love brand new beautiful gallery furniture...I know that I have two kids, two cats, and a large dog. Not saying I want "disposable", but I want things that aren't going to cost an arm and a leg, but still look nice. I think they're kitschy, but not tacky. And they're comfy. SOOOO much more than what I have now. They're so bulky and grandma like LOL I don't know what I was thinking when I got them. Not to mention, they're now weathered.
You probably don't know this, but I adore my couch. Its always been here for me hahaha Plus, it was the first piece of furniture that I got to choose as an adult that suited my taste. (If you saw it in a lineup, previously unseen, you'd guess its mine.) Problem with it is, its very large, breaks up my living room too much. At first, I liked that, I was like "yay, this breaks it into two rooms, playroom and family room" but yeah, no. I don't like that anymore. :\ So, there were a couple smaller couches I was looking at. There are a couple places I can put them. I could actually probably fit three and a poang :D

Anyway. Ikea was an adventure. Just getting there... my mom driving UNCOOL lol She can't have any music on whatsoever. drives me nuts. Then we actually get to Ikea, and shes like "i'm starving" so we wasted half our time there in the cafe. We were working on Meghan eating though, and we had a good time with that. She did extraordinarily well. Kid likes broccoli...kinda. lol She kept going "CHOCOLATE CAKEEEE" so we got her that (i know i know, i complain about Sean can't have chocolate, but Meghan does not have ADHD/ASD or anything...) But when we got to it, she didn't want it. Also, did i mention we had her hooked up to her pump while in the cart? lol that was cute trying to finagle that. She finishes her feeding and we let her out on the condition she holds my hand. Oooooo no. She didn't want to hold my hand. She wanted to sit on every couch and run around every "living room" setup. So, I finally get her (she was laughing maniacally and running around like a madwoman) Then I heard her gag, so I found the nearest trashcan and held her over it. She made it in, then I asked if she was done, she said "alright", and I went to put her back into the cart. Yeah, she threw up allllll over me, herself, and the floor.
She was happy through all this. Shes never acting sick when she vomits...did I mention we have surgery for her this week? We have to get a hold on why shes vomiting.
Ummm what else. I got My friend Jenny a bunch of things for her baby thats arriving soon. I can't say what because she may read this. I also got some glasses. Looked at some curtains and rugs. But after the craziness with Meghan we had to wind down the night.
We went to Target on Chemical Rd. Yay. I love that one. I miss the days I would go with Beckie. This was before Meghan. We would just take Emmie and Sean. Seans such a good shopper haha (not at the grocery store though)

Yesterday, I wanted to go to my friends and watch the (horrendous) game, but the tv wasn't working, so my friend and I just kinda roamed around. Ended up in Limerick (not the outlets), stopped at my friends gravesite, then ate at iron hill in phoenixville, all ending up at Molly Maguires for Karaoke. I'm sure there will be pictures up later. I definitely prefer Penny Productions, but I had a good time.

Ok, I wrote all of this hours ago, but apparently failed to hit publish post... so here goes.

resolution?

2010-01-02T21:45:00.001-08:00

haha i have never been one to have a single resolution.
this year, i really do have a few though. one being that i MUST get back into playing guitar and doing an open mic night by the summer. 1/10/10 was my initial deadline (did i say this already?) but i'm so not ready. even if i played with my back to the audience lol
Another is really working on Seans diet. I'm going to see if insurance will cover him having a dietary specialist. I TRY SO HARD to monitor the hfcs and the dyes etc. but they're hidden in everything. even ketchup!
I had another one I was thinking of, but now I forget. Oh, getting myself healthy would be great. My cholesterol is still off the charts (and I've actually been eating somewhat better, but i know thats also a genetic thing), my last kidney panel was horrendous. But! I have insurance again, yay. BCBS PPO at that, so I'm happy. Monday I'm making appts with all my docs. Nephrologist is top, Neuro second, Derm third... I have to make sure that all mine are in network. Neuro and my Rheum are at Paoli, Neph is at Phoenixville, and I need to get that Dermatologists name from Laurie or Shannon.

I believe I forgot to mention we have a new additon to this family. Another dog. Pat got this Lab/Husky mix off craigslist (SURPRISE!!! i hate surprises that I have to clean up after. Seriously. He is a cl and freecycle addict). I'm trying to change this dogs name. I don't like cliche animal names. Thats why I have Malachi, Jack, and Casey. This dog is named Whitey. I want to change it to Sid. Not because Frank and Monica had a husky named Sid, but he just looks like one.
I never wanted a husky, but here I am with one. I was attacked by one when I was a teenager, so I kinda felt uncomfortable, but this dogs pretty cool. Monica still has Casey, and I think Pat kinda relinquished our custody of her the other day. That makes me incredibly sad. She was my pup, and I know that I was upset that Pat surprised me with her, and she was uppity etc but I MISS HER. She is a beautiful fullbred Corgi. if you didn't know the story, when Meghan got sick, Monica, being the wonderful friend she is, took Casey in. Monica has an extensive history with animals. She is a certified dog trainer, and owns her own mobile grooming business (Tender Love and Paws, she does great work!), so I knew Casey would be going somewhere that she'd be loved. I'm forever in debt to Monica, seriously.

Another resolution, I guess, is to update this blog more often. I may actually do some local reviews of sorts.

I don't have the time at the moment, but I'll leave with this. My friends and I saw an amazing movie at the Colonial Theater in Phoenixville. Its called "An Education". I didn't know of it before, but I really wanted to go to the theater (I love the place for all its character. Definitely a local gem), so I looked on my phone to see what was playing, and that was it. lol We had a great time, and the movie is actually pretty easy to relate to? Its a coming of age story of a british private school 16 year old girl, set in the year 1961. She meets a man who is considerably older than her, 30's, played by Peter Sarsgaard (whom, I was actually taken by in this film for most of it. There was one scene where I literally said "ok, his appeal has been lost" haha but yeah, there are twists and turns that I can't spoil for you. The screenplay was written by Nick Hornby (About a Boy, Fever Pitch, and my one of my favorites ever, High Fidelity.), and also stars Alfred Molina (Who will always be the guy from Species for me; even though he's mainly remembered as the villain from Spiderman 2). I was very entertained, and my friends and I were able to discuss the movie from all different perspectives.

After the movie, we ended up just taking a walk through Phoenixville, ended up stopping at a few friends houses. We thought of stopping at 101 when a group of my friends went, but instead, retired to "the schoolhouse" to watch "What to Do In Case of Fire". This is a film about a German Anarchist group and what happens years later after the "glory days". When a bomb they had set in the 80's goes off and the Polizei are out for blood, the group who had disbanded, and are all in different stages of life, must come together to keep out of prison. Extremely entertaining. In the top five of my all time films, for sure. Its subtitled, but you hardly notice after awhile. Has the most beautiful scene in any movie ever... but I'm not sure if anyone else would agree with me. Its just set to the perfect song, No Surprises by Radiohead off their 1996 album OK Computer.

Ok, I just noticed that I have been on the computer later than initially allowed myself (this always happens) I must change the laundry and go to bed.

one more thing

2009-12-31T13:36:00.000-08:00

I forgot to put that I got to meet Duff Goldman from Ace of Cakes at the King of Prussia Kitchen Kapers on earlier this month. He's awesome.
I told him of my blogs (this one, my celeb one, and my preblog? on lj. lol) and he told me to email his manager, aka his brother, to set up an interview. Thats kinda like a new years resolution, to remember to do that. And to eliminate hfcs and dyes from Seans diet. I can't wait to see the developmental ped in february...

Need to update, badly lol

2009-12-31T13:03:00.000-08:00

Hey guys, I've been so crazy busy, I haven't had a chance to update lately!

Between getting Meghans IEP taken care of, and holidays, and birthdays...time just flies so quickly. Meghan is now in a special needs preschool. They are nothing short of AMAZING! She turned 3 at the end of September, so that made her eligible for the preschool program. Every day they send home her notebook which she has gotten nothing but wonderful remarks across the board. Always "Happy, Content, Plays well by self, and Plays well with others". Good to know that she likes computers lol They are teaching kids computers at 3 now. Makes me laugh because we didn't even have a PC in our house until I was at least 17 or so.

The kids celebrated their birthday party at Build a Bear Workshop in King of Prussia mall. We had a HUGE turnout, and a wonderful time. I always swore I wouldn't combine the kids birthday parties...but it just worked out this year (as I said, stress about getting Meg's IEP taken care of lol) I want to thank everyone for coming out to celebrate the kids bday party with us.

Sean turned 5, he's still at a preschool about 35 minutes away. He loves the busride. He talks about all about his different friends. I want to get him into a fullday program even before he starts kindergarten. He's VERY high energy, and I need him to spend a lot of time in an enrichment type of environment. I'm looking at extra curricular activities for him to take place in. He's also having a hard time going/staying asleep at night.

As I said, Pats working nights, which is particularly difficult because he's beat all day, so I'm on 24 hours a day. (not complaining, just could use a break lol) He loves his job though, so yay on that.

Oh, my laptop died. Thats another reason I went dark for awhile haha But I now have a macbook, and I'm getting used to it. I'm actually loving it.

Oh, this year, I went to my first firebird festival, well, the tail end of it lol then celebrated my birthday at a party in Phoenixville with a lot of my friends. Had a great time.

I worked a whooooole bunch this season. I really love my job at Kitchen Kapers (a link to the blog is on my list). I'm such a geek when it comes to kitchen gadgetry, but its fun. My customers are awesome too, I haven't really met one with an attitude that I can remember. They've all been fun to help out. I worked so much that I was watching my favorite show and could pick out makes and models of coffee machines in the background...including their stock number. My boss gave me a set of 4 le creuset pinch bowls for christmas. :D

Christmas, the kids had a wonderful time over at Aunt Jans seeing my cousins Bridget, Lindsay, Marty, and Katie. Then the next day we went to Pats parents house, and we were able to see Aunt Joanne and Uncle David. The kids are loving all their presents and I'm exhausted from taking them out of the packages and putting them together ;)

The other night, I was able to go say goodbye to one of my favorite people, Theresa. She moves to Florida tomorrow. :( Her and I have had so many good times up here! She was with me when I met my biological family, shes the one who helped me find them. When I first turned 18, I searched, and social services found them, but I got scared. 2 years later, Theresa was like JUST DO IT... and a week later I had 8 brothers and sisters (one who had passed away) and a trillion cousins lol Talk about big Italian family lol

Tonight, Sean is with his mom-mom, and its just me and Meghan. pretty low-key night. I was invited to a few parties in Phoenixville. My mom may watch Megs when shes done work, but I'm not sure. Shes on call tonight/this weekend, So!!!! most likely, I'll just fall asleep early. Plus, the mixture of the idea of snow, and people who are driving crazy because of the holiday... doesn't seem like a pleasant driving experience (I'm still a bit scared to drive from my accident on 8/1)

I hope everyone has a great night!!! If I haven't talked to you in awhile, please send me a message. I miss so many people!
xo

Beauty, Nailpolish, xrays, etc

2009-08-22T09:04:00.000-07:00

For those of you who don't know, I totalled my moms car on August 1. I was on my way to my friend Joyces filled weekend at the Philadelphia Premium Outlets (Helllooooo Max Azria!!). But no, I crashed the car 30 seconds after I left. Patrick was on the breezeway when he heard the accident. He immediately called me.
Ok, so this is the SECOND time he's been an audible witness to a crash of mine. First time was while I was pregnant with Sean. I had pulled out of the Acme parking lot and some crazy lady pulled into my lane hitting my back drivers quarter panel, sending me into a 180. The only thing that stopped me from turning was another car hitting me. They, in turn, sued. Long story there. Which! I'm still trying to get my credit fixed from there. Arbitors awarded a 40k judgement in their favor, but that was turned around in a jury trial.
Anyway, so apparently Aveos sound like when you crush a beer can against your head. Love that. only not really so much.
So, I get a ride in an ambulance. I had airbag dust in my eyes. They said I had a hard time staying awake, but no, I had a hard time keeping my eyes open due to the burrrrrn. Chemical burns on my chin and lower lip, right sided leg, foot, elbow and shoulder pain. Not to mention the considerable pain my head is in constantly.

So! Life has been hard with Pats new overnight job, PLUS we're down a car, then theres the whole apprehensiveness of me getting behind a wheel. :\

I went to my primary, who just happens to share an office with an Orthopedist. His PA's child had a stroke too! It was probably a neonatal stroke, but they can't tell? I was like "First person that I've met *in person* whos child had a stroke!" We had a lot to talk about!!! I hate reliving/retelling the story, but sometimes I guess its cathartic. It really just kinda pisses me off because of...well, I'm not going into that here.
Anyway, so back to my medical issues for a sec. They're not afraid of broken bones, but they're concerned that I may have probably slipped my C1-C2 vertebrae at least. hooray. I'm having shooting electric feelings down my arms and almost like, restless leg syndrome. Its like I get shocked. I hate it. I've lost sleep over it, and Ambien...side effects suck, and I don't sleep for serious anymore. Like I'll wake up after 4 hours. I kinda want to try Ambien CR? but HI! No health insurance right now, and I'm sure that costs a fortune. I mean, Pats Lyrica is already $230/month. Thats not even all his medicine.
Sidenote: You know what pisses me off about Lyrica? It CAUSED him to gain weight. Now doctors are like "lose this weight" Well...its hard to lose weight that was caused by medication. Trust me. I was a health maniac when on (high doses, 100mg every other day) prednisone for 9 months + tapering, PLUS walking up to a 3rd floor apartment, not to mention running around after Sean. I'm kinda afraid that my sluggishness helped create his ADHD, and I feel incredibly horrible. Not to mention the fact that ever since Meghan was conceived, its been all about her. She's always kept me on my toes. Threatened miscarriage, thought I had gallstones, hydronephrosis, (for a kidney patient BAD. Oh you guys know of my FSGS, right? check that out. Its a cause close to my heart. My biological family is EXTREMELY affected by this disease. yes, I'm adopted if you weren't aware), premature labor, magbags, bedrest preemie + 9 days in the NICU etc. The WORKS. all with a year old child. Then she had the tumor, then a freaking stroke! Always on my toes!
I wanted my kids to be 2 or 4 years apart. This sounds crazy, I know. But I have a friend, whos family randomly came up with the cousins are all 2 years apart. So each kid is 4 years apart in one family. I think its a pretty awesome concept. And the cousins actually do fit in lol Sean was 1.5 when cousin #1 was born (then 6 months + 1 day later, Meghan was born) and cousin #2 was born when Meghan was 21 months old (3 days before her stroke).
There needs tbe a psych study done about parents of kids who turn one and what makes them want another child. lol. in hindsight, 2 in diapers wouldn't have been my ideal. especially with the circumstances, you know? lol

Anyway, other than that tangent... Oh, I had to get xrays done. took TEN days to get an opportunity to go. I go to the facility I was told to. I was turned away since I don't have health insurance. I was like "This has nothing to do with health insurance... This was a motor vehicle accident." Too bad. That started a day of trying to find a place to get my xrays. Ended up at Paoli. They're AMAZING. I'm never going to Chester County again. I'm not going to get into why here, too personal. If you REALLY must know, I'll let you know one on one. They were just jerky. LONG story :\

Yesterday was just a day from hell.

I've been extremely emotional lately. Distant. Misanthropic. Not like myself, right? I have a lot going on in my personal life, that I'd rather not discuss here. But its just been crazy. And its all self induced in a way, and its more that I don't have the guts to sever old friendships (aka drama) out of my life for posterity. So I get SUCKED in! Wish I had the ability to just get rid of all that. Its not my personality.

Step in the right direction: My friend Peg will be performing Reiki on me. I'm so excited about this! Nothing in western medicine has helped my migraines, Reiki...is something I've been interested in doing for years. I've done so much research...

also i had a parlay into trying to figure out what my next career move is. 3 candidates. Nursing, but I'm too emotional. Going to Pulse in Downingtown. But I want to do more of the cosmetology than hair. I like doing hair, etc, but makeup and such is just inherant in my nature (Actually, growing up, we always thought maybe it came from biomom, Deborah. The woman wore makeup TWICE in 45 years of life. so nope!). And Peg has opened my mind to maybe going to the Cortiva institute for massage therapy and Reiki training.
CHOICES! lol (and then I think of Friends and Phoebes Relaxi-Taxi/Cab lol)

Oh, a beauty tip that helps me get rid of the puffiness that I have since I almost never sleep. Take some regular old reynolds wrap/alum foil. Put it in the freezer for an hour or so. Cut out holes for eyes nose mouth and wear for 15 minutes. Instate "facial". Its like putting frozen spoons on your eyes.

You guys know I'm a nailpolish junky, right? Well, Courtney Love, on her twitter said something about a MATTE nailpolish. If you know me well, a) Courtney = big deal (i'm a musician, my rock goddess) in my life b) fashion is FINALLY meeting me in the middle. c) Matte nailpolish has been something I've been looking for for years.
so I forgot what she had said, twittered her, and she direct messaged me back (!?!?!?!) while at karaoke on Thursday. I threw my phone at Jake in surprise. Its called KO, and you can get it exclusively at Henri Bendel's in NY. But you can order from their website, sight unseen for $19/bottle. Its cruelty free, more natural than other things out there (Toulene/Formaldehyde free) and apparently stays on longer. I'm so excited to test this. Especially with my lifestyle haha They have some awesome colors. Shockingly, short black or dark nails are in again. (HA! I WAS fashion forward in high school!) Courtney says the black and the burgundy are her favorite. Plus the topcoat, which I usually forgo because of time constraits. I get so frustrated with waiting for nails to finish drying.

oh, and Megs been vomitting. So frustrating. So we've changed her feeding to 220ml over TWO hours. mixing half her formula (peptamen jr w/prebio) with pedialyte. So far, so good. I have to call the GI on monday. dude, GI is so freakin incompetent sometimes. I made so many calls/messages to them...only to find out 3 days later, that the NP is on vacation. Nobody GOT my messages. I mean, shes not emergent, we know the signs of dehydration. Shes not lethargic. Just so frustrating. I hate prevacid, and I don't think its a reflux thing. I think she needs an antiemetic, but they don't like putting kids on reglan. too many side effects (wow half the kids at dupont were on reglan wth?!)

Ok, time to brave sweet and sassy salon for Meghans haircut, then wegmans! wooo

Vegetable Bolognese Recipe MY WAY :P

2009-07-23T11:17:00.000-07:00

I really love Italian cooking. Theres something fun about it. So, here is one of my favorite recipes that I make at least once a week. Of course, not including my italian pasta salad and salsa :P

Vegetable Bolognese
1 onion (i'm going to use half, don't like onions as much, and its what i have left from last night anyway haha)
1 red pepper
2 cloves garlic
2 carrots cleaned, bottom top taken off
6 or so pulses on the food processor (if you don't have one, diced size)
2 ts or so olive oil in pan, saute veggies
kosher salt, pepper
fresh thyme, oregano
cremini and shiitake mushrooms (i don't use that many, not a mushroom lover)
1.5 tbs tomato paste
porcini mushrooms (skipping these. oooooops forgot themmm)
red wine

prepare pasta, rigatoni
bring water to boil, add salt add pasta

both veggies and pasta need 8-10 minutes.
when reduced/thick
1/2 c mascarpone cheese

add pasta directly to gravy, add some of the pasta water (1/3-1/4c) to help thin sauce and help gravy stick to pasta

I'm using parmesan reggiano on top.

Its just as good with the porcini mushrooms. I just buy the dried ones and soak them for a few. because they're perfectly measured, don't have to clean them, and they're actualy cheaper.

Going to post a pic!
hope you can see that.

I also serve it with my garlic bread, which...i think Tastefully Simple's (Lesley is the best consultant to talk to for that :D) Garlic Bread Mix is discontinued, but if its not, i just whip it with some butter, spread it on italian bread, and broil for only a couple minutes (each oven is different. I learned how to burn the bread before making it perfect)

Have fun cooking :)

landscaping...

2009-07-18T17:37:00.000-07:00

I would love a concrete jungle backyard lol All the flowers I bought on memorial day are dead. They looked pretty for a couple weeks. then I guess animals, bugs got to them :(

Now the whole brick patio in the back is ripped up, and grass seed will be put down. I am not a fan of this idea. I want a hexagon brick patio! What we had was okay too. Just the wooden frame was lame and a host for carpenter ants (same as our driveway frame). UGH. So Sean has like, a 4x4 place to ride a bike. and then the rest will be all grass. i guess that works out for the jeep he got for his birthday.
Speaking of; He is getting a big boy bike for his birthday, and a kid guitar for christmas. Because I think 5 is a good year for a bike, and I want to get this kid into music. Put some of that extra energy into SOMETHING. I already know he's artistic. The kid can do my hair better than I can. He's also enrolling in hiphop dancing classes in the fall lol SO! He will be JaimeLynn Spears' kids backup dancer/hairstylist. I swear. He is SO insistent that he WILL go to Britney with me. "Please mom, I will hold your hand the ENTIRE time. I will not get lost. I PWOMISE!" It breaks my heart that I can't take him, since he's a huge fan, but its just going to be too loud and too many people, you know?
Maybe Peter Paul and Mary would be a better speed... (i honestly think 2/3 of them are dead though, so oops) Or even Paul McCartney! I wonder if I'll have the same opportunity with this years tour to be a "brand rep" :P and make the most money for his charity (Music Lives, GREAT charity!!!!!!! something I really believe in. Bringing back music in schools instead of new astroturf every 2 years for sports...) and get free 3rd row floor tix. That was such an amazing time. My mom is still reeling 4 years later that she "got to see a beatle"! As long as its not Ringo hahaha

I'm in desperate need of just a room to play my guitar and come up with some awesome jams. I had a splash of genius a few months ago, but never completely followed through with it. And I'm too lazy to restring the Ovation.
K said when he comes to visit west chester, he'll bring the Telecaster I gave him. I know thats kinda crappy to be like "yo dude, i got you this present, but I had the hopes that you would actually use it, its just collecting dust in Pittsburgh, while you live in Florida, I could really use it" but oh well.

Pats parents are at the shore, and we may be able to get down there sometime this week for a night or two. I'm kinda weirded out about Meghan a) being so far from CHOP and b) beach sand + G-Tube. eek.

Ok, its bedtime! I work in the AM.

no real title here either

2009-07-13T18:56:00.000-07:00

Todays appt went well. Dr Walter explained WHY! Seans is not allowed Chocolate, or Yellow, Red, or Blue dyes. I've already been trying to keep a hold on what he gets of those, but I spend so much time in the grocery store checking for Casein...and Pats always gettin the kid Capri Sun. NO MORE CAPRI SUN! so that means no more terracycle (if you haven't looked that up, do it, and if your kid drinks pouch drinks, you can send them away; recyclable. less in the landfill is a good things)

Over the weekend, I went to Lori and Tim's wedding. Everything was beautiful. The bride, looked amazing! And the bridesmaids were pretty in pink, with Lori's daughter as maid of honor, looking like an adult! Gorgeous :D
We had a great time, and table 14 had the best centerpiece arrangement in the whole place :D Orchids and a floating candle. haha

I'm in a really good mood right now ;) and I'm headed off to watch Intervention, then sleep (I'll probably fall asleep during it; i'm exhausted!)

Goodnight Internet!

I twittered this

2009-07-13T08:16:00.000-07:00

But I hate hate hate hate hate hate Prevacid. I swear. I mean, if it wasn't 100% necessary so my daughter didn't have reflux and vomit everywhere with it... Grrrrrrrrrr Explody. Hooray for wasting medicine that I know costs $450/month (thank you insurance, even though they almost didn't cover it)...the Sol-u-tabs were crappy because they didn't discintegrate, and they were $6/piece because I had to buy them outright.

Ok, off to AI for Seans appt with Dr Walter (developmental pediatrician)
still, rawr.

no title

2009-06-30T20:28:00.000-07:00

today was horrible. had to call 911 from the schuylkill because Meghan was really sick and unresponsive. Got off the highway at Gulph Mills, ambulance brought her to CHOP. they have no idea whats wrong with her. Each doctor has their "idea", well no. Nobody really has ideas. they just want to put their 10 cents in and say what its NOT. I don't care what it ISN'T.
Monday, it will be a year since she had the stroke. Not one answer. Just a myriad of more problems.

I'm an emotional wreck right now. thats all I had to say.

I don't have a title.

2009-06-23T06:51:00.000-07:00

Pat is getting a biopsy on his muscle tissue on Wednesday.
My creatinine was 1.2, instead of .8/.9 the way it usually is. Could have been a fluke, but we're rechecking it. along with my cholesterol, since the last time it was checked, it was like 355. Craziness, but I was on prednisone at the time.

I'm so physically exhausted. i took a new medicine last night, and i just can't fully wake up.

Pat and I lose insurance on June 30th! so we have to get all this stuff done. Meghan has to see the stroke clinic on friday, then next tuesday is the 36 hour fast.

I thought about going to school again. I'm too scared.
So, I'm thinking of putting all my free time into organizing a benefit for pediatric stroke awareness, or Meghan. I have a few friends I'm going to ask to play, and I have to find a venue. I also want to have tshirts/buttons/stickers/magnets/bracelets or something. Idk.

I need something to keep my mind busy.

Quick

2009-06-14T23:22:00.000-07:00

because theres going to be an outage on blogger.com in like, a half hour.

Pat and the kids went to "Meet" Thomas the Tank Engine (don't call him Thomas the Train to Sean, he WILL correct you.) on Saturday. They went along with Pats parents, and his sister, Nicole, who brought her two kids Zack and Dylan.
I, unfortunately, had to work later in the day, but I didn't want to rush them, so I did my own thing. I'm bummed I missed it, but they had an awesome time. This was Sean and Meghans second time going; we went back in Sept 2007.

I ended up meeting up with an old friend from Boston. We ate at Rock Bottom, shot some pool, and when we parted ways, I was able to partake in/enjoy some retail therapy! Hit up MAC to update my look. I'm pleased :D My artist, kept gushing about my eyes, but said that I should also play up my lips because they're gorgeous. I told him to keep going on hahaha Then I was "accosted" by one of those guys from the straightening iron kiosk. CHI is the only one for ME! Then to BCBG/Max Azria, my favorite designer...holygosh. a) 70% off sale rack. THEN! b) whole store (including 70% off?) 30% on top of that. i thought i was going to die of shopping induced heart attack. BUT! I tempered myself. Bought one dress, and its useful. Pat's cousin is getting married next month and its perfect. I adore this dress. I tried on a few different things...Orange is my color. I love rockin the orange. I was warned pink makes me look too young. So THATS what it is!?!? Lets see how this new look works.

Ok, so yeah, I'm back in my Dorothy Parker obsession stage. Better than Pablo Neruda? I guess. idk. For some reason, I just feel blah and bitter. But there are times I'm happy. I can't explain it. I'm going through a lot in my head right now. Probably not a good idea to put it all out on such a public forum. so, yeah.
CNN is depressing. I hate that my mom puts it on and walks away. i've been watching "how clean is your house" on BBC. anything to make me feel better about my cleaning activities. haha Those houses are vile.

I'm trying to figure out how to post these pictures, so...yeah. i'm going to put up the Thomas pictures. Ignore the "PROOF" label. Maybe to be changed later.
Oh, this reminds me. I have to get to scanning the picture from Meghans first haircut. :) And I don't know what that arrow is in that one picture. The first time I posted them, the blog cut off my mother in law Mary, but hopefully that is fixed now.

Pool Time!

2009-05-30T11:47:00.000-07:00

Pats parents just brought us an awesome large plastic pool. I'm sure Meghan and Sean are going to LOVE it.
Traci surprised us with a beautiful bathingsuit for Meghan, Tinkerbell :D I was having trouble finding one piece bathingsuits for kids. I get the concept of "its easier to change diapers", but I'm paranoid about sand etc getting into her gtube site. I'll talk to the doctor about that before we head to the shorehouse...if we go. A vacation sounds so amazingly wonderful, but I don't know if I'm up to be so far away from CHOP with all of Meghans medical issues right now. She had another "blank out" session, probably about 20 seconds long.
She has an appt with Dr Ichord (Stroke Neuro) on June 26. Thats a FULL day thing. lol First an EEG at 9:15. Then we see everyone on the team, therapists, etc. Meghan may be getting new SMOs or even APOs. I'm not sure. A few weeks ago, we had someone from Lawalls (the company who makes the orthotics.) out and he said that her feet had definitely grown out of the ones she had made in August. Well, duh. Her feet are growing at an astronomical rate! Which is to be expected of a 2 year old. She's in a size 5.5, but to accomodate the orthotics, we need to get one size above. The shoes that she has though, Tsukihosi's? They're amazing. the insole comes out so her feet actually fit in them, they're pretty (always getting compliments), lightweight, breathe easily, and...best part ever: machine washable. they look brand new even though we've had them since September.
Seans funny because we had him fitted at Olly. His one foots a 9, the other a 10. lol
Patrick has feet that we have to special order EVERYTHING for. plus, he has "plantar fasciitis", and needed special orthotic shoes. I feel kinda bad, but I always think of Forrest Gump when I think of orthotic shoes. But Pats are all black, and he could wear them to work if he needed. He said he doesn't need to wear them all day? IDK, I wish I'd gone to the podiatrist with him.

Lets see, other updates? no, not really. Today is TACKLE THE HOUSE DAY. Pats dads over, so I'm going to see if Pat and his dad can put up a bookshelf that can accommodate all of Pats books. I hate the way they look on his dresser. They look like they're all going to topple down on someones head. Everytime he goes to a yard sale/swap meet or whatever, he picks up like 7 books. Not my style of reading. This is like Dean Koontz and Stephen King. (They need to take a break from writing books. it feels like every couple months Pats like "omg new Stephen King book, I want it. In hardcover! and then who has time to read right now! wish I did)
All my books are on a shelf in the garage. I don't want to look too pretentious with my reading. I've been accused of being pretentious due to being obsessed with the Beat writers back in the day (Burroughs, Ginsberg, Kerouac...then Bukowski and Robbins. but NEVER the guy who wrote fear and loathing. I can't get into him); and a lot of the other books I read are self indulgent novels, like Normal Girl by Molly Jong-Fast, The Hottest State by Ethan Hawke (yes, the same one) or even Girl in the Flammable Skirt by Aimee Bender, a collection of short stories. Thats all I have time for anymore. Colin Firth has a short story collection out there, prefaced by David Sedaris, another one of my favorite writers. Oh, and then theres Bret Easton Ellis. Ok, I'm in total nerd mode right now.

I miss reading. I'm a total bibliophile. Probably comes from my dad. His bedroom was FILLED with books. Of course, he read things like Clive Cussler and Louis L'amour, but still. Always reading. Thats when I was reading Sweet Valley Twins/High and Babysitters Club. Then sneaking in the VC Andrews Books (which have lost their intrigue and I don't reccommend).

Ok, I'm off. I'm done being antisocial, we have guests and I'm updating a blog hahaha that shows dedication to "sparkle motion" (watch donnie darko for that reference)

Random Update

2009-05-28T17:26:00.001-07:00

I said earlier that Meghans speech is blossoming like crazy. Well, she calls Sean, "Seannnnny!" and she is attatched to him. Follows him like crazy. she wants a part of everything he does......maybe this is a way to get her to eat?
Anyway, so I sent Sean to bed (He was not giving me an easy time), and Meghan got SO upset that he had to go upstairs and leave her. Shes like GOODNIGHT SEANY KISSKISS HUGGGGGG LUH YOU and then she had a tantrum when I finally got him upstairs. But she can still hear him as he is not listening to me, and Pat told him he could stay up late tonight because he does not have school tomorrow.

Thats not how I ran things prior. Everyone had a set schedule. Of course, we don't have continuity in our household right now because Pat and I don't always agree on things. Obviously, bedtimes. Sean would be fed between 530-6, bath at 6, play downstairs (his train table was down here at the time but has since moved to his room), then at 7, he would promptly clean up downstairs and transfer to his room, 730, read a book, sing the alphabet, count, etc. 8 was door closed, he's in bed for the night. Sometimes we would call family/friends (Usually Mom-Mom/Pop or Jessi and Colin) to say goodnight.
Now that Pats home (and thats going on a year); I've lost control of that. (OMG I sound like Kate Gosselin! lol I'm not a control freak like her. I do have OCD, but not that bad. and I've actually lost my OCD due to my meds) So Pat tells him he can sleep on our bed because its too hot upstairs or because its a special night, whatever. Now its become this thing where he HATES his room and tries to make every excuse not to go up there. Then its the drinks, "but mommy, i'm sooo thirsteeee", which leads to "i need to go potty". ahhhhhh

I miss my 8pm chilltime with Meghan. Of course, shes grown, and shes not a baby anymore, so its not going to be "chilltime" haha then I would put her down around 830, with no fuss/muss, get the cleaning done, and the house would be perfect (minus a diet coke can or two lol)

I just can't wait for Pat to get a job so things can get back to normal around here. Abscence makes the heart grow fonder...right? Its nothing AGAINST him; its just a different scene when he's here. um, chaos. He's great with the kids, we just have different styles hahahahahahaha Noise REALLY triggers my anxiety (especially of late) and he's always singing with them loudly, or stomping, and using funny voices. As I said, he's absolutely wonderful with them. But when it comes to putting Sean in timeout, he's lenient. They can walk all over him, and they know that. When I say no, he goes STRAIGHT to daddy. Learned that game quick. I know all kids do that. I'm just so burnt out, you know? I'm on the phone with doctors/insurance/early intervention etc....(don't get me started on yesterday. i had a phone conference scheduled for 11. I was on a train. I could have still done the conference on the train. my mother did not say "oh just call her on her cell, shes probably bored sitting on a train." No, she said, shes not here, you'll have to reschedule." This is Meghans transition into preschool. I want it to be as seemless as possible. Her 3rd birthday = 1st day of preschool. and I have to find out WHERE will take her; due to her feeding tube, etc.)

i just want a schedule. normalcy. a clean house lol (oh, and a dyson animal dc25... if i go to delaware with a bb&b coupon...its like $349. Pat says SURE get that....but I get $350 worth of stuff too... yeah. like I'm getting it for myself. its a toy.)

sigh, end of crazy night. i want to go to bed. but instead, i'm going to watch some slapstick comedy with Kevin James, "Paul Blart: Mall Cop"

And on another note: I was asked to do a few brand rep campaigns! Some different alcohol companies (twisted tea is the only one I can remember), cigarette (camel) and a few makeup demos. I miss those days. $25/hr. This is basically what a model does to supplement income when runways are down, or print ads aren't calling because you're too fat/too old. I need to update my headshot anyway. Right now I have red hair; but thats just a semi perm thing. I'm not a blonde anymore. And you know what? I don't even miss not being a blonde. I've been enjoying the brunetteness. Apparently, the red is cute (good reviews), but I'm due for a real cut and color...My friend who usually does my hair (pretty much the only person I'd let touch my hair ever again) is very busy at the moment. Her son plays baseball, and I'm sure you moms out there know what its like to be a sport-parent. leave breathe sport. heh. So! Hopefully her and I can get together sometime for her to do my hair, and to hang out soon. My calendar is now intangibly open. Sine Die (I knew I took latin for a reason...hooray for dead languages lol)

Hope all is well with everyone. I have such a hard time keeping up, and I miss each one of you muchly. I cannot convey. If you ever want to call; please do.

Update on Life

2009-05-28T03:20:00.001-07:00

Meghans out of the feeding clinic until at least September. That will give us time to figure out what the hell is wrong with her. I'm taking her to the "diagnostic" team, which is basically CHOP's Dr House.
That will hopefully get us into Rheumatology (Its never Lupus...wait, systemic lupus actually runs on my dads side of the family. Luckily, my dads side? they're being forthcoming with information and will help me in anyway I need. My biological sister decided that since I "Blame" Deborah, biomom, for everything in the world...which i do not...anyway, so she won't allow me to access the records. Maybe one of the other family members will help me out), Dermatology, Allergy quicker. Or at least get us on the right track.

Emergency Room....ok, so we're back to "We think shes having seizures" and ANOTHER doctor agrees with me. Now I just have to get it on "film" aka EEG. The facts are they have been witnessed by an MD, the stroke kinda puts her at a higher risk...Shes had more than one episode of "unresponsiveness".

well, no feeding clinic means that maybe we'll have a little bit of normalcy around here? Maybe?
Our lives are crazy. I've been going a bit crazy. I've been listening to Maria Bamford. She's kinda helped me through... because I guess mental illness (ie depression, OCD) is fodder for jokes. But theres this one Youtube #10, Dark...It makes me giggle. I went to the endocrinologist today, but no real answers. I swear, there are NEVER answers.
Just like Pats fibromyalgia. BUT! He got supershoes for his plantar fasciitis. woo. The other day, he screwed up his ankle running to the ER (on the 13th, not 18 hours ago).
Seans doing really well in his new school. :D He loves getting on the bus, and as soon as he gets home, he wants to go straight outside. its funny. his first words aren't "hi mom", they're "run around outside?" He obviously did not get that from me. lol

Oh, another internet show I've been watching is www.watchtheguild.com I watched all of the episodes (they're short, like 5 mins a piece, but there are 20 episodes) Its hysterrical. The lead girl...haha shes awesome. Oh, and I dyed my hair red. Semi permanent. It was a last minute decision. I love it for now, but I think it will grow old quickly. Its not the color red that I want. in order to get that, I need to bleach my hair and put copper over it...think Evan Rachel Wood at the premiere of the Wrestler.

Ok, why am I watching his episode of Dr Phil? I need some freakin positivity! I'm not really depressed, just stressed, and blah. ok, I'm going to stand up and clean.

goosfraba....

2009-05-27T09:58:00.000-07:00

Ok, so I was in philly today because my endocrinologist/gynecologist FORGOT about me...and I was stuck seeing some guy whos not an endo. She said she'd see me today. Shes great, love her and all, but questions weren't REALLY answered. Because quest doesn't have blood tests back yet.

Then, I take the train home, everythings well. I got a call "Aw Man, you should have seen Meghan at feeding! She did SO WELL!"

I get home, get yelled at by mom. I also had a conference call scheduled at 11 that should have been routed to my cellphone that I missed about Meghan getting into preschool.

Anyway, I'm all sitting here la la la, get a text "Meghans going to the ER" WTF so her blood sugar was 81. All day, I've been saying GET HER A DERMATOLOGIST because she keeps getting rashy for no reason? Wait did I talk about the rash that ended up being contact dermatitis, that looked just like chicken pox? I'm not sure. Anyway, so shes obviously sensitive skinned and allergic to something. Give me Derm, Give me Allergy. If shes going to the ER, shes not leaving until she sees them. But! I mean, whos service would she be admitted under? Her blood sugars fine. shes just "unresponsive", but I heard her respond to the blood sugar stick. SO! wtf. But the doctors in the feeding clinic feel it necessary to send her there.

OMFG I am so frustrated. I have to wait to get Sean off the bus, then I have to find someone to watch him...MIL/FIL are sick, so they're out. I don't want to ask my brother and his wife because they're stressed enough as it is. I could ask my dad I guess? But his house is all boxed up because they're selling it.

This sets us back, yet another week. I JUST WANT THE GIRL TO EAT!!! is that selfish? I mean, she knows what a spoon is for. She just gags when it gets in her mouth. I want to get rid of this gtube. I'm so frustrated rawrrrrrrrr

ok, i'm going to go cry now. guess i'm emo, whatevski.

crazy week

2009-05-22T15:13:00.000-07:00

Ok, so, Meghan was discharged on Friday. Then she fell out of her crib, that was an ER venture. Then the radiologist that goes over the scans from the night before, failed to read her history and kinda flipped at the ct. Called us back into the ER. Pat and my mom spent hours back at good ol' Chesco Hosp (on my moms day off from there) only to be like "OH yeah, oops our bad"

Other than that, Meghan was supposed to be readmitted to the feeding clinic on wednesday. That didn't go well. Somehow between getting dressed at 6am and getting to the hospital (hour and a half ride), she contracted a rash that looked like chicken pox. That was scary. Took her to her ped, he said its contact dermatitis. He gave us an ointment, and so far, that seems to be working.

Meghan has an appt with Endocrinology June 2nd. Now i'm working to get her an appt with Dermatology to see WHY she keeps getting these rashes. I mean, this is her 4th. Definitely the worst. I also want her to see an allergist to see if theres something environmental that could be contributing to such things. So far MMR shot and Keflex (cephalexin, antibiotic) are on her list. I'm pretty intolerant to a lot of medications, so may be that is on that genetic side....I have at least 5 medications I have reactions to. Cyclosporin being the worst. Anaphylaxis and such. that was fun.

In personal news; did I write this on my previous blog? I'm going back to school to become a nurse. Everyone seems to be on board. The NP at the feeding clinic said that I fit all the right criteria, compassionate, knowledgeable, etc. Which that was a nice ego boost. I'm just worried due to such lapse of enrollment that I will totally fail. I believe most of my "core" classes are out of the way, which is a great thing because taking Algebra again? BANE OF MY EXISTENCE! i can do the math; I just come up with the correct answer in a completely different way than what is expected.
I was tested for such things as a child and this was predicted. My brain works in a completely different way than most. Which, if you are reading this, I'm sure you're aware of this fact. All these random things I say/think, it all makes sense in my head; its all in context!

Lets see, other news? Pat messed up his ankle running to the ER last week. He's getting an xray of that.
Seans loving school. I just wish he'd remember kids names and talk about his "friends" that he's met. Everyone is just "friend". and he invites EVERYONE over. Example: I'm on the phone with Meghans case coordinator with EI, Sarah. I'm not sure if Sean thought it was Sarah from playgroup or what, but he's like "I want to talk to Sarah. I handed the phone over, he's like "Can you come over and play? Bring your kids! We can play in my backyard. My daddy just cut the grass" LOL

Amazingly, even after everything both of my kids have been through? They're the happiest children ever. Though, funny thing; whenever someone leaves a room? Meghan goes "BYE DOCTOR" she thinks everyone is a doctor. *sigh*

Hope everyone has a great Memorial Day Weekend, and if you're headed to the shore, hopefully its great weather! I was invited to a show up in N. Jersey for Sunday, but I have to work. I'm really bummed, but getting as far as like Patterson, NJ just doesn't make sense to me anyway now that I think of it. I don't think I could stand being so far from my baby. (Ok, shes a toddler, but shes always going to be my baby)

Have Fun!

LIVING at CHOP

2009-05-13T16:06:00.000-07:00

ok seriously. This stuff has got to stop! Poor Meghan, shes admitted to the Endocrinology unit. 8S. She was lethargic. and her blood sugar was 30.

Nothing to report because nobody can get on the same page, and nobody can give us an answer. I'm angry at the world.

So, Pat, my mom, Traci, my in laws....we're all here. I'm so overwhelmed. I can't handle this. I don't know whats wrong. Doctors don't know whats wrong. Apparently the test is to basically put her into hypoglycemic shock........borderline coma.

No room at Ronald McDonald house. like, ever. so I have to go home. I have to take care of Sean. Then get up and leave at 6am and go home. I may stay at Tracis after doing a bit of cleaning, depending on what time I actually GET home.

More CHOP

2009-05-12T08:23:00.000-07:00

Meghans been doing VERY well at feeding clinic.
Pats been taking her, because she seems to do so much better with him than me. She tends to work better for guys. I need to have her visit her "boyfriend", Nurse Joe, down on 2A.
Sometimes I miss duPont. Not LITERALLY. but omg is this place big. its so easy to get lost. after like 3 days at dupont, i knew the ins and outs. lol CHOP has 8 floors. 4 or so buildings...doctors appts are in various buildings, Wood Center, Seashore House, Main Hospital... 2 cafeteria/food courts, an au bon pain AND a mcdonalds.

sigh. Its like a compound up in here!

But! Meghan is getting formula on a spoon, and shes doing great with it. She just had speech/chewing therapy. She did well with chewing. She attacked Fruit Loops. only to spit them out, but she allowed them to invade her mouth! not only did she nibble, she let it touch her tongue. Yeah, she did gag a bit. but! Yeah. still. in the right direction.

We're trying to get her feeding volume right. And caloric intake. Shes on Peptamen jr w/PreBio, right now her 4 bolus feedings are 220ml over an hour, with 20ml flushes before and after. (quick conversion. 250 ml is about 8 ounces, 5ml is a teaspoon) She was on 250ml/hr, but she was vomiting. :( 250ml has 250 calories. SO its safe to believe that 220ml has 220 calories. lol I'm calorie counting for my daughter. Such irony.

What else...Mothers day. I worked. The day before, we had a girls day out. I'll post pictures later, but Meghan had her hair cut, pics taken, the whole nine. Mommy splurged at Sephora. Smashbox Eye Primer, Fracas purse roll on (I have the spray, but I'm needing another one, didn't feel like spending $75 JUST on the perfume at that point), oh, and I got a blush that I'll probably take back. Also at C.O. Bigelow. I got Fekkai Beach Hair, and Jonathan Redo (does he still have a show?). My initial intent was to buy a Tiffany key necklace or the Somerset Ring, but Tiffany, although classy, is so freakin passe anymore. Teenagers wear things from there. Ridiculous. There were more teenyboppers in there than adults. Sad thing is, they all had credit cards! (no economic ranting here; i'll keep it in my head). I decided that I didn't like the key OR the Somerset ring. neither of them really go with my other jewelery. Can't put sterling next to *this* points hahaha (I have an antique almost art deco kind of phoenix looking ring. 5 yr ring.) Oh, and the atlas ring i wanted was a bit more than I wanted to spend (1100, yeah, no.)

What else....Sean stayed over at my brother and sister in laws house. They are married now YAYAYAYAYAY Its great to have a new sister (officially) :D the wedding was gorgeous, even though it rained. Perfect timing with the Cherry Blossom season though. they have pink cherry blossoms in the front yard, we have white in ours. I think I want pink.

Last week was insanity. Don't get me started. My moms car died when Pat was driving the baby home from feeding clinic last Tuesday. Serpentine belt slipped...don't know the entire damage yet. My brothers a mechanic, just got to kinda look at it on saturday. It should, hopefully, if the engines not ruined, get fixed by next week. Which phew. I hate being down a car. i have stuff I have to do when everyones at work/feeding clinic. Like I COULD be grocery shopping. but no. We should just rent one, but its so expensive.

This week seems to be getting off to a less hectic start at least. Yesterday was great. Bananas foster ALWAYS sounds like a good idea, but I don't know how good that is for a diet regimen. I'm trying to train, but its really difficult with timing, etc. Running a marathon...would be nice.

Oh! By the way. My friends at www.classymommy.com and www.chestercountymoms.com had a spot on 6abc last night! Mommy Bloggers!! YAY! I'm not sure if you guys can check the clips out on 6abc.com or if anyone youtubed it, but its definitely something to check out. They both have been wonderful resources for me. Giveaways, reviews, articles... Not to mention, that the way I became involved, through playgroup, the women are amazing. They've set up a schedule to bring us meals while Pat and/or I are away with Meghan. (we still haven't gotten into the ronald mcdonald house here. don't get me started on that)

I have to head back to pick Meghan up from OT, then she has another feeding. First its 15 minutes of separation time, then they take her into a room. Maybe when all is said and done, I'll upload one of the videos of one of her sessions so you can see what its like.

Hope everybody is doing well!

CHOP!!!

2009-05-01T08:20:00.000-07:00

Ok, so we've finally had our orientation with the feeding clinic here at CHOP. Then! Straight after, Meghan ended up in the ER with a full body rash and edema. *sigh* Its always something. So, she was diagnosed with a Serum Allergy to the Keflex she was on for Strep Throat earlier in the month, given a script for Benedryl and quite the many hours later, sent home. We had to wait to do an urinalysis. The girl would NOT pee! after like almost 500ml of Pedialyte and 2 hours, she finally peed.
We thought we were going to be sent home trying to catch a "fresh" sample on a baby thats not potty trained yet.

Anyway, all her blood/urine tests came back as they should, and there was no real reason for the edema. Oh! And I saw purpura on her, the fellow was like "not purpura". Attending came in "omg purpura" Yeah, I was right. Not that I like to be right when it comes to doctors etc. lol
But a mothers intuition, DO NOT EVER ignore it. You feel like you need to have a specific test done, get it done. Its really not too much of a bother. If a doctor gives you a hard time, get a second opinion. I'm all about second opinions.
Actually, when all is said and done with this (ha! at this point 10 years?) I think I'm going to get another Kidney Biopsy because, I personally don't believe that I have FSGS. Idk if I'm "cured"; in "remission" or what. But I was told that I'd be on dialysis by now. (btw, hate that doctor STILL to this day. "Don't have any more kids." rawr. Meghan was what I wanted! sorry, off topic. but yeah, not sayin I want any more. Like I don't have my hands full with the 2 that I have already.)

Oh, another thing. Ever since Meghan had her myringotomy (Ear Tubes placed) her speech has BLOOOOOMED. she says everything. Including NO to everything. But her speech is amazing. She says "elephant"; today it was "MOUSE! MOUSE!" She also counts to 5 from time to time. She knows the number 8 (whenever she sees it. even on a commercial) I'm extremely proud of her progress. We work SO hard, and shes still a delightful child. Always happy. Even though, she does have tantrums. She kinda hit the terrible twos a bit late :P I can't wait for threes. /sarcasm.

Mommy had a day out yesterday, trying to find a dress for the wedding on Saturday. My brother is getting married to the most amazing woman in the world. Her name is Traci, and I'm so glad she will officially be my sister (in law, we leave that part out haha)! She has 3 kids; Brittany, Kyle, and Marcus. And my brother has one son, Danny.
We have so much fun. they have bonfires all the time. I'd never experienced one before. I'd never had a tried and true S'more. Me being the indoor girl I am :P
But I'm so excited. I was supposed to go to a Kidney disease conference in B'more, but I'm helping with all the wedding things. 40% chance of rain, the wedding is in their backyard, which is landscaped perfectly. Creek, Pond, an actual waterfall....Man, I should have moved the 2 houses down that I looked at haha That would have been funny.

Sean started school; he gets to go on a bus! He loves the bus, talks about it more than school. To this day, I really can't get him to name any of his "friends". Not even from his old school. I think he's like his daddy and doesn't have a memory for names (not a bad thing!)

Speaking of Pat, he got a callback from Wegmans. FINGERS CROSSED. a) discount? lol b) I love Wegmans c) I hear they're an amazing company. Not even to mention, him getting a job. lol I was going to take a leave of abscence from my job, but decided that it would be nice to work on weekends. I haven't worked in almost a month, and I miss it. Incredibly.

Wait, who loves their job that much? meeee hahhahaha I just like the customers, and obviously, I feel strongly about the things that I sell.

Ok, its time for another round of feeding........9:15, 12:15, 3:15. But I drop her off at 9, 12, and 3, because they have a 15 minute separation time to kinda "buffer" lol

Lets see how this goes. I'm hoping this next session goes better than last. I know I'm in for a long, long haul. Oh, and I got nursing? Too bad Ronald McDonald house has no availabilities for like, ever. I miss the one in Wilmington. I miss Tara, and Sam, and Deb, and all the people I considered my family down there. We went through the worst together; and I wish they lived closer than downstate DE so I could see them more often. Its sad that duPont is like, the halfway point kinda (well, not really, but when they're there, I go visit). Those kids are like nieces and nephews to me.

I'm doing my best at removing expletives from my life

2009-04-13T20:25:00.000-07:00

...but I'm really bad at it. I try not to curse.
Today has been horrendous. Absolutely horrible. Got a bill from duPont. $1500+. Meghans insurance lapsed because someone at his previous employer told us we'd be getting insurance THROUGH July 1 (yes, this is from June...)
This is pre-stroke. This is after she had her MMR shot and broke out into an allover rash. I took her to the ER, and they're the ones who got her into hematology, expeditiously, since her HGBs were low. They were hardly upset about the rash. Also, they hardly did anything while she was there.
CBC. *blink* thats pretty much about it. Doctors "Consults" cost more than a weekend in Cabo. Then when you really need them (idk...when you're childs had a stroke, and nobody pays attention to the fact that she has hemiparalysis for 12 hours? Or when a 2 year olds blood sugar drops to 27 and residents (who are ALL afraid to wake up the attending at 11pm) are scrambling looking for sugar packets....WHY NO GLUCOGON or Orange Juice?
Oh, her blood sugars stabalized (for now), and just because she has bad veins since we've been poking at her for over 3 hours...thats why her arms just TIRED.

But we don't know when the stroke happened (can low blood sugar cause stroke? plus factor in she had anemia, and the dehydration from their inability to find a vein...not listening to my pleas "central line" or "femoral stick", those cries were met with "we only do central lines on babies who are under 1" ...but wtf. you can't find a vein? you'd rather her writhe in pain? No fucking wonder she hated everything in a white coat or scrubs for the longest time.

Yes, I'm bitter. I'm pissed.
My favorite part of the day that I found out that Meghan had a stroke? Was when I called Craig at Kitchen Kapers, telling him "um, i don't think i'm going to be in tomorrow, my daughter has a mass on her brain..." "?" "could be a blood clot, meningitis, or an inoperable brain tumor" "oh, well if its meningitis, let us know because Amy's pregnant." ......Though, nobody let ME know when I was working with someone almost everyday who was diagnosed with meningitis?!?!?!? and I have small kids (so at that time, meningitis actually WAS on the table. BECAUSE of that person. Now! I've never actually confronted the Meningitisinfected person, but I'm wondering if it actually WAS, because I'm sure the CDC would have said something? idk. Anyway, thank you Craig for being insufferable. Thank you for being such a jerk through all of this. Thank you SO SO much. I appreciate it.

I'm NOT on the schedule, though, nobody ever TOLD me I'd been terminated. so, wtf. As I said, I called corporate already; they're keen to the situation. I should have filed complaints on Craig the whole time I worked there. Him with the "Britney Spears" comments. The messing up every single thing I accomplished (including, DOWN TO THE smallest, that he's so fucking smug and proud of) the stupidest thing. I used to organize the SnippyClips or wtfever they're called. They're cute, nice, but overpriced. should be .99. anyway, I'd organize them, work hard on it. He'd shake the box up. Just stupid shit like that. He wasn't my manager when I took time off for Meghan. he was the assistant. Then Amy had her baby, and apparently someone in another store went crazy and got fired--hence the Craigomotion. blegh.

He always talks about his dead parents, even to customers, its freaky. (And I get in trouble when I compliment someones baby/stroller/sling whatever. People do not need to know I have kids. But having dead parents that you had to cut gold off their dead fingers to the UPS girl is A-OH-KAY! I also used to get yelled at when I'd take a picture of my displays that I'd work very hard on. I'm sorry, I'm proud of them.

I have nothing else left to say. I'm just venting. But I'm still very pissed to the core about everything. and I know that I made a leap, hoping theres enough of a transition phrase in there to make everything kind of come together.

gr. i'm just pissed.

Random Nonsensical Post

2009-04-10T07:32:00.000-07:00

Its been a good couple weeks. Other than the whole insurance debacle, and work...issues. Things have ended up working out well.

I contacted a lawyer who was going to go to the "Hearing" at Keystone Mercy, but they overturned their decision prior to the hearing. Jordan Rushie is amazing :D
I'm just upset with the insurance company. Their job is to deny; sometimes in incredibly dire circumstances. And I would NEVER, EVER, endorse Michael Moore. EVER. I couldn't watch all of Sicko though because it was just hitting too close to home.

I had a few of my closest friends over a couple weekends ago and it was a hit! Lesley brought over a lot of her Tastefully Simple dips, etc. and a Chocolate Martini, that was apparently to die for! If you're interested in buying from the site, her Consultant ID is 0087068, otheriwse, the main site isn't working to let me link directly to her website. The boys played xbox all night (what else is new :P)

My friend Libby had her baby! Isabeau! :D

We went to Penn Pain management clinic for Pat, they want him to do PT 3x/week. And see a pain psychiatrist. I've heard great things about water therapy. He also went to a podiatrist, he has to take a few meds for 2 weeks, then he is going to get cortisone shots in his feet hat will hopefully help! Lets pray that he gets back into tip top shape!
Meghan contracted Strep somehow, while Sean was able to avoid it. But Meghans had quite a few sore throats since her stroke, this is the first time diagnosed as Strep. OF COURSE! Being on antibiotics makes for fun diapers....and this pushed back the feeding clinic until April 28th.
Sean starts a new school on Tuesday, yay! He gets a bus at like 11:15, then gets home around 4, all depending on who is getting picked up/dropped off that day. I'm so excited. Its in another school district. Total cow country. To give you an idea, if you're familiar with the idea, we ended up going like 3 miles too far and ended up in a place called Oxford, that I'd never been to. Its out there.
I've been following with the hemotologist, my platelets dropped to 115. The spike was due to the Decadron shot I had in the Brandywine ER (did I blog about THAT experience? NEVER A-GAIN! Why I didn't just hitch a ride with my mom to her work @ Chester County ER....oh well)

I received a postcard in the mail from my friend Dan who went to Slovakia. the place seems like an interesting country. The church on the post card, Cathedral of St Nicolas in Presov, looks beautiful.

Na zdravie! (Slovak for To your Health!)

New Life?

2009-04-01T23:49:00.000-07:00

Ok, as much as I freakin ADORE kitchen kapers, have i said ANYTHING against it in my life? Other than maybe Craig gets on my nerves?

I had a conversation with my mother and Pat about work. Work is just that, work. You're not supposed to enjoy it. You're supposed to see it as w.o.r.k. No. I've never worked somewhere I haven't enjoyed (ok, small lie. i hated Einstein Bagels, but promptly said eff it)

Anyway, since that foray, I've enjoyed everywhere I've been employed.
After not being put on the schedule for 4 weeks (and craig can say til hes blue in the face that it wasn't because I called out one day, that it was because Roy needs to switch his schedule.....But the key is communication. TELL Me you're not putting me on the schedule for reasons. Maybe I could work something out. work on a saturday instead of sunday.), I needed all the money I could get, for obv reasons. Especially since I'm going to be going back and forth or stayin in philly every day for a month (minus weekends, which I was looking forward to working on sundays. thats my ME! time)

Anyway, that brings us to today. I asked if I could use the fax machine; that was fine. THEN! after an hour of being there, I get a phone call from Keystone Mercy saying blablabla we're not going to accept this because its not life or death (aka staff nursing) Of course, I can't talk while at work, and I'm supposed to be at work til the insurance company is closed (no break. "oh and remember that people can't call in when you're on the phone." so yeah, couldn't call" Well, my child is more important. "can't your husband or your mother do it?" No, I'm her caretaker, plus, they were taking the kids for a physical. Same tomorrow. Pats getting root canals (i always want to type route canal because it just seems more appropriate) So, I called out tomorrow to.
even though I wasn't sure if i was terminated, I called Todd later and asked if I were still on the schedule for tomorrow, and I was. I'm still waiting. I'm in the grievance process. expedited. I have to be available. So, sorry. no work. Kids = More important. at one point, Craig said to me "Kids or Job?" and I was like "...are you fucking with me? My daughter is and always be my number one importance. as much as I love le creuset/scanpan/and all clad? I didn't birth them. They'll do fine without me or a few days"
rawr.
Then I started bawling. nice old men tried to help, but i didn't want to get into it. then a woman stopped, and shes an advocate for patients with keystone mercy. She said keep fighting. "they're the reason we're AT this point"

Got home, FLIPPED OUT at the woman. first words were "Hope you're happy that I've lost my job to come home to work this out" and shes like "I can't believe youre coming at me for this." ..... You deny my daughter feeding, because she can live with a gtube forever. (trust, i'm sick of the thing. I want to throw it out the window. I don't know which I hate more. the zevex or the joey)

umm what else. oh, i stayed at my brothers last night, with the kids. they helped me enormously. I love having family close by. I'm so grateful that my brother and I are back together. His wife and stepdaughter are amazing. (not to mention the other kids haha) i enjoy spending time with them
Saturday, I had some friends over. SUCCESS. amazing. I love my friends.
I love my chiropractor, even though i can't get to him as much as possible. Ray Resnick, across from Ron's schoolhouse.
New Target is meh. Not my Target. at least not yet.
Oh, my brothers friends are going to help us with the house. Stairs are being ripped out. not up to code. Inspector should have seen that. I'm even thinking of putting a wall up instead of spindles. Idk. I need opinions. I should take pictures.
Kitchen needs tiling. My bro and his wifes kitchen is being tiled as i type.

i'm trying to put positive to this post. because yes, i'm stressed. but i try to stay positive. its my other blog that i really bitch in. i mean, i try not to curse in here, and I'm sorry if I offended anyone by using profanity. But yeah, it slips.

on the most positive note i can think of: I love Alton Brown.

So, I may be in the market for a new job sometime soon. Although I adore my job. I love what i do. People see that I love what i do. I freakin hate coffee, but I talk like I work for Starbucks.

okokokok my laundry is beckoning me. i must go.
I need a job where I can make more than $8/hr after two years of working there. One raise in 2 years. (Not the companies fault) Oh wait, can I get in trouble for talking about how ~~little~~much I make? pfwahahahaha you can laugh at me. thats ok. Its because I like the perks of working there, the customers, MOST of the employees aaaaaaaaaand everything about it. :\ But truthfully I need a new job that I can make good money. Clerical job would be wonderful. Shiiiiiit the job i had at Roberts was amazing. more money and less work. (i said i'd stay positive, so i omitted the last sentence. thank you and good night)

Quickly...

2009-03-11T10:29:00.000-07:00

Ok, shuffling between appointments for Pat, Sean, Meghan and I...has been interesting. for lack of a better word.

It seems like every single doctor we see only has openings hours apart from each other. Sometimes spanning from Wilmington to Philadelphia...sometimes Exton to Coatesville.

I've gotten Patrick into the Penn Pain Management Clinic. Woo! Meghans about 3 steps closer to starting Feeding in the Day Hospital @CHOP. We had an appointment on Monday (after Seans dev ped appt at duPont...that was fun. Pat and I took Sean in the morning, my mom brought Meghan, we switched kids and cars), but there was confusion about Megs appt. All in all, they were able to see us, and they accepted her. Now we just wait for Insurance to cover it...also she has to tolerate her new feeding schedule. I don't think she'll have a problem with it. Its all at night. 5p-5a, every four hours over an hour. Reducing the volume, but i believe its upping the cal intake. Shes currently on Peptamen Jr, she starts Peptamen Jr 1.5 tonight.

Lets see how this goes.

Sean is doing SO well. He's behaving, most of the time :P (he's still a 4 year old haha) and he has such good manners. Its like he's been studying Emily Post for bedtime stories lol

I am now finally seeing a Hematologist for my ITP. A new obgyn, that I'm not so much a fan of, so I may get a new one. I had an ultrasound yesterday (no, not the "theres a baby in my tummy" type...Sean has let me know, no more babies in mommys tummy! and i concur. He asked me "where do babies come from" the other day. ha) But the one that will hopefully explain some things. I'm actually on my way out the door to pick up that report, before I meet up with the girls from Meghans early intervention team to discuss whats up with feeding clinic. Not that I really have much of an answer. Oh, and we're trying to get a shift nurse while enrolled in Day Hospital to help me out. Exciting stuff. Really. lol

Hope everyones doing well and hope to talk to everyone soon. i'm sure I'll have more time to update when we're at chop. its just that right now we're seriously ALWAYS on the go with everything. Can't wait to slow down just a bit to breathe.

long time no see

2009-02-23T08:10:00.000-08:00

I've had somewhat of a thought process block recently...writers block or whatever. Not to mention, I've been stressed beyond a reasonable amount.
We've transferred everything to CHOP (other than dev.ped, though shes not even seeing devped, but Sean is!! Long Story)

So, at this moment, Meghan is in the OR. Two hours late....frustrating. but yeah, shes getting an endoscopy to see if her ulcer has healed, and also putting the tubes in her ears.

Shes doing VERY well. Her language is blossoming. She can identify all her facial parts, shoes, feet, etc. Her right sided weakness seems to have gotten a lot better. If she were tested for PT now, she probably would not qualify.

Pat still hasn't found a job, but he's still looking. Theres a Target opening near our house, and he's put in an app there. Not to mention CVS, Panera, Firewater Creek (? some new restaurant in town), and most recently, Whole Foods. This is the job I want for him. EVEN THOUGH! Its far away, it is on the way to philly (so if need be, he'd be able to meet me at CHOP, in an emergency). Its been deemed one of the top 100 companies to work for by Fortune. 20% discount on groceries :P (Even though yeah, I know. Theres more than a 20% markup on organic food. still sounds good to me) Btw, speaking of groceries, there was a study done, and Wegmans came out on top regarding their prices being the lowest. That makes me happy. I am at Wegmans way too many times a week lol (There and Target)

hmm what else. OH! So, I fought with the Insurance company about Pat's medication, Lyrica, and won. Thats $200 back in our pocket every month, and he can function (at least somewhat). Talking to another friend who has been diagnosed with Fibromyalgia, she's been taken off the Lyrica and put onto Flexeril and ...Elavil? something like that. We see his new GP on Thursday. We'll discuss it with him. or the new Rheumatologist (SO BUMMED that we can't see his old one, but her office manager stuck her neck out for us to get this medication covered)
Oh, and he's had a couple root canals last week. Finishing that job on Wednesday. My dental exam went well. Almost 30 years and still no cavities.

ok, they're telling me its time to go, so i'm going to get off here. i'll try to update this more often.

2009

2009-01-08T21:25:00.000-08:00

is supposed to be better!!!!!!!!
My car got broken into and Pats cds were stolen.

Meghans medical records were stolen, but put into our neighbors truckbed, randomly.

cpsc...

2009-01-08T00:47:00.001-08:00

ok, Ralph Nader, you know I love you (you cooky old man!)
but seriously, making it so people can't even resell kids clothes? or donate toys to thrift shops?!

Really!?

2009........its like the twilight zone. from like this stuff, to lj laying off half its american workers.....This year has just not gotten off on the right foot.

In other news, its 4am, and I can't sleep. I think I need to get back to my doctor, I'm having a LOT of trouble sleeping again. Ugh.
Oh, and my internet/cable/phone (only a subsection of my street? wth.) was down for a few hours tonight. Thanks comcast. When I called, they're like "um yeah, I can't see your area" "is it because i'm calling from my cell phone?" "no its just the center you called" "oh, i called 1800comcast" "yeah, blablabla *grumble* transferring to 18002662277" Thats 1800comcast!!!!!!

I forgot to mention: our fish died, So Pat got us 2 turtles. I want our tree down, so I can get our living room back to normalcy. (I wanted it down the day after christmas. along with the lights. its kinda sad that i'm not festive.) The box that the tree came in busted, so we have to get another one...because we have time for that. AHHHHHHHHH i want to breathe.

absent

2009-01-08T00:02:00.000-08:00

I've been absent a month, thanks to holidays, etc.
Sorry about that.

We got good news today! Meghans done with her shots. YAY YAY YAY YAY! After all the hell we went through trying to GET that medicine, we found a good pharmacy that actually drives it out instead of fedexing it *hoping* it will get here in time.
The prevacid is still annoying :\

lets see, what else has happened? We went to the feeding clinic. They gave us new formula to give to Meghan. They said they want to wait until her ulcer is healed until they start. SO! We have an appt with chop GI on Jan 29 to meet with that doc, hopefully get a followup endoscopy soon! THEN! Maybe we can get Megs tubes done at the same time...we meet with the ENT on the 21st. Sean is going to the IU next tuesday for his evaluation. then on the 22, he goes to see the developmental pediatrician.

wow, and after a month, that i've been extremely busy, i still can't think of anything else to write.
Christmas was nice. Uncle Pete helped Santa pick out a train set for Sean! and Meghan loves her shape sorter and different toys. I got a Wii and a GPS (now I want wii fit, i think) and Pat got a few xbox games and a year subscription to xbox live.
I talked to my dad on Christmas for the first time in awhile. That was nice.

I miss a lot of my friends from dupont, its really weird now that I don't see them everyday. We have to go down sometime this week, (well, probably friday) to try to request Meghans GI records from them. FUN FUN FUN! Remember how fun Health Records are?!

New Years was cool. Pats parents wanted to have Sean for the night. I ended up stopping at my friend Karen's house, then Melinda's for awhile, then ended up at Erin and Rob's house and was able to meet Arizona's son Avery. He's so tiny!

Pats been trying to find a job. No avail :( so frustrating!!!!! I've gotten to work a couple days. I also had my review, which was pretty great :D That makes me happy.

This is my life......

2008-12-05T11:25:00.000-08:00

I should write a freakin book. But it would be put straight to the fiction shelf because nobody would believe the crap that I go through.

SERIOUSLY!?!? The irony of who taught me "common sense ain't so common".....but still REALLY!?!? The pharmacy is giving me crap about Meghans medicine. She CANNOT! Be without it. It has to be mailorder because nobody else carries the multidose vial.
We quit dupont therapy because.............Nothing happens there. She cries. Shes miserable. Then they say "well, if shes like this, don't bring her here." She doesn't KNOW them. Shes in a car for an hour to get there. They're doing the same exact stuff that I do at home, anyway. Down to the freakin ballpit. She loves her ballpit.

I was talking to the social worker from EI about this and I guess she thinks it was a rash decision. (yeah. it was. but it was the right one) Even though everyone kept freakin telling me "you need to get out of the hospital." then she told me she didn't think I was "following through" with anything.......................................................................

ME?! Not following through?!?!?!? Seriously, if this were not a family based blog, I would spurt off expletive after expletive. Freakin ridiculous, thats been my phrase for weeks now. But seriously. I'm not following through because theres something called RED TAPE. Not MY Fault. its the insurance company, and the fact that I can't get a doctor to help me/stick their neck out for Meghan. She doesn't eat. Common sense dictates that FEEDING might just be first priorty...back to that common sense thing. Ugh.

I can't even say anymore. if you know me, you know everything I'm going through because I can't shut up about it. As I tell people, My full time is to be on the phone acting as advocate for Meghan, and for the rest of the family, as needed. I work my ASS off getting Meghan everything she needs. And for someone to tell me that I'm remiss in MY duties? stfd.

Lemon Out (if you get that +1000 points)

Sorry

2008-12-04T14:53:00.000-08:00

I haven't been updating much.
Things are insane, and I think I need a bit of a break.

In Meghan news: Things are still going nuts with feeding therapy. I wasted 2 weeks trying to get Meghan into Hershey. Now they're saying they don't take her insurance....But for 2 weeks they did, then we got a letter saying they wouldn't.
She still doesn't even have outpatient feeding therapy. UP HILL BATTLE.
So, now I'm probably wasting another 2 weeks trying to get her into CHOPS feeding therapy day program.

I want out of dupont. I don't want therapy there anymore. None. Driving 2 hours for an hour of therapy is useless. It compounds the issue. Its stressful for all of us.

Basically my world is more difficult than it needs to be. Every single little thing you can imagine doing is 10 times harder. I'm not complaining, I'm not saying "oh poor little me", I'm just extremely frustrated. I try not to blow up at everyone, I just have little tolerance for anything right now. So, I'm sorry.

Maybe Pat will get this job at Chipotle and make our lives a *SMIDGE* easier. I know things will be a bit of an adjustment, but you know what? thats a sacrifice I'm willing to take. I LOVELOVELOVE my husband, but him being home is driving me up an absolute wall.

i need to *breathe* and if i don't talk to you personally before christmas, have a good one. oh, and i hope everyones thanksgiving was nice. (Can't wait to see what 2009 brings!!! 2008 has been um, interesting.)

3 o clock in the morning.

2008-11-19T23:59:00.000-08:00

Ok, so I know that I almost never get to sleep. I guess last night I got such a spectacular night sleep, I'm making up for it tonight by not being able to. Tomorrow is hectic, but in a different way. Pats dad is coming over to do some more of the house projects, while my mom takes Meghan to therapy, and I go to my own doctor. I haven't seen him since...february? march? i just remember it was still cold and rainy out.
I'm interested to see what my blood pressure is tomorrow. I'm afraid its going to be high. Last time I was checked, it was pretty high. I wish I could find my at home monitor. Hooray for kidney disease. /sarcasm.
Speaking of Kidney disease, my friend Elizabeth told me about this awesome benefit for a little girl with Nephrotic Syndrome. The main cause for NS is called FSGS (focal segmental glumerulosclerosis), which I just happen to have. Same as my sisters and my biological mom, only mine has not progressed to ESRD/F (end stage renal disease/failure). You can read all about NS and FSGS at www.nephcure.org.

We are completely moved out of the Ronald McDonald House. Finally! lol I mean, the passed couple weeks, we've been back and forth between duPont, CHOP, home, pediatricians, having early intervention, et al. In that time, we weren't able to be at the house enough. Thats ok, now I have all my pillows under one roof haha Totally random, I know. If you know me, you know my random-ocity.

There is a "care-binder" workshop going on at CHOP next month. I'm VERY excited to take part in this. I have the binder, all the records, the physicians cards, but I need some guidance as to how to organize it. With 720 pages of medical records to flip through (not including things I'm trying to get ie The kids shot records from their previous pediatrician). just ugh. I've read a lot of the pages, but there are some that are completely, the doctors writing is illegible.

Meghan chomped on a french fry while we were at chop. She didn't "eat" it, but she got the concept. And she was "dipping" it in her stroller tray. Goooood deal. She also is doing a good job at climbing. Danielle (her physical therapist) will be pleased tomorrow. Speaking of therapy; Meghan has been denied formally for feeding therapy. Reason? They think that the speech therapist should do it during speech therapy. I have a problem with this. I think Language and Feeding should be separate. Maybe work on more language DURING feeding therapy (expressive language, as in yes, no, more, mine, my turn, etc) than working on feeding therapy where Language is the first priority. Also, we looked at a Specialized Nursing preschool for Meghan today. Its around Chichester. My mom and I took a tour of it so I'd be able to tell Pat the good things. he was a little leery about it, but I think he's been reassured. Meghan can't go to a mainstream preschool/daycare due to her gtube. If it falls out or something, we have to make sure that she can get it in quickly. The hole closes within 25-30 minutes.

We're watching Tropic Thunder, and I'm going to probably fall asleep. haha have fun.

Fun Day? Not so much.

2008-11-17T17:35:00.000-08:00

Hooray for running around all day!
But last night was so great. Went to the big meeting for my place of employment and came away with SUPER swag. To name a few: (warning, I'm from the school of Alton Brown, do away with unitaskers, but there are a couple I really love lol. theres nothing wrong with a little Kitsch in the Kitchen.)

Shun U2 Knife. I already have the Altons Angles Utility, the 7in Santoku, and the parer, but this is one we're always sold out of and I've been interested in purchasing.
Wusthof 6" bread knife (can't find the link! grr), which can double as a tomato knife. Its got itty bitty teeth to tear through the skin of fruit while not crushing it.
the Palm Zester by chef'n. cute little guy, and it matches perfectly with my palm peeler and brush. The Palm Peeler is the ultimate stocking stuffer. So is the Garlic Zoom. This line of products are great for people with carpal tunnel (too much typing? not meeee) or just general arthritis in the wrist.
Portmerion Sophie Conran Pie Funnel (I couldn't find it on our site!), this beautiful piece sits on top of a crusted pie in the oven as to "air out" steam. It helps to create that perfect pie that does not have split crust or have overflow of filling.
Livestrong Travel Mug by Chantal. Crafted with brushed stainless, this mug will help me get through the cold winter by keeping my keurig or wawa hot cocoa hot! They say it keeps its temperature for 7 hours, and 10% of proceeds benefit the Lance Armstrong association.

All in all, I'm very happy to say that I'm affiliated with this whole company. The compassion and understanding that they have shown me over the passed few months...I can't even express my gratitude enough. After everything was done, I introduced myself to the two of the brothers who are owners. I just wanted to let them know how much I appreciate everything. One of the brothers also has a special needs child and can understand what I'm going through. Thats nice to know :)

Ok, onto today. A lot of waiting. Actually, Meghans opthalmology appointment was at 1...so HOW did we not see an opthalmologist til 4:30??!! Well, they knew about Meghans EEG today. I'd told them, and they said "oh thats not a problem, she'll be seen quickly!" Well, 1:45 came around and I was getting nervous. I asked the receptionist what the hold up was...She said EVERYONE waits 2 hours to see the doctor. Ok, cause that makes sense *eyes roll* So, we told them "well, the eeg is important...if I miss the appointment, she won't get in for another month or two..." So, they said that we could go up to EEG and get that done, and MAYBE they'd see us after. We went up to EEG, and after venting to them (and they were totally with me. they were on the phone for half of my debacle. they agreed that opthalmology was being ridiculous) we got Meghans leads on in 20 minutes. Went back to Opth, and they were like "omg we've called you TWICE!?!" ...they told us to leave and come back. so wait wait wait, la la la, and we got back to a room where a doctor (? i think?) who didn't even introduce himself, basically was like "so...why are you here?" Because she had a stroke in july and dr Ichord told me she has peripheral vision issues "well, i don't even know who that is." Ok, well, she runs the stroke clinic "here?" UGH. SO! this guy wasn't even interested in WHERE the stroke was. he dialated her eyes, she was livid. She hated him. All day she was a pretty happy camper. Even when she was swaddled for the EEG...the tech said "I wish all our patients were this easy!"
anyway, in the end they said "well. she has abnormal nerves in her eyes, but we can't do a real eye test on her due to her age." *blink* ok. So! did I see the neuro-opthalmologist? Wheres dr Liu? wheres the fellow I was supposed to see? Another doctor who I'd never heard of (Dr Mills? Miller?) came in, and Meghan liked him a bit more. I liked him, also. But still, same conclusion.

ok, I'm off. DWTS is on, and I've never watched it? But Lance is so freakin cute.

Quick Post

2008-11-12T15:10:00.000-08:00

I'm not going to get into everything, because I'm running late, and I'm really angry at the moment. So an outline of yesterday/todays happenings in list form :D

we stayed at rmh on monday night in preparation for Meghans surgery on tuesday
got to the hospital at 7am sharp to admissions to sign applicable paperwork
sat in the operation waiting room and met some pretty nice people
Meghan went back for the getting ready, getting into a smock, blood pressure, temperature, etc
went in layed on a stretcher with Meg and then she got her versed
She went in for her procedure
during, Pat and I went to the caf for breakfast
then i went upstairs to the family resource center to get a soda (there was none, so i got hot cocoa) and make a few calls to chop
I get back and Pats looking for me
Meghan has a duodenal ulcer and we received a phonecall from father in law that Sean was throwing up all over the place.
i went back to the family resource center to call the hematologist to see if she can remain on anticoagulation therapy (hooray! for lovenox shots. /sarcasm) they wanted a written report.
We learned the user manual for the mic key button.
I wanted to talk to the doc about this ulcer and see what i should do.
She gave me guff about that shes not Meghans doctor lalala Meghans doc would be back in next monday. She is at a conference (ok, how about someone telling me that when I scheduled, or even better yet, why did the doc tell me she'd see me tuesday when i talked to her last thursday. huh?)
called the ped to let him know what was up, he says he's only seen ulcers in neuro-kids. Its probably because shes under so much stress (omg.) her body and such.
got home realized the pump was busted.
called GI and asked for an appt. they said "ok, january 14!" SERIOUSLY!? WTF!? My daughter has a gaping hole in her stomach, I don't know whats causing it (yes they took a biopsy, but when can i expect the results? over a choppy cellphone call that will most likely drop because i'll be in the hospital? Can we explain them? am I going to get them via a nurse who won't be able to answer my questions?) So, they said "we'll page Dr Lenza (who! since shes a fellow, nobody knows her by her name. well, if you call her Beth, they do.) and we'll see when she wants to see Meghan. she can fit her in when she thinks its necessary" Ok, but shes not back until Monday, right? ahhhhhh
The Hematologist called me (herself!) and discussed that Meghan needs to stay on her lovenox, she had talked to dr Ichord and they decided together.
Had the pump changed at like, 10pm last night.
Meghans seeing a neuro-opthamologist on Monday. right before her ambulatory eeg.
Today I talked to the GI nurse and she said she could get Meghan in on Dec 8. I asked "what about her prevacid?" calls back and says bump it up to twice a day. Hopefully insurance will cover it. That stuff is expensive. I had to buy it with cash one day and it was 40 for 4 or 5 tablets.
Had a meeting with the social worker from the ARC today. Then I get a phonecall from Manon that Meghans feeding therapy won't be covered. rawr.

See why I'm so angry? Not to mention some other drama-llama. Oh well, it keeps my mind off of things I cannot change, so why the hell not? Bring it :)

I'm going to Cosi tonight to see some friends, then maaaaaybe either somewhere with Shannon, or to see some people from highschool. IDK, it may be an early night though. Pat has 3 episodes of Fringe to catch up on and him and I have last nights House and SVU to watch. I also have massive amounts of laundry to fold/put away. like 3 baskets.
Maybe TLC should pay me to follow ME around every day and then I can hire someone from down the street to fold my laundry. I can be entertaining. Really. Especially when I'm in a mood. I could at least hold an audience. I just don't think people would believe the antics that we deal with hahahaha

This picture describes how I feel

2008-11-08T08:11:00.001-08:00

I wish I could be in bed today, but I have a GINORMOUS load of things to do. Not to mention my regular routine...This morning started off on a bad foot. Meghans Pump kept flashing NO FOOD at me. It was filled. I'm so sick of these bags, I could scream. We had to be to the pediatrician at 9:30, I left at um 9:20something. All due to this pump, which started working as we were rolling out? But halfway there it started its call of doom. I've deduced that it needs to be on the charger at all times. The whole "perk" about the thing? Its supposed to be portable.

But yeah, not to mention that I woke up with that special tickle in my throat, and sneezing my head off. Oh, runny nose, too. I usually just take a Claritin Redi Tab, but NOPE! By mistake, I bought the non dissolving formula. I REALLY WHOLEHEARTEDLY BELIEVE, they should make orally disintegrating tablets for everything. This is why I love Zofran. of course, the part I don't like is the price. The stuff works, so they charge $1200 for it No, I'm not exaggerating about Zofran ODT 8mg. 30 of them is almost $1200. That just so happens to be one of my regular medications. Its ok though because I was supplied with enough to get me through. Plus, they're not as strong but I have the 4mg ones also. Oh but back to Claritin, its usually amazing stuff. Not workin so much today. I have to work at 5, and I'm kinda bummed about that.
Also, its a pretty crappy day outside, and my mood is matching.

We saw Angela, the nurse practitioner. She is great. We have to get another diaper sample and see how that goes. She thinks it was just irritation due to being constipated. Oh, I'm adding pedialyte to her diet. People are agreeing with me. And I have to keep giving her the miralax everyday. We'll see how things are on tuesday. I'm getting a bit apprehensive about surgery. And I'm kinda upset they couldn't coordinate her Ear tubes with it.

I have good news

2008-11-07T14:29:00.000-08:00

Ok, I'll get to the good news after the stuff thats driving me insane.

Meghan had blood in her diaper last night. I freaked out a bit, but when I had seen it before, I was told (over the phone) it was probably fissues. Since shes on blood thinners, it gets bloodier, but its not a risk or anything.
Well, today, while Pat and I made our way to CHOP, my mom drove the diaper over to the pediatrician. I got a phonecall as we were leaving the hospital asking "um..so, i have this diaper here. what are we supposed to do with it?" lol so I went over it. The oncall person last night was supposed to write a note, but I don't think her actual pediatrician was there. But yeah, so they got off the phone to do the test (hemoccult) and it was positive. Very positive.
I called Hematology at CHOP, since I'd just left there, called Dr Lenza, and she called back in a few minutes. Pat was being a jackass while I was on the phone. She found humor in his joking around lol She asked about animals in the home, and Pat was like "if you REALLY think we should get rid of the cats..." blah. Just joking and all, but still. Anyway, shes sure its just fissures. I guess we'll collect a "sample" tonight and get the real low down.

So back and forth on the phone with the Pediatricians office...We're going in tomorrow morning. They're saying its nothing urgent, but we'll figure it out tomorrow.

Ok, I'll back up to this morning now. The bad news is out of the way. Met Dr Witmer, shes great. We have a prescription for new needles. The ones that are delivered are apparently a large gauge, so the ones we're getting now are smaller, and will hopefully cause less bruising at the injection site. Plus, they're nicer needles in general. the numbers on the barrell are easier to read. That makes me happy.

Got home, called the hematologist. She had good news! YAY! Meghan is not anemic anymore. Her blood looks good. Guess its not Thalassemia? Thats good news.
Maybe later I'll type more. I have to get Sean ready for bed. Today has been exhausting.

A Couple Pictures!

2008-11-06T17:15:00.000-08:00

Sean got a power wheels Jeep for his birthday :) He loves it.
Meghan was a cheerleader for halloween, but I couldn't get her to stand still long enough to get a clear picture of the whole outfit :P
the picture of Sean kissing me at Grottos July 16. Was a good date to go.
And the last is from Meghans birthday party.

all this back and forth...

2008-11-06T08:29:00.000-08:00

is making my head spin.

Pat and Sean took Meghan to rehab on Tuesday. She was able to get into the pool!!! The one day I miss, she gets in the pool lol Thats what I was waiting for. But Pat sent me plenty of pictures and video. Not quite the same thing, but it was nice.

Voting was nice. Quick and painless. We showed up early (as seen by my twitter), and I was shocked by how many people were there at darkoclock :P oh, so PS, curse you daylight savings time change. I was getting used to it getting darker sooner, but not quite SO early yet lol
Tuesday night, I figured would be a good time to go grocery shopping because I figured that people would be watching the results. Ok, I knew the night would be called pretty early, but I wasn't expecting 11 (maybe midnight). My blackberry was abuzz every couple minutes with texts from everyone!
I'm a bit disappointed in California. I was pretty passionate about some of their propositions, and 3 of them didn't go the way I was hoping. (I know it doesn't really concern me. But, I have quite a few friends around the state...Anything that infringes on their rights, I feel strongly about) Like prop 7, sounds like a good idea, but it was so vaguely written... But that didn't pass, actually kinda crashed and burned.
For the passed few weeks though, I kept hearing about Prop 8, I was hoping I'd have a groundbreaking decision to make. There was one, but it wasn't really earth shattering. And that was kinda poorly written, also.

All in all, I'm happy to have participated in such a momentous election. Hooray for civic duty :P

Sorry for the quick rant, I have to take Meghan to preoperative testing. Her PegTube is changing to a Mic Key on tuesday.
Tomorrow is Dr Witmer at CHOP, shes a haemotologist. It makes me happy that they have thrombosis specialists there. I'm glad we've made the decision to switch medical services.

Halloween!

2008-11-01T10:38:00.000-07:00

Ok, so today, I was supposed to go to that pediatric stroke conference/seminar at CHoP. I'm really bummed I missed it, but Sean woke up not feeling well (no, he did not eat all the candy...unless his dad fed it to him while I wasn't looking :P), he had a cough, and just wanted to cuddle with me. So, I fell asleep, next thing I know its 10am.

So far, he seems to be feeling better. Hes taking his bath right now. Too cute.

Meghan was the CUTEST cheerleader out there. My phone wasn't taking very good pictures (Hopefully, the new phone will help with that), but Pat got some good ones. I told him to send them to my email, but he's a SLACKER :P

Yesterday went pretty well, I guess. *shrug* It was stressful. Seans on his way to getting the therapy he needs, which makes me happy. I spoke with the coordinator "downstairs" in outpatient therapy about Meghan, we're working on a schedule. I'm just bummed because so far, tuesdays, we'd drive almost 2 hours altogether for an hour of therapy. Then she wouldn't have therapy until Thursday, so thats frustrating. It will work out!!! I am going to miss her therapists and doctors in Rehab. I already miss some of the nurses. Meghans "Boyfriend", Joe only works on Fridays and weekends, so we never see him. I ran into him when I was visiting Leon once and told him that we don't have therapy on fridays anymore.

Oh, another thing. This freakin pump.......grrrr. I'm so sick of it. We had to switch it out AGAIN yesterday. what is that, like, 5 times now? I don't think its the company. and I'm really upset that this supposed WONDERFUL zevex infinity. feh. sometimes I wonder if our house has a huge magnetic forcefield to be killing our electronics.

Tonight is Erins party! I'm so excited, but I have no costume yet. I'm thinking of being Holly Golightly, but I'm not sure.

After trick or treat last night, we went to visit Uncle "Dodo" David and Aunt "JoJo" Joanne. Dodo had a double bypass last week, but he looked really good. Its nice having family so close. Oh, and I miss living in Malvern. We passed the old apartment. Yes, I remember hating the stairs, and the lack of parking, and the various smells coming from neighbors...but we had such good LOCATION. Plus, now they're building a Wegmans right down the road. perfect! Not to mention the large living room. Oh, and 2 bathrooms. Miss that too.

(CNN is talking about Robocalls. Do you know how many we received while we were out last night? like 4. in 5 hours.)

OK, I'm done. I have to go to the store and pick up a really awesome costume, on the cheap :P

Funny Games...

2008-10-31T00:02:00.000-07:00

Ok, the name comes from the movie Patrick just put in...its nothing I'd reccommend. but I couldn't think of anything witty.
My brain is mush. This week has been a blur, whizzed by.

Since I last updated, we went to ENT on Wednesday. Fun FUN fun. Meghans getting tubes, and we're trying to set that up at the same time when she'll already be sedated; ie her gtube switch to button, or her MRI. Tonsilectomy is not going to happen. Her being on anticoagulants disqualifies her. Right now, she is not having apnea, so thats a good thing. Maybe in the future...depending on what hematology says.
The Hematology unit that we've been put in touch with via the stroke clinic is on board. We see them next friday. Turns out they are thrombosis specialists, and that puts me at such great ease.

Also, Sean saw Dr Walter. She said that he's just a normal kid, he's going to need physical therapy because he has hypertonia in the upper body. Not surprising. Other than that, we'll see. She said he's not going to need medicine (yay!) because he's not really um, bad. We're working on 123Magic, and its been working for me.
After Seans appointment, Dr Walter saw Meghan. She witnessed one of Megs "episodes", lasting 14 seconds. I'm happy a doctor was able to see it. Well, shes concerned, and happy we're getting the 24 hour EEG.

Meghan was supposed to get into the pool this week, but it didn't work out.

The kids are jazzed about halloween, but tomorrow is CRAZY long. EI teacher is coming out at 130, Social Worker at 2. Energy Auditor (not having to do with Meghan) is coming out between 1 and 4. We were going to try to get the parade done, and then Malloween, before heading over to Pats parents house for dinner and trick or treat, but I feel like our day is packed tight. If we have to, we'll maybe go to either the townhouse development right here or to the development I grew up in, like a mile up the hill. Ok, that hasn't been discussed with Pat yet. hm.

Saturday is the stroke conference and I'm pretty excited. I don't know if Pats going to be coming with me, but I'd like him to.

Ok, all this talk about tomorrow is making me realize its almost 330am and I should be sleeping. Goodnight :)

CHOP

2008-10-27T17:26:00.000-07:00

I finally got to sleep on the couch around 330. Woke up at 530, got ready, rolled into the car and basically got to philly with no significant traffic issues.
Meghans eeg went well, but now we have to do a 24 hour one. Kind of like a Halter monitor, just leads on the head instead of the chest. That will be at home. So they'll see her in her "natural habitat" :P

There was basically no time in between the appointments. And the doctor came out to get us herself. After talking to the doctor for a little bit, we had an OT, PT, Language/feeding therapist come in. That was a pretty long evaluation. They told me that they're VERY impressed with how she's doing. They see a little bit of a deficit on her right side (particularly her hand), but she is at least compensating with her left, and working on trying to get her right side better on her own.

Then we saw the social worker. SHE IS WONDERFUL!!! And she gave us a big huge binder to put all of Meghans medical records in. I hope Pats going to go with me to the Seminar on Saturday. I think it will do us both some good. Networking is always good. But he's anti city.

We sat with the doctor for almost 3 hours. First, she took my family history. Then Pats limited one, because he doesn't know anything about his side (I tried to fill in the blanks i knew). Then asked if we had any questions. I had a skillion. A couple that were most importantly asked/answered: The one about Meghans hemangioma. it COULD be related, but highly unlikely. The integumentary veins (think skin) and the brain vein (for lack of a better term) are really...well never the two shall meet. Ok, its a long convoluted explanation. There would be no way to tell if thats what it was. MMR Vaccine? Coincedental, though she wants to look into the full body rash that came along right after it. Anemia, it doesn't help. because anemic platelets are "stickier", but (and this is a controversy between docs. man, she used that word a lot...including about the anticoagulation therapy she is on currently) she was really hardly anemic. What else...oh, the MTHFR. well, apparently her homocysteine levels were normal. So, once again highly unlikely. Blood sugar crashing, its easier for younger kids blood sugars to crash when they're dehydrated. Then theres the dehydration issue. That could have constricted her veins or whatever, so that could have had a hand in it. BPA? ehhhhh Shes not convinced. Theres nothing out there now. She hadn't heard of it, but she was investigating it right in front of me, and she said its more about connectivity issues.

BTW STUPID FDA! GET ON THE BALL! I should move to Canada regardless who wins the electoral college popularity contest. (I do agree most of the time with one candidate, but I pretty much disagree with a two party system. I mean, there are other options out there, they should be more highly publicized. I'm very much for Nader, for many reasons. But I can't, in good conscience, vote for him this year)

There are so many "what-ifs", but the doctor settled our fears about everything that had been done. She said that its lucky she was in the hospital. Oh, and the type of stroke she had: Venous Thromboses. They're a lot less common than the Arterial. that works out well though, because the rate of it happening again is like 5%, as opposed to the 20-30% with an arterial.

She showed us the scans, and kinda "played" around with them to show us what they initially saw, which looked pretty bad (when we knew what we were looking at), the swelling looks like damage in certain views, but when you get deeper, you can see where it was a "threatened stroke" as opposed to actual stroke. The spot that was actual stroke seemed like about the size of maybe a nickel? smidge bigger? but the wonder of baby brains is that the "neighbors" in the brain kind of compensate and take up the slack of the scarred area. (Still, the concept freakin bothers me, but my mind is more at ease).

All in all, I am very happy with Dr Ichord. I like her a lot. I know they're probably biased, but I was told she was the best in the country at what she does. And that makes sense. I didn't realize CHOP was #1 in the country. (but one of my friends told me that they don't accept cases they don't think they can solve? i'm not sure about that.)

We're going to see a Dr Witmer for Hemotology, and getting an anti-x-a level due to Meghan being on Lovenox (which is a low molecular weight heparin). And we'll decide how long she'll be on the anti coagulation therapy (3-6 months - forever).

Sean woke up this morning saying his ears and his throat hurt. Pats mom took him to the pediatrician, and he didn't have any infections. So YAY! Tomorrow we go to Dr Walker and we're going to figure him out! LOL Then Dr Walter sits in on Meghans feeding therapy to see where things could be adjusted.
Tomorrow, Sean will be 4. I cannot believe it. 4 years ago tonight, I was in the hospital anxious and apprehensive about having my first baby. Now I have 2, and the first one is such a big kid. Theres a halloween party at Ronald McDonald house tomorrow. We're going to get to hang out with Seans friends, Ganon and Leon. Not to mention my friends Sam and Tara.
I want to stay in DE tomorrow, but its Seans birthday and we're having a shindig with Pats parents. Maybe I'll just go back tomorrow night. Wednesday, Meghan has an ENT appointment. Just because shes had tonsilitis and ear infections a few times since shes been discharged. I wonder if it has anything to do with her being intubated?

My mind runs on overdrive all the time. The doctor sensed that and told me to stop beating myself up. This was in now way, my fault, and that I've done exceptionally well considering. The therapists also said they can tell we're working hard with her at home, and they were impressed by Pats involvement in the whole process.

Ok, I'm off. We need to get up early tomorrow and I'm exhausted. I took a nap on Pats parents couch. felt like 15 minutes. I'm so going to crash tonight. A lot has been taken off my mind.

Good night!

the long update.

2008-10-25T17:17:00.000-07:00

So, thursday started off a bit...well, off. I couldn't find the key to the room the night before (turned out, i locked them in the room. oops.) Meghan had to be at the "rainbow module" at 9:30 to see the Nurse in GI. Her GTube clamp has been loose, and the cap wasn't staying on. SO FRUSTRATING. new load of laundry like, every 20 minutes haha Well, we got there, the nurse kinda insinuated that the whole situation was my fault, so I was a bit peeved. Got it all taken care of, and make our way to therapy. Meghan was NOT happy about being there, total grumpy pants, so I was kinda afraid thats how the rest of the day would go. BUT! She perked up as soon as she saw Manon (her speech therapist). They went downstairs to the ballpit, and I went to see our social worker. I've been trying to get all the pertinent medical records so we can get to the stroke clinic. Thusforward, this is referred to as the bureaucratic struggle hahaha
I was given JUST the discs of the imaging. No paper. I was promised 419 pages. A few phonecalls later, I found out they weren't even ready. Weren't even signed off on from when she was discharged (2.5 months after she was discharged?!) So I cried. Then I got a phonecall from Pat about a company we've been fighting with, so I went straight up to the family resource center and bitched them out. They needed some more information faxed to them, so I tried to do that. They gave me a freakin faux number. grrrrrrr Thursday was NOT going the way it was supposed to.
I went back to the social workers office and asked wth was going on, a few phonecalls later, they'd be ready in an hour and a half.

SCOREEEEEEEE! After picking up the records, I went to put Meghan (who was hooked up to a feed) in the car. I had to unhook her just to get her in...the whole piece that was just changed? Fell out. just poof. formula everywhere. I knew I'd have to go back to GI to get it fixed. I sent my mom to park, and tried to get in the door that I just came out, but I didn't have an employee card...so I had to schlep up the hill and around (oh, did I mention my phones busted, so i tried to call my mom but no dice). I finally got back to GI. Apparently the nurse didn't get the right size for her gtube and BLAHHHH. The doc had to come in and fix things. Just a freakin mess. Incredibly frustrating.

Drove my mom to work, stopped at Ulta to kill some time, Meghan had a pediatric appointment at 4. She got her flu shot and we discussed her quite posssible seizure activity. So, EEG for her!!!

Friday:
After trying to call CHOP's stroke clinic all morning, I finally got an answer around 1130. I talked to the social worker about coming in and dropping off her records. I was told about an all day stroke conference on the 1st, so now that I'm not working and Seans bday party has been put on hold...I'm going. !!!YAY! I wish Pat would go with me, but I doubt he will. He thinks its going to be a hugfust. lol Anyway, so my mom and I got into town around...115. Got to the clinic at 130. was out by 2. I was told that we should expect a call by the end of next week and then we'd make our appointment.
We weren't even to 32nd and market (like 4 or 5 blocks away, but in traffic)before I got a phonecall from them, asking us if we could come in on monday morning. And that her EEG would be right prior to the appointment. I wonder if we'll have the results of that right away.

I needed to stop at C.O. Bigelow for my shampoo and rosebud salve, and I REALLY wanted Legal Seafoods, so we did that. BTW, that chowder even battles Fioravanti for best ever :) Crab cakes cannot be beat.

at 4am, she was vomitting, then again this morning. I called the pediatrician, since a stomach virus is how everything started. I'm talking to her, and the freakin power goes out. I started scrambling around for my cellphone and repaged. She's doing 100ml of pedialyte over an hour every 4 hours. Instead of 220ml of Nutren Jr with Fiber the same. so! fun times have been had by all. I'm looking forward to Saturday Night Live, even though Ms Amy Poehler won't be on tonight due to having a baby boy!!! I'm pretty bummed I missed Thursdays weekend update. And that shes not coming back to the show. I've always liked her and Will Arnett (arrested development is on my list of top 5 shows), and I was wondering if she was listening to the final count down while baby boy was born haha

I'm off for now, Meghans feeling better and wants a hug and kiss. Shes so excited, jumping up and down.

I have a long update ahead of me

2008-10-24T21:31:00.000-07:00

But! Not now. Right now I have to share this recipe that I made...Went over pretty well here! and, its no bake!

Ingredients

* 1 cup light corn syrup
* 1 cup sugar
* 1 1/2 cups creamy peanut butter
* 1 teaspoon vanilla
* 4 cups Cheerios toasted oat cereal
* 2 cups crispy rice cereal
* 2 cups M&Ms plain chocolate candies

Directions

In a saucepan, bring corn syrup and sugar to a boil. Add in peanut butter and Vanilla. Pour over cereal mixture and toss to coat evenly. Spread in 13x9 pan for thick bars or a 11x14 pan for thinner. (I love my new 11x14 non stick glass pan I bought at target on clearance for $2.84) Let cool and cut into bars.

All I can say is, YUM!
About a week ago, I made this recipe called "engagement chicken"
* 1 whole chicken (approx. 3 lb.)
* 2 medium lemons
* Fresh lemon juice (1/2 cup)
* Kosher or sea salt
* Ground black pepper

Place rack in upper third of oven and preheat to 400 degrees. Wash chicken inside and out with cold water, remove the giblets, then let the chicken drain, cavity down, in a colander until it reaches room temp (about 15 minutes). Pat dry with paper towels. Pour lemon juice all over the chicken (inside and outside). Season with salt and pepper. Prick the whole lemons three times with a fork and place deep inside the cavity. (Tip: If lemons are hard, roll on countertop with your palm to get juices flowing.) Place the bird breast-side down on a rack in a roasting pan, lower heat to 350 degrees and bake uncovered for 15 minutes. Remove from oven and turn it breast-side up (use wooden spoons!); return it to oven for 35 minutes more. Test for doneness—a meat thermometer inserted in the thigh should read 180 degrees, or juices should run clear when chicken is pricked with a fork. Continue baking if necessary. Let chicken cool for a few minutes before carving. Serve with juices.

Paired it with some stuffing made with chicken stock, awesome mashed potatoes (thanks Rachael Ray) and the easiest part? Birds Eye Steamfresh Sweet Corn
Had a fullllll plate and belly. Perfect hearty meal for this weather.

I miss cooking. I miss my store. BUT! Back I go! Very, very soon. I'm out of the loop, but I somehow think I'll fit back in quickly :D We have the "Summit" on November 16, I'm so excited for that. Can't beat kitchen swag. Plus, I get to brush up on my product info skills :) Just in time for Christmas.

Real post soon, I promise.

got a chance to update!

2008-10-22T08:22:00.000-07:00

Yesterday was very sad. Our friend Becky's son passed away on Friday night and last night was his funeral. They're from our area, so it was local. Everything was beautiful. I'd become close with his sister, Stephanie, when we were making "7-layer bars" or at least our version of them. I never met Ronald because he was in isolation for months, but I heard such wonderful stories about what a great kid he was.
Cancer is horrible. (duh, right?)

Meghan is in OT right now. I was supposed to see the social worker today to pick up all of Meghans records to take to CHoP. Everyone agrees that its a good idea to get a second opinion. I shouldn't feel the need to justify it, but I do. I've said "I have no allegiences to anywhere. Only my daughter." And seriously, what could a second opinion hurt?
Canada outlawed BPA the other day. I'm sure that BPA played a role in Meghans stroke. The bottles, the formula cans lined in the stuff...the plastic water bottles that I used to mix the formula (I pretty much always used bottled water. I'd get the 5 gallon spouted jugs)...I go over every single thing and try to come up with a reason.
I know I was primed to possibly never find a reason, but seriously, until I get one, I don't think I'll be able to rest. I don't know what the chances are for a repeat, or what are Seans risks??

Oh, I went to the "doctor" myself on Monday. Freakin a. I got a look into what universal healthcare will be for at least the first few years... Spent 3 hours in a waiting room, all for 2 minute checkup and NO answers. My BP was high (155/95), the clinician (doctor? not sure) said "I dont like your blood pressure...I don't like your kidney disease...I don't like that you have migraines with aura." Um, neither do I? "I don't want you taking hormonal birth control." Ummmm I wasn't here for that. I don't want birth control. I don't like hormones... Anyway, so with all those factors she said "you're a prime candidate for a stroke" oh yeah, and my daughter had a stroke in July. *jaw dropped* Yeah. We have no insurance. I can't afford to go see my nephrologist. Or even the medicines that he'd give me that would give me horrible side effects that I wouldn't be able to function (Cytoxan, you are NOT my friend.) I take a cynical view on kidney disease. I just don't think theres anything that I can do to like, stop it. Look what it did to biomom and sister?

ok, new subject, sorry.

Seans seeing Dr Walter (developmental ped) on Tuesday. Shes also sitting in on Meghans feeding/speech therapy. Guess what that day also brings? Seans FOURTH birthday? Seriously. 4 years ago, what was I doing?? I didn't think I'd have a baby in 6 days haha I thought I had 6 weeks to go! My baby is a big boy. Hes doing a good job at the potty. He went over to his friends Emma and Teddy's house on monday. He had a GREAT time. He keeps talking about Emma and how "that guys my favorite. hes my best friend!" He doesn't get the him/her/he/she thing yet.
I think we're having a Build a Bear party for him. don't have the time/date yet. I have to see what the deal with KK is. Plus, Uncle David is having a double bypass as we speak. I'm thinking about him! I know he's going to do great. So yeah, Needless to say, we have other things going on. But! He'll have a good party, and a good time. He's such a happy kid.

hmmmmm oh. Sunday was one of my Besties birthday party. Erin had her big 30. We sang karaoke. We had an awesome time. Its the little things in life that I enjoy. My sunday night "ritual" is one of them. Soon, Arizona's baby, Avery will be born, and we'll revisit to see what plans will be after that....I can't wait to see that lil boy. He must be big. My once upon a time friend's son was HUGE! I haven't seen him yet, and he's 5 weeks old now.
Its crazy how times change, and where lifes roads take us. As much as I need a break, I don't think I would adjust well to less stress at this point :P

DITL? not today.

2008-10-16T11:35:00.000-07:00

lol i wanted to do a "day in the life" project. BUT! i'm notorious for my good idea but never quite following through-ness. Today has been crazy. McCain and Palin are a mile down the road (at least I think they're still there. Everything is still nuts up at the top of the hill). I grew up right next door to where he is. We used to go see GWB land at this soccer field. Good times.
BTW, Debate last night? Classic. I'll leave it at that.
Therapy went pretty well today. Meghan was cranky at the beginning. She didn't want to be in the swing that she usually LOVES. I'm still waiting to see what is going on with developmental peds.
Sean went to the pediatrician yesterday. He has reflux, so we're trying Zantac. I took his prescription to Target (because, as Nancy said, Target is a good place to go for shopping therapy) and also got him a pair of shoes. He's a size 10! for such a small kid, hes got huge feet haha He's not such a fan of them though. He doesn't want to give up his old shoes. They needed to be ditched though. Pat had a talk with him and he decided he wanted to give them to Monicas baby. I thought that was cute.

Today, I spent at Medical Records. They said it should take 3-5 days to get them. I just want them so I can get Meghan over to the Stroke Clinic. I told the social worker "its nothing personal, but i have no allegiances to anyone but her", so I'm going to get second, third, and even fourth opinions if I need. Well, I'll hopefully only have to stop at second. I'd RATHER not have to go to Mayo, but I said "Even if I have to go to Missoula Montana, I don't care." Then my mom and I had a disagreement where Mayo was. I have researched them before because they have a good headache clinic and they're pretty good with FSGS (my kidney disease), so I know my stuff. She tried to tell me it was near Ann Arbor, Michigan. I then said "Um, one of my best friends lives and works right there. I think I'd know if it were in Michigan" And I was right. I took a peek to see how far Mayo is from Mall of America. its like 3-4 hours. Boo.

ooo I just realized I can take a nap because everyones sleeping. I'm going to take advantage of that. Bye!

Youtube...for Toddlers?

2008-10-14T10:54:00.000-07:00

If you know me, you know that I'm a huge fan of the internet (who isn't anymore? lol) and I love to watch videos on youtube. WELL!! Now my kids can be just as informed on whats hot on the kiddernet.
When we were at the hospital, and couldn't get any Caillou (which was NICE for awhile, because no Caillouwhines at least for a bit) or Wow Wow Wubbzy, I would go up to the Family Resource Center and put them on for Sean.
Now, he has his own place to watch kidsafe videos! I know he's going to love it. I don't know when I'll get my computer away from him haha

sigh

2008-10-10T12:59:00.000-07:00

Ok, so I'm at home for a bit. Meghan was at therapy the other day, we thought she had an ear infection, but it turns out being her throat. What is this, the 3rd throat problem in a month? Ugh.

So! I just put on Mean Girls because its pretty much my favorite movie. Has everyone seen it? I'm not a huge Lohan fan, but this movie is awesome haha. Probably just because Tina Fey is involved. oh, and the Janitor from Scrubs. I'm sure we've all had a Regina George in our lives at one point in time. It doesn't go away at graduation.

Both the kids are napping, and Pats in bed too. Nice time to myself. I'm taking a freakin break! I took apart the kitchen yesterday, scrubbed, organized, etc. SOMEONE put one of the formula bags in the fridge and it spilled. That was fun to clean up.

What else has happened in the passed couple weeks?
Took Meghan to the Developmental Pediatrician. She gave me a couple tools to help. This cup is pretty cool. It has a cut out so her nose doesn't hit the brim. I also have to get this thing called the ZVibe. I like the new spoon that Megs using, too. She gets to put her lips around it when she closes. It seems like shes getting closer to eating.

We took Sean to the pediatrician about his hyperactivity. (oh yeah, btw, he's not in school anymore.) Doc said "read this book, get Sean an audiogram, and come back in 2 weeks". The audiogram is on tuesday, and we go back to his normal ped on wednesday. Wonder how this is going to go? I'm waiting to schedule an appt with Meghans doctor for Sean. He may have ADHD, i don't know. I personal think he's a normal kid who just had a crazy summer and everythings going on for him. His life has been turned upside down, too. I think he could possibly have ADHD. I just don't want him to have that stigma, you know?

Oh, we're also on our way to "graduating" from rehab to the downstairs gym @duPont. thats exciting.

Seans up from his nap, gotta go.

Tearing My Hair Out

2008-09-23T18:44:00.000-07:00

Early Intervention...Once a week. A speech therapist and a teacher.
No OT in the forseeable future (remember, OT does feeding therapy)
PT in a month or two.
Whatever we don't get through EI, we have to supplement here at duPont. We see the Devel. Ped on October 2nd. lets see what she says.
Needless to say, I'm a bit disheartened. I questioned why only once a week, got the answer "its a parent teaching module" Ok, well thats well and good, but I think, and I'm under the impression (we have a "team" meeting tomorrow) that duPont wants her to have more. OBVIOUSLY, if they're saying we'll have to supplement. I mean, everyones already been shocked about it. The little box that says "Does this child have communication needs" was checked "No", but the report says that she DOES have communication needs. rawr.

Also, any ideas on a new school for Sean? I've looked into Kesher, they don't have room in the appropriate class. Everywhere else seems too expensive. I'm a babe on a strict budget! lol

umm oh! I got the pump thing taken care of. And Meghan has not vomitted once since getting the new pump (Zevex Infinity), so YAY! on that front.

My best friend from highschool had her baby. He was 9 pounds and 14 ounces. I CANNOT imagine. I haven't seen him yet, and I've only talked to Nikki a couple times.
I miss normalcy. Though, this is my new normal.

Aizys babyshower went off without a hitch! All thanks to Erin and Angel for their wonderful planning skills! She was completely surprised. I made favors. lol A candle wrapped in tulle and m&m's, the specialty colored ones that match her bedding.

We see the Hematologist tomorrow. I'm kind of excited, but at the same time, I know that its kind of a pointless appointment because he has no new information. I'm definitely bringing up this stuff about the BPA in Meghans formula. Oh, yeah. Have you heard? Apparently Nestle (No, they do not have your or anyone elses child in mind), their cans are lined in the BPA that everyones yelling about with plastic and nalgene bottles. So, Meghan did Avent Bottles WITH the BPA nestle soy ready to feed. She refused powdered formula.
I'm not a conspiracy theorist. lol but they did say that this raises the chance of diabetes, heart disease, stroke, neurobehavioral disorders. not saying that Meghan or Sean have any of the other ones (Other than the obvious Meghan having a stroke), but it certainly doesn't help their odds.
Sean has an appt with the same developmental ped, but I couldn't get one until the end of April. Hopefully theres a cancellation or an act of compassion? Not like I think that theres anything wrong with Sean, but I need to get all bases covered. I honestly don't think he's on the spectrum, but yes, he is a little...hyper. Maybe these things CAN be controlled by diet. I'm not sure. Thats why my cousin Bridget, who has worked with special needs children, is going to help me on saturday. Coming up with a meal plan, a routine...Because the last thing I need now is Sean not being suited for a SECOND school.

I'm at a loss. Really.

Good news though, my friends son is being discharged tomorrow! he had his third open heart surgery since he was born (He just turned 1 year in August), 6 weeks ago. This little boy brings such a smile to my face. Leon and his sister Mackenzie (Not even to mention his mom, Tara) have made this whole process a bit more...tolerable.

Ok, its time to watch some SVU to destress. Hooray for new season. I didn't enjoy House as much. *sigh*

throwback to '87

2008-09-04T13:58:00.000-07:00

So, my friend Shannon was talking about her daughter playing with makeup...totally reminded me of fazz makeup and jewelry all in onnnnnnnne lol and then Banana Clips...Man, the 80's...good times. haha

What do you all remember from your childhood? any special toys that you wish were available (maybe still available from ebay?)?

The passed two weeks...

2008-09-04T12:05:00.000-07:00

Have been somewhat crazy. I received a bill from the Emergency Room for a couple thousand dollars. We had insurance. So Friday, I called the insurance company to fix that, and they told me "Ok, we fixed it. It said you had Aetna insurance as of January 1, 2005, but we checked and that is inactive as of Dec 31, 2005. Just have them rebill it, and we'll pay for it. It also says here that you are inactive as of August 19th, but as a courtesy, we're keeping you on until August 31" I freaked out. I called the county office for a reason. they put me on hold for 15 minutes, and it disconnected. Tried again, same results. I called Senator Rafferty's office. They directed me to another number, after that, I called each number they had given me. That ended at Governor Ed Rendell's office. He was in Denver, so I couldn't talk to him. (Not thinking they would have put me through to him, but his secretary was extremely kind.) Somehow I ended up with the Assistance Office's backline, and FINALLY got through. The gentleman there was very thorough, and told me the reason Pat and I (the kids are still on) don't qualify for Insurance benefits is because our income is too high. I explained to him that doesn't make sense because our "income" is pretty low right now because Pat can't find work, we've been at the hospital with Meghan, etc. He discussed options for me...AdultBasic has 50,000 people on the service right now, and 100,000 people are waitlisted.
ROADBLOCK!!!
Saturday we came home, but on the way stopped at the Saturn dealership to get copies of Pats key, which had broken. (BTW, if you ever need replacement keys for your car, they can look it up with the VIN. I love that I knew that from working at a car dealership) each key was $6, which isn't bad. The remote...if it only needs a battery, its like $2, but replacement would be $45. (which isn't that bad. I remember just a key for Nikkis car was like $90 because it had a chip in it).
Pat was moving his friend Robbie and his dad all weekend. FUN FUN!
My cars also sick. Needs a new lock cylinder for the ignition. and a new radio. and a new dome light. all I have to do is thank god that i got the extended warranty.
hmm that brings us to tuesday.
Oh, yeah. last friday, I took Meg to the GI and they shortened her tube. Not only that, but they said "oh the pump shes on now? yeah, its unsafe", so we have to find a way to get this thing called the Zevex Infinity. apparently its the best pump. The first pump still hasn't been picked up. did I mention I hate the current pump? its confusing, and VERY old. think like...atari/commodore 64. It also doesn't keep a running tally as to how much shes already had, so if i have to stop the feed in the middle, i don't know how much shes already had, so I can't say "only give her this much". Pumps are made so they can be userfriendly AHHHHHH
Meg went to the pediatrician on Tuesday. She has tonsilitis! Test came back as not strep. So, thats good. But, we still had to cancel her appt with Early Intevention today. She was supposed to have an evaluation, but shes not feeling herself. So, it wouldn't be a fair assessment.
A really good friend of mine is pretty sick. He's been in the hospital for 2 weeks now, and doctors won't really explain whats going on to his family. Hes being transferred to a better hospital. Hes at Brandywine, and his needs are not being met. Please pray for him. His sister is one of my best friends, and his whole family has always been there for me. They're wonderful people.

Ok, new subject, sorry.
Other than the tonsilitis, Meghan LOVES to be at home. Her rehab days (though this week...shes only had 1 so far) are now down to 3 days a week. TWF.
Sean started school yesterday. He loves it. I can't believe my little boy is getting SO BIG!
We also have an addition to our family...well, 15 of them. Pat used his birthday money to get fish and their accessories (he already had the aquarium). Thanks pediatrician for having fish in your waiting room. Now I have 15 more animals to clean up after :P They're pretty cool for being fish though. Pat got a dalmation molly and a tigerfish. I have a red lyre fish, and the rest are just goldies. I had 3 fish when I was like 12. Andrew, Kurt, and Courtney. Kurt died the day I bought him, so that made me paranoid I was a bad fishmommy. Andrew was one of those ones you win at the Strawberry festival, and he lived a pretty long time. like a year and a half or something.

Well, I'm going back to the ronald mcdonald house tonight. I miss my friends there. Its nice to be home, but I miss my buddies.

Nothing Really to Report

2008-08-24T14:39:00.000-07:00

The passed week I have been inundated with dirty diapers, gtube messes, formula stink, and pump issues.
I have not had a minute to myself.
Pat took Sean back to the house for a few days, so it was me and Meg for a majority of the week.

First thing, the feeding schedule. I was told "8,12,4,8,12,4". I followed. She was throwing up. I thought it was because I was coinciding her feeds with her meds. The Miralax? OMFG I did that last friday, she still has the effects! So, with the puking and the other extreme amount of bodily functioning, I HAD to talk to the doctor about it. I was directed to the Nurse Practitioner, who told me that she was to skip the 4am feeding. Lets see how that would go...WELL Turns out the pump is bunk and its feeding her too fast (um, nobody believes me on that unless their child has been on the pump. Another mother here said her childs was off by 200ml. Mines only off about 75...) I set it correctly, put the exact amount in that shes supposed to get, but it just dumps it in her. So, I get a new pump. Does the exact same thing. I complained, and I'm getting a different generation of the same thing. Shes still puking, and shes found a way to get to pull it out all sneaky like. Laundry EVERY single day. Like I think I've washed the same sheets about 3-4 times each this week.

Tuesday is our Intake for Early Intervention. I'm pretty excited for that!

This week a good friend became very sick. I wish him a speedy recovery.

Meghan ate cottage cheese from a spoon yesterday. That was exciting. I'm allowed to give her "trials" of dry spoon, and then some dipped in puree. She was literally pulling my jeans to "keep it comin, lady!" lol

Pat and Sean came back last night and I'm like ahhhhh. Pat doesn't feel well AT ALL, and is sleeping all day :( My moms nagging at me, because I don't have enough on my plate, y'know? Have to make everyone else happy before I do one thing for myself. Rawr. Sorry, my mood just turned sour due to the incessant nagging in my ear.
I'm frustrated. I need a break. I swear I'm having a "spa day" after all this is done if we have any savings left. :\
Oh, also today I started doing favors for someones party. I'm REALLY excited about how they're gonna turn out. 12 down. like 48 at least to go!!!!

ok, I have to go. hopefully i'll get on again soon.

GTube = Success!!!

2008-08-11T16:04:00.001-07:00

Meghan is now in a restful sleep.
We were told to be here at 8:30, we didn't see anyone until after 10 haha She had the MRI, and during, she was medicated sedated. They started off with a versed spray, which made her GOOFY! not tired at all. She was just giggly at everything. I have a couple videos.
While she was in the MRI, my mom brought Sean, and I took him to Child-Life, like he was scheduled...I guess that didn't go well. While I was back talking to the Anesthetist and GI about Megs surgery, Sean had an "accident". So he ended up going back to Ronald McDonald House, and I went to switch the laundry...kinda chaos. lol
Meghan was put under general anesthesia, and the procedure took a total of like 45 minutes. SO Quick. She was really groggy, and went right back to sleep.

All seems to be calm on that front. lol

NOW! We just have to work on getting this "i-port" business taken care of. Or ANY kind of port. the NP was telling me that theres another one that doesn't need to be changed for five days. I have to talk to someone whos dealt with endocrinology, because they're the ones who deal with the ports most.

Tomorrow, we see Dr Walters, a Developmental Pediatrician, who specializes in feeding issues. WOO thats exciting. She said that she will PERSONALLY work with the school district to make sure she is receiving everything she needs. I'm just concerned because the district we live in....I'll leave it alone. I don't know, I just know of it from a couple of people, and maybe they've got a different perspective on things.

Ok, the Juggler is at child-life right now, I'm going to go join my friend Tara and her son Leon.

9 hours til sedation...

2008-08-10T21:35:00.001-07:00

I'm getting jittery. I'm freaking out about the sedation. Apparently, the mode of implanting the GTube is like...putting a scope down the esophagus, into the stomach, finding the right place (not an exact science) and then punching a hole like its an earring.
Prior to that, she is also having an MRI done, which takes an hour. and somewhere within that sedation time, they're stealing blood to test for more hypercoagulable tests.
I've hardly talked to anyone from home. I talked to Dawn for a few minutes the other night. I miss my friends. Oh, I stopped into my store the other night. I miss that place. Theres a new Assistant, he's pretty cool. Its totally reworked, its odd. New All-Clad display (i love it). And I got to pick up my Shun 7 inch Santoku. FINALLY. only after like, 3 months of waiting for it.
Trying to keep my mind off things........I can't sleep tonight. Our friend let us borrow a couple movies. Pats not in a movie mood. More like a Solitaire mood. or Tetris. He's infatuated with Tetris. We played "Scene It Squabble". Tara, Sam, and I kicked the boys' butts haha

I've tried to prepare Sean and Meghan for what Meghans tummy will look like after the surgery. Sean keeps asking questions. "Mommy, whats the string in Meggys nose?" I've explained to him that thats how she eats, and it may look funny, but when he was a baby, he had one too. I've also told him that shes gonna have a tube coming out of her belly that we'll hook a machine up to so she can eat that way.
OH! She totally pulled over her feeding machine, took the bag off, UNSCREWED THE CAP, and poured all the formula on the floor. The speech therapist (who is thrilled by Meghans progress, just in this passed week. She ate pudding WOOO!), said in 20 years of working at the hospital, shes never seen that. Only one of my kids. Seriously.

Tonight, Meghan and I sat at the computer lab, listening to Laurie Berkner, and a few songs from Yo Gabba Gabba (theres a party in my tummy SO YUMMY SO YUMMY YUMMY, probably would have been a better idea to play that for her while we're trying to get her to eat?) then, of course, I slipped in a Britney song, because it reminds me of when I was pregnant with her.

(boooooo no speakers here!) So, that cued all the waterworks. Then it turns out her "boyfriend"/Nurse, Joe, is leaving for vacation tomorrow. She's seriously in love with him. Shes so funny. So picky, but when she sees him, shes like "OHAI, HERE I AM!", grabs his finger, and tries to lead him somewhere. I can't wait to see her tomorrow, I really just want to go over there and give her a big hug right now. But, she needs her sleep :(

Sorry!!!

2008-08-07T17:42:00.000-07:00

Sorry I haven't gotten to the internet. Things have been extremely hectic. And emotional.

My friend Lana's daughter, Ava Marie, died on saturday. The funeral is tomorrow. I've been an emotional wreck. I'm trying to keep it together, but I'm having a hard time. Ava was 2.5. We saw her a couple weeks ago when she had an out patient appt here at the hospital. She had Neurofibromatosis.
While I was pregnant with Meghan (and most of you know how "fun" that was...), Lana and Ava took me to the hospital a couple times. Funnn blood pressures! :x I was with Lana and Ava the day before Ava had to get her "Halo" extensive surgeries...

ok, I can't talk about that anymore. sorry.

In Meghan news:

Meg has surgery on Monday to get the GTube, without the Nissin (YAY!!!) While she is sedated for that, they are giving her an MRI and taking MORE blood for different reasons she could be hypercoagulable. The MRI is to see how cleared the blood clot is. If it is completely cleared, that is a marker for good things. If not, there is greater chance for more clotting "issues", ie another embolism.

what else? Oh, so, as I've said, her clot was in the thalamus, that is the place that controls Sensory. Since, prior to the stroke, she had sensory "issues" (hated purees, etc), they're saying that this aversion is now amplified. It will take a long, long time to fix this. It doesn't help that she was intubated, and has the NG tube. Time, reconditioning, and patience is what we need.

Though, now that the GTube is being placed, an end is in sight. 2 months after the tube, it will be changed to a "button", and look much like an innertube valve. She will be on continuous feeds at night, plus 3 bollus feeds (meals) a day. We have to come up with a schedule that will fit both of the kids needs :\
We're going to stay here for awhile after she is discharged so she can get her rehab outpatient.

Ok, I have to go. Pat is beat. I'm on Sean duty haha goodnight

Family Meeting

2008-07-26T19:30:00.000-07:00

We had a family meeting yesterday, and all in all, I think it went pretty well.

Meghan has a tentative discharge date of either this coming friday, possibly monday. BUT! This could be pushed back because she is most likely getting a G-Tube put into her stomach sometime next week. oh, and a "port", so we don't have to stick her with needles twice a day. Only once every 3 days. She will be on Lovenox for, at least the forseeable future (doctor said years).
She'll also be receiving the same therapy she is now PLUS feeding therapy when she is an outpatient. We'll be going back and forth, but try to keep our room here at the ronald mcdonald house, so we'll stay here the night before she has therapy. Much better than trying to have everyone out of the house by 630-7am to get to an 8am appt.

We also dicussed enrolling into chester county early intervention. That may take some time, but they say that with the 0-3 children, its much quicker than after 3 (like with Sean, I called in November, a week after he turned 3. they told me they were scheduling initial visits out until february).

We're looking into getting on lists for special needs schools because the doctor said she may possibly need a special needs program through elementary school. I don't know which ones to go for, but I know that I want a small classroom environment. My mind keeps going back to Upattinas, but I think Pats has been turned off by the way I told him of my experience. (which, in no way, was bad. just...different. he doesn't think "cultivating potatoes" is a necessary skill. i say "its the CONCEPT", but he just hears "planting a potato and watching it grow".) I'm very open to different teaching methods. Pat, on the other hand...not so much lol

After the meeting, I spent some time with the psychologist. I really like her. She tried to test Meghan on a few different things, but she wasn't very into it. She had already been cranky, had a looooong morning. After lunch, the psychologist sat us down and took about 45 minutes with a standardized test for the parents. She wanted to know where Meghan was before the stroke, compared to how she is now. I'm going to have a more indepth talk with her on Monday.

We also saw the Nephrologist (kidney doctor), to calm my concerns about Meghan and my kidney disease. She said there was no reason to do any invasive testing (ie biopsy), but I wasn't really looking for that Just wanted to touch base, since there is all that family history. :\ She had said exactly what I was thinking "Not really interested in genetically testing her because that could close so many doors for her." health/life insurance, etc.
Speaking of, Biodad had a tumor removed from his Bladder on Wednesday. It was larger than they had thought. Tuesday he'll find out if its "agressive" or not. (his doctor doesn't use words like benign and malignant) Also, while he was in surgery, his girlfriend and my 21 year old brother Jimmy went to the lobby and there was free blood pressure screening. Jimmy's was so bad, they admitted him. Wonderful. More family members with signs of this stupid FSGS. Beats my odds to hell that my diagnosis was somewhat bunk. A couple months ago, I tried to get into some clinical trials and the like and they said that I had other medical issues (kidney stones etc) that could have caused the damage that looks like FSGS.

I can't think of anything else, but if I do, I'll update again.

oh wait, ok. Meghan is saying a couple new words "OWOW WOW" and "YAYYY" and something that I can't understand that starts with m. lol thats REAL good news. If only we can get her to eat! Pray for that please. Thankyou

Big Day

2008-07-24T09:42:00.000-07:00

Today I got to learn how to put in a feeding tube. Apparently I did a good job.

Scariest thing ever. Oh wait, then theres the learning how to give my own daughter a shot of Lovenox to her tummy. Thats going to be scary. They have a cream that numbs the area, but its only for the skin, not for that wonderful subcutaneous burning feeling, apparently reminscient of Novocaine. *cue bad memories of the dentist*

I found out that installing a G tube is NOT an emergency, so I can't just take her to the ER to get it done. :\

Freaking out a bit. more than a bit. Plus, I can't find Patrick. He stayed at the house last night, and he was supposed to wait for my call for him to come so I could have him pick up stuff that I need/forgot.

My mom is breathing fire down my neck for some reason, so I have to go.

answer! at least sort of. maybe.

2008-07-23T23:26:00.000-07:00

This MAY be the answer, this may be a piece to a puzzle.
MTHFR = Mutated Gene.
Treatment? well FOR HER blood thinners, b6&12, folate, folic acid.

I stress for her because it is strongly suggested that Pat, Sean and I get tested, also. More good news. a) Meghan does NOT seem to have Thalassemia, the type of Anemia that affects those of Meditteranean origin. b) This could POSSIBLY diagnose my migraines. NOT ONLY THAT, but my horrible pregnancies.

Dr Brill asked me "How big was she at birth?" "Four Pounds Eight Ounces" "FULL TERM?!?!" "no, 35 weeks errr she was 5-6 weeks premature. They questioned the exact date because they thought she may have had IUGR" (intrauterine growth retardation, basically where the fetus doesn't grow like they should) "Ahh. you probably had Toxemia" "well, yes, and I'm not sure if I was diagnosed BOTH times, but at least once with..." *together now* "HELLP Syndrome"
Then we discussed Genetics and how since I'm symptomatic, I may have 2 copies, and how Pat probably has 1.

So, we took Sean to his new pediatrician today for his Initial exam. I guess they haven't gotten much information back from the hospital, I wasn't sure if they only heard she had a stroke from me (i had to cancel appts with them while we've been down here). They'd heard she was in the PICU, and told me they've been thinking of her and us.

Ok, on with the Meghan stuff.

Now for feeding therapy!!! Her speech therapist has a "nuk" brush that she twirls on her lips and then we clap and go HOORAY. We're trying to give her positive reinforcement to try to get her to put things (ie food) in her mouth. Manon (sp? speech therapist) dipped it in pudding today. She was NOT having that. Oh, and the other day Meghan tried a cup! There was thickened (with nectar) apple juice, but she wasn't really interested in drinking as much as chewing. But thats still good. We tried a bottle, but the concoction was too thick to come out. We've found that Meghan is a TV Junky. Don't know where that POSSIBLY came from...(I'm really more of a DVR person :P) no, but it comforts her. I brought in her high chair, just as something from home that she may be a little more comfortable in. Plus, they only have boosters here that she just tips back, tantrumming.

EEG Results were clear of seizure activity. BUT from what I saw, they were keeping her calm. I still don't think shes having seizures, and neither does the neurologist. She said that her brain waves weren't consistant with someone who would be having seizures anyway (OK I really have to stop interchanging the words seizure and stroke...) There would possibly be little "arcs" or I guess, artifact.

Did it storm where you are? We went home after Seans appt because we were trying to bypass traffic then WOOO BOY did it storm at our house. the thunder and lightning were right on top of each other. I called our friends at the Ronald McDonald house to thank them for having Sean over to watch Surf's Up in their room and they told me that the playroom in the basement flooded :(
We must have lost power at our house the night before because all the clocks reset. I was OUT last night. So exhausted. Woke up at 8 with Sean crawling on me "waaaaaake up mommy CHEERIOS...WITH NUUUUUUUK" (he says most words correctly except Casey "teetsee" and milk "nuk". he can say them syllabically just together...i think he likes making up words. like me.) But my mom and I are back at the ronald mcdonald house tonight. Sean went to bed very well, so we weren't going to rock that boat haha

Can't wait for tomorrow, have to go to bed now. So excited to see my little baby. Shes so huggy and cuddly (hence the nickname CuddleBug, she hates being put down for anything. I use and endorse the Moby Wrap, btw for you Pregnant friends/family of mine!!! not to spoil a surprise? but that will probably be your shower gift haha) aaaaaand scratchy. She tore up my neck.
Did I say anything about how she was after her nurse, Joe's coffee the other day? I'll buy her a Keurig when shes 16 :) Hell, I'll get her the Breville one.

Last but not least: Planning for her birthday extravaganza is beGINNING. Her bday is Sept 27, but we may do it a bit earlier to ensure warmer weather. Probably going to be at a State Park or an Orchard. Not caring what people say; there WILL be pony rides. quite possibly a moonbounce. Not just a birthday celebration, but a way to get everyone together to see her :)

Ok, I lied ONE more thing. She may still come home with a feeeding tube. Please pray that she starts eating. We haven't had the Barium Swallow study because she hasn't showed interest. Could be because her throats still irritated due to being intubated for so long, could be because shes absolutely picky. But as soon as shes an outpatient, we'll probably still stay here a few days a week for miscellaneous therapies, until either Early Intervention can be arranged, or until shes done with actual Feeding Therapy (which they only have the feeding therapists outpatient, but Manon, her speech therapist has studied feeding also. I'm pretty sure at least.)

I'm beginning to be non-sensical. I need sleep (3am OMG) Bonne Nuit!

Pop Can Tabs

2008-07-20T08:48:00.000-07:00

by the way, ronald mcdonald house collects soda can poptabs for dialysis patients here at duPont. SO! If you drink a lot of soda, and you're able to collect the tabs, i'd definitely love to pick them up and donate them.

Another thing: They have volunteers who make breakfasts/dinners for the families staying at the house, I would LOVE to get a group together to make dinner here and serve it. I know its a bit of a hike, but its a great cause.

(I've had meatballs like 3 days this week hahaha apparently, thats a hit/easy to make)
They're scheduling at least 6 months out, so would give plenty of time to get everything organized.

Just throwing it out there :)

No Results

2008-07-20T08:29:00.000-07:00

OK, not quite the latest, but I haven't been able to get to a computer the passed couple days. (You'd think I would have withdrawal symptoms, but I've hardly thought about it lol)

No EEG results yet. ALLLLLL Day friday I was on the phone with doctors, nurses, staff, etc. Finally around 5, I talk to a doctor that said "ohhh yeah. Meghan...hers haven't been read yet" my expression? *blank* You're kidding me! Next sentence "Ohhh so we're thinking of sending her home next week, maybe 2 weeks." hmmm So, we don't see a Doctor for nearly a week, PLUS one minute, shes "OMG HAVING SEIZURES GET HER AN EEG STAT" next its like "hm ok, well, no real rush on the results, lets just hang out...oh and she MAY be having seizures? but we could still send her home. oh, and since shes not eating, shes going to probably come home on a feeding tube. in addition to the shots you have to give her, and you're right with all the research you've done: thalamic strokes DO cause central nervous pain (which is totally consistant with the pain you're husbands having, BTW) are you going to be okay with all that?" I was a bit taken aback, and really somewhat flabbergasted. Personally, I don't think shes having seizures, but apparently the doctors do. I've gotten 2 nurses to agree with me its tantrum behavior (Meghan knows what the terrible twos are, shes just pregaming), but it doesn't hurt to check anwyay. About the feeding tube. They're only attempting apple sauce. She DOES NOT, has not ever liked apple sauce. Mayyyyyybe if you mix a bit of avocado in... I just don't know what the parameters are.
Plus, I know she wasn't a big eater before (and NEVER in front of other people) but what if the stroke caused something that is inhibiting her eating anyway? Maybe that should be ventured. I just don't get why they're putting a date in sight when they told me in the first place "2 months" and now they're cutting it to 5 weeks?

Shes actually doing VERY well in rehab. Not speech, though. She still only says Uh Ohhh and has a new kinda phrase. I can't even describe it. Oh, but she hasn't lost her fire. She doesn't want something, she swats it out of your hand while you're handing it to her. Shes used her nails on me a couple times. omg are her nails sharp as ever. and cutting them does NO good.

On the Pat front, he's still in a lot of pain. Its hard for him to get out of bed. He's been doing the tennis ball excercises for Plantar Fasciitis, but still= Pain. and his legs are busted BUT! We found a "patch" that may be a saving grace. Its a lidocaine patch. He can put it on his side for 12 hours at a time. He was also using Kwan-Loong (sp?) oil? this woman that was staying at the RMDH gave him a couple ounces and he said that was doing wonders at one point. I joke and tell him he smells like an old man (ben-gay) but it was working. Its just that you have to keep reapplying it so often. So, maybe this patch will work. There is another woman who we hang out with here (her grandson was in the PICU with Meghan, same room) who swears by it. She has Fibromyalgia, also.

I'm sure Meghan is out of therapy now, so I'm going to head down there.

Today...

2008-07-17T14:56:00.001-07:00

They took Meghan to get an EEG because they're concerned that shes having seizures. She was already on Dilantin for preventative measures, but she's making "motions like seizing", soooo better be safe than sorry. I told them she arches her back and cries mid-tantrum, but I'm still glad they're checking. Makes for my peace of mind, anyway.

I ran into an old friend who is actually a Physical Therapist...let me tell you how great it is to see a familiar face during all of this. My friend, Lana, she also had appointments today, so I got to see her when we brought Meghan down to the Caf for lunch (umm best hospital food I've ever had lol)

Last night I landed in the Chester County ER because on top of my "regular ol'" migraine, I had new symptoms. My arms felt tingly like they were asleep. So that pretty much freaked me out. But they gave me some Prochlorazine (Compazine) and Benedryl; that made me feel 75% better. They gave me something else, and that brought it up to 95% better. Today, I'm like new.

I was able to hold Meg for a LONG time today, we watched Ice Age and half of the Lion King. The commercials on before the Lion King were a throwback! They're like "June 1995! Look for POCAHONTAS!", thats going to be the "Dark Ages" to my kids hahahaha ahh I can remember it clearly though. Birkenstocks and Alanis Morrissette Not to mention the Lemonheads :P

ok, I am going to go back to the hospital to ask for the results of the EEG. More news when it develops!

I have 8 minutes

2008-07-15T13:20:00.001-07:00

lets see what info i can type quickly, edit later! haha

Meghan walked by herself! At first she was holding Pats fingers, but she ended up pushing his hands away and did it on her own. When she sees something, she wants it.

The reason I only have a few minutes is because she is right next to me! I'm limited in where I can take her, but I came up to the family center to make a call and type this. I don't want to take her outside because its hot, and some of her medications make it easier for her to burn.

She also had a block that she just DID NOT want, either that or she wanted to express her vocal stylings. She kept "dropping it", but she didn't get the satisfaction of hearing it hit the floor...finally after the fourth or fifth try she got that sound. I said "well, she must have wanted to make sure it was really gone." Then she exclaimed "Uh ohhhh"!!!! At first, I had my normal reaction, "Meghan, its not uh-oh if you do it on purpose!" then I'm like Wait! You talked! lol so that was exciting. She said it repeatedly, and in front of nurses. Its so much nicer to have her do this in front of people who write her charts!
She also walked in front of the rehab doctor. She was impressed. She kept saying "Really Good. GREAT!" all while hiding because if Meghan saw her, she'd instantly curl up into a ball and try to hide. The doctor said "see her wobbling back a little bit? thats good. that shows she has good balance." which makes me happy.

Okay, that was my seriously quick update for the afternoon. Maybe some later. I think I may stay at the hospital overnight. Even though I don't know if I want to be present at her sessions. Pat and I are more of a distraction than an asset. She just wants to be held most of the time. (Don't get me wrong, I'm adoring it. But I want her to show her stuff!!!)

ok, ater on. Shes stirring! Bye

I really, really can't sleep

2008-07-14T03:00:00.000-07:00

No real news at all. Pats sleeping at the hospital tonight, so I came home with my mom because she works at 11am. Plus, I missed my cats, and have to go to the bank tomorrow to cash my paycheck (they don't have Citadel in delaware)

Umm OH ! SO I found Meghans first picture from the hospital (not first picture, but the one they took) Notice 3 things. a)She doesn't even look like that,b)shes swimming in her outfit (she was 4 pounds 8 ounces and everything was too big) c) she had more/darker hair when she was born than now.
Lets find a more recent picture to compare that to.
here are a few: (OK After several attempts to line up descriptions I FAIL bring on a cat Macro!)

More Good News!

2008-07-12T17:00:00.000-07:00

I meant to post last night, but the computer I was using has "netnanny" and wouldn't me even sign in on it :\

Meghan climbed up in her crib today! more than once! and she walked holding Ed (father in law)'s fingers. She was pretty exhausted all day, other than those things. She also smiled. and giggled.
I went to youtube on my phone and got the Miffy videos up, and Yo! Gabba Gabba. We sang along and she grabbed my phone to watch. WITH her right hand. So, thats awesome. Now we just have to have her do this while the therapists are watching.

She is distrusting of pretty much everyone other than us (Me, Pat, Mary, Ed, and my mom). She buried her face into PopPop's shoulder last night when she saw a nurse come in...only to keep "peeking" and following her with her eyes to make sure she wasn't going to poke her hahaha. oh, and she likes ONE tech.

We still have a long battle, but these are all good signs.

Quick Post

2008-07-10T16:47:00.000-07:00

I'm headed back to the hospital...
We came home because Sean needed to sleep in his own bed for his nap. He was SUPER hyper today. On top of that, its been an odd day...more on that later.

Graduation Day! out of the ICU. That was a long 4 days. Seriously. Meghan is now in a "rehab" wing. We've met the rehab staff, and I like them a lot. The one OT said a Bumbo seat would be a great thing to have. I never had one, but I thought they stopped making them? Or they were recalled, not sure. I didn't realize they had existed for Sean, and I honestly think I'd forgotten with Meghan haha

Lets see, what else? Well, nothing. It was an odd day because my mom was a bit upset with the fact that Meghans leaving the ICU. Well, concerned is a better way to put it. Shes afraid she won't get the attention that she possibly needs...What she didn't understand is that Meghan has several "teams" of doctors that are working together to get whats best for her. Neurology/Neurosurgery, PICU, Hematology/Oncology, Rehab Team, Occupational, Speech therapy.

All in all, I feel comfortable with where she is. Its a bit later (midnight), and I've gotten over to the hospital to check out the unit. On the way to the hospital, I called Pat to get him to guide me to her new room. Too bad he was passed out on the couch there. He's really been absolutely wonderful through this. He has hardly left her bedside, and generally only will if another family member is there. Its like, we're doing things in shifts. haha I haven't gotten much time to be alone with her, since I really only get there during the day. But let me tell you, holding her yesterday was the best feeling I've ever had. Well, other than being able to hold either of the kids for the first time...probably on par with that. That was what I called a "milestone".
I also have my laptop now, but the wireless access everywhere is shotty. I think I want an aircard lol I don't think I could get used to schlepping the laptop with me everywhere though.

Tomorrow, I have to look forward to talking to all the rehab/therapy people, and I'm quite excited to start. When Pat gets a job, I am definitely going to stay at home for at least the first few months. As much as I love Kitchen Kapers, and the extra cash, I need to stay at home...Ironically, I got a job to get out of the house to keep me a bit sane, and now I'm taking a leave to do just the same thing. I feel like tomorrows the first day of school lol I have the pencils and notebook Erin gave me to take notes because I want to make sure I absorb everything I need to know.
Sean did OT, but it was more play, because that was the concept of the place (Theraplay, go figure :P)

ok sorry, just babbling now. I'll save more for later. Time for a snooze, I'm sure I'll have a long day tomorrow. Good night.

Getting There...

2008-07-09T15:03:00.000-07:00

I'm updating from the Ronald McDonald house right next door to the hospital. WONDERFUL place. We're staying here for the duration of Meghan's inpatient stay in the hospital.
They make lunches and dinners every day and are the most caring charity I have EVER dealt with.

On to Meghan.

Today was a good day! When I arrived this morning, everyone was abuzz about extubating (taking her breathing tube out). Boy, was I excited, because that meant two things a) she's making progress; can breathe on her own b) I can hold her! I was over the MOON! One of the things they do prior to extubating is sucking (for lack of a better term) all the gamuck (once again, for lack of a better term) out of her tubes. They put the balloon on, and what does Meg do? Rip it out. Just a testament to her fiesticity (yeah yeah, you should realize I make up words by now hahahaha)
So that process was relatively easy. I was afraid that it would be a labor intensive process and I didn't want to stick around to see it. BUT! It went well. She was a little cough-y, but that was to be expected. The vocal cords are a little raw after having a mechanism between them for 2 days. Then the Neurologist came. He is impressed by her progress, but still says it will be several weeks until she can come home. but!!! My favorite part of what he said? This kind of stroke would make her eye be stuck open, which its not. The right side of her face is a bit puffy, but she is on methylprednisolone (which is a sisterdrug of prednisone EVIL! but good in this case :P) which steroids=moonface. and shes been laying on her right side, so its normal for the IV to make her puffy.

Lets see, OH! Then the Occupational Therapist, Steph came. She is 32 weeks pregnant and adorable. So sweet. I talked to her a bit before she assessed Meghan. She was impressed by her strength also. We thought she would have a deficit on her right side because that was what was affected by the stroke, and thats also where she was first noted to have problems....but! it was only a BIT less tone than the left side. Boy, does she hate the whole being poked riggermarall. Shes totally my kid.

By this time, Arizona and Erin had showed up. They got Sean a few gifts (Spiderman book, matchbox cars, goldfish and yogos). Also, they took care of me by giving me some "pampering" gifts and things to take Pat and my mind off things. Lavendar bodywash and lotion, Puzzle books, Cards and a package of really nice mechanical pencils due to the lack of sharpeners :P
We brought them in to see her, and the Vicar showed up to see if we needed consolation. I'm like smiling and happy for the first time since Thursday, so that mayyy have looked a bit bad hahahaha but no, really todays the first time I've seen "progress", so it was heartwarming. She said a little prayer, then we wanted to hang out with Sean-face. There was a HUGE party going upstairs thrown for the DE State Police (for some reason that sounds odd to me. I'm just used to PA hahaha)
They had gifts, Sean got a pair of Cars PJs and a matchbox car, and we picked Meghan up a blanket that Sean said she needed. They also had shirt coloring, "syringe"painting (totally better than it sounds initially, though the concept seemed a little bit askew at first), pie throwing, beanbags, hop-scotch, etc. Also food! Was so nice to get away for a couple minutes. Sean and I made a shirt for himself and for Meghan. We had a really good time.

Also! I thought I should add: Meghan smiled for Pat. He said "Where's Meghan", and she LOVES that game. She smiled......I missed it. I told the nurses when I was holding her "I'm holding her. Now I just want her to smile, but I don't want to ask for too much". Also, when they'd ask me if I needed anything, I seriously cried and said "I have everything I could ask for. All I've wanted for these few days was to hold my baby. And this is it." I took a couple pictures while holding her, so I'll post those when I get a chance.

I also want to thank you for the outpouring of support from you all. Pat and I very much appreciate it, even though I can't get back to every single e-mail and phonecall.

Oh, one more thing. As this all sounds well and good, the doctors wanted to stress that she is NOT "out of the woods" I hate that. Seriously. Shivers down my spine. But, shes inching closer to there. In the ICU, they take things one day at a time. They cannot give me a long-term answer, which of course, is what I want. But by Monday next week, we should have a better understanding. Also, the neurologist is VERY interested as to why this has happened. He believes that there is a genetic predisposition toward clotting issues, and the SLIGHT dehydration (while in the hospital) she had suffered caused the narrowing of the veins/arteries. The clot is in a very abnormal spot. its in the Thalamus, and the.......something gaglion. My anatomy is SO shotty lol He said it may be months, if ever to find a reason. Which pretty much freaks me out. I want an answer, and I want it um, now. I want to prevent future episodes.

Ok, I lied, I have another thing to say. MOST of her tubes are out. She had a nasal cannula when I left, also a feeding tube, and a gastric juice suckingout tube. I believe that since I'd left, they took out everything but the breathing tube.
Oh, and I thought i got rid of my migraine, but it came back with a vengeance. :\

I want to leave this on a good note though. so! I'm looking forward to going back tonight when my mom gets here from work. Seans not allowed on the unit, so we have to have someone with him at all times...drop-in daycare here costs $50/day. I'm looking into finding a daycare for "in the mean-time". We're working with a social worker (Andrea. She is absolutely wonderful.), and she printed me out a list. Tomorrow! its footwork :P I tried to find a Goddard around here, but no such luck. But there is one Montessori school. I'd like that since that is what Sean is used to.

Thanks again!

not so great news

2008-07-07T21:49:00.000-07:00

And I'm writing this from this stupid blackberry I haven't 100% figured out...its my only net link.

You may have heard Meghan has been hospitalized since thursday. Well, after a weekend (btw word to the wise do NOT get sick on a holiday weekend) of ivs, blood tests, vomit, lethargy, and insomnia (sleep? What's that?) Monday finally comes.

I spent the night at home w Sean, but I wanted a nice and early start. I'd made arrangements to stay at the ronald mcdonald house just planning on one night. I then get a phone call, "Meghan isn't using her right arm and we're concerned...she needs a cat scan" So I hightailed it through a storm to get there.by the time I arrived, Meg had been back for 10 minutes. Nurse said the doc wanted to talk to me. I'd known she had bloodsugar issues overnight. I figured that's what he wanted to discuss.Couldn't have been wronger (partly because its not a real word haha) her ct was "abnormal" and In an abnormal spot,on the thalamus.soooo mri.problem w mri? Baby needs to be sedated. An abnormal ct is a direct to ICU, do not pass go, etc. Fun.

All the rest was a blur. I met 2 ICU docs and a Neurosurgeon (No, not McDreamy). They couldn't have been nicer. I was just upset since we've been here 4 days and no real answer. Gave them megs and family history. NeuroSurgery wanted to talk to me about tumors and abcesses. Meningitis was talked about. Rahrahrah they were talking about all that goes with sedation.risks and what not.
After that a socialworker came in. She's wonderful. I took my migraine med and wanted to take a shower and nap (med makes me sleepy) my mom came running in "the results are in", so I went to her room.
The doc came in said "I want to look her over first. Then we'll talk" within 2 mins 3 docs get chairs and.that action alone had me realize the news wasn't good"
I listened for a moment but after 5 seconds of their schpiel, I said "she had a stroke", which I thought they were going to tell me was preposturous...only it was true.

After that, I went into a state of shock. I think I'm still there.
I've had a couple hours sleep, and I'm at home gathering things to have at the Ronald McDonald house.

I am so lucky to have the people in my life that I do. Everyone has been super wonderful.

In other news: Meghan actually lifted her right arm today. This is the side where they told me she would have her deficit.
It is incredibly difficult to look at her and not break down into tears. I have a song for her that goes to the Miffy theme song: "Meghan, Sweet Little Meghan, Meghan, Mommy's little baby, Meghan, sweet little baby, Meghan THATS YOU!" then I touch her nose. She loves it.

Ok, I'm off. I just wanted to give an update.
I'll try to write about her progress every day for those I can't contact by phone.

edit: Also, Meghan is on 2 blood thinners and a blood pressure medication. They're starting her on an antiepileptic, just as a precaution.

In my Absence

2008-07-02T18:38:00.001-07:00

Things have been crazy around here.
My littlest one had her vaccinations a couple weeks ago...She ended up with a rash, which was supposed to be explained by the vaccine (it was the MMR), but it wasn't going away, and it was actually getting worse. SO! We took her to Nemours/duPont Emergency Room last tuesday.
She was also having some Anemia issues, and the ER doctor was more worried about that than the rash (which, we haven't really gotten an answer to other than "probably some kind of virus...not Coxsackie, not Measles, though it closely resembled Measles..don't get me started lol) so! Amidst all the craziness of switching our insurance, the Hematology/Oncology unit at duPont found us a little spot yesterday. We met with a WONDERFUL doctor (I feel bad, but at the moment, I cannot remember his name) he said her labs have been increasingly getting better in the passed 2 weeks, so thats good.

But (why is there always a but?), they weren't able to run the test that he was most interested in...Hemoglobin Apheresis (picture in your mind all the generic images you have of labs in your head where they take the vial and spin them at SUPER high speeds..thats what they do to separate the hemoglobins from the rest of the blood. so they can get a better look at how they're formed, their color, etc) Because! Ohai, Italians apparently have a special kind of Anemia called Thalassemia. Wonderful. So! We'll get those results sometime soon, I hope.
duPont really is wonderful. And I know I say that all the time, but really, the way they've taken care of Meghan just puts a smile on my face. I haven't come across anyone that I don't like there. And I'm a pretty tough judge on character when it comes to docs hahaha
Actually, her doc yesterday asked me if I was a PA (physicians assistant), because I seem to know what I'm talking about. I had told him that previous to having children, I was studying to become a Forensic Pathologist, but upon visiting the Mütter Museum's exhibit on Infectious Diseases, I concluded I did not have the stomach for it. I've been intrigued since the OJ Trial. When most girls were reading TeenBeat Magazine, I was busy reading studies conducted by Michael Baden.
Cue my fascination with shows like Cold Case and SVU. Seriously hahaha
Then after all that, I decided to change my major to just regular old Criminal Justice. ahh. the old days. But anyway, the doctor said that I seem to have a knack for the medical field and suggested looking into Nursing, which I was planning on pursuing when both the kids are in school.
We get to go back to the doctor July 30th for another round of tests and a visit with nice Doc.

Whats everyone up to for the 4th of July? I think we're going to check out what Phoenixville has to offer. I still kick myself in the butt for not moving there. I adore that area.

BTW, everyone has pretty pictures on their blog! as soon as I find my cord, I will post some :D

Clothdiapering Mommies!!!

2008-07-02T18:21:00.000-07:00

Win a Bum Genius 3.0 Starter Kit from Nature's Child - Wholesome Goods for Mothers and Babies

(From Jenn K)

You all know how I love the cloth diapers and BumGenius' are one of my favorites! So check it out! (I need to get back into CDing, its been awhile)

Todays Agenda:

2008-06-27T11:46:00.000-07:00

Get a new phone, add line for mom
Dishes
3 Loads of Laundry
Clean Kitchen
Clean floor in our bedroom
Wash Walls
Mail back defective sunglasses bought off Ebay
(Polish the sparkly new pair Pat bought for our anniversary)
Call Nicole; get directions to her moms house
Cook Dinner (Eggplant Parm)
Pack my moms bags for the shore
Get ready for the Car show tomorrow not going anymore. MAYBE later on in the afternoon
Collect pictures to print for 250 free prints on shutterfly (i have til the 30th ahhh)
~~Take Movies Back!!!! (I've forgotten these for...5 days now)~~ Hooray for no late fees :P
Get Paycheck
Grocery Shopping
Look for new Baseboards (that will probably be tomorrow)

Up Late...

2008-06-26T21:40:00.001-07:00

Patrick downloaded this pinball game on xbox, and I have to say...I'm a bit obsessed now.
I'm not TOO much of a gamer (not supposed to touch the xbox without Pats written permission :P), but I'll enjoy some games now and then. Actually, Pat "won" my heart when I beat him in DOA3 on playstation 2 (ok, I'm pretty sure he let me win, but still...)
So for now, I'll procrastinate cleaning the kitchen for a few minutes, write a blog entry and then take my turn. We share, trying to set a good example!!! hahaha

Other than that, Its been a pretty stressful week. Our new health insurance goes into effect next week, thankfully, Pats plan from his former employer is still effective, and they are actually overlapping. Thats a relief.

Now we have to find new doctors, because NONE of the ones we go to take our new plan. I'm thinking of taking the kids to a duPont pediatrician, just because thats the hospital we take them to, and its nice to have a doctor who actually has priveleges there. Makes it much easier for refferals, also. Nobody there had ever heard of their current one. As for the drive, I don't even mind. its PEACE of mind over inconvenience. Plus, its not that far, MUCH closer than CHoP. Plus, Paoli hospital (which is closer) doesn't even do Peds and ships kids out to either Lankenau or CHoP. As for liking CCH, its done me well, I just feel more comfortable with a hospital especially for kids.
(This is all completely relevant, just not airing it all over the blog :P)

Sean has been having a BLAST having Pat home more often. Meghan is just ecstatic!

My friend is coming down from Boston and may be staying with us for a couple days and I'm so freakin excited! I haven't seen her in a couple months. Her daughter, is only a day younger than Meghan. Meggys going to have a BFF! haha

Ok, thats enough for now. I have a long day tomorrow.

Thursday Thirteen

2008-06-26T14:00:00.000-07:00

 
Thirteen Things about Julie

My 13 favorite things about summer are:

1. Warm Weather
2. Driving around with the top down
3. Putting my feet in the wet sand
4. The way my hair feels from seawater
5. Good Neighbor Day
6. Tank Tops
7. Not having to wear a Coat
8. Kids get to play outside and they tire themselves out
9. Reruns- so I can get caught up one what I've missed
10. My teacher friends being able to meet up for lunch
11. My husbands obssession with the BBQ
12. Being able to sit and watch a sunset at 830
13. Perfect Corn on the Cob

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Chance to win an essential Babywearing Collection

2008-06-26T13:51:00.000-07:00

Win the Essential Babywearing Stash from Along for the Ride (one Beco Butterfly, one Hotsling baby pouch, one BabyHawk Mei Tai, one Zolowear Ring Sling, and one Gypsy Mama Wrap)

I love the Mei Tai and the Hot Sling!

First Post

2008-06-20T19:43:00.001-07:00

I'm going to write a little getting to know me post :)

I'm Julie. Mother to Sean (3) and Meghan (1). I've been married to my husband Patrick for 5 years and 5 days lol We haven't killed each other yet, so I guess we're doing something right.

Currently, I work part-time for a small (only tri-state) Kitchen supply store in the local mall. Its fun for now. I'm OC and have a insatiable taste for appliances and accessories (not so much fashion, though I enjoy the luxury of a Coach handbag and would love a pair of Louboutin Rolandos). Anyone at work will tell you that I'm constantly straightening things out, almost to an annoying degree. I grew up with/around clutter, and I CANNOT stand it.

Also, I have somewhat of an addiction to popculture and random, meaningless knowledge. Don't test me at Trivial (emphasis on trivial :P) Pursuit, or Scene It (as long as its not freakin Harry Potter or Star Wars/Trek or something). My husband and I are somewhat geeky, we enjoy watching movies, especially horror. We've been to Horror Conventions, and plan to attend another one in August where we will hopefully meet Robert Englund (Fred Krueger). This has been something I've been into since I was a child, especially since A Nightmare on Elm St was my first film in the theater.

Also, I've played guitar since 1993. Not as much since the kids...my prized guitar (of 6) is an Ovation Celebrity...it has a roundback, while pregnant, that didn't quite work so much hahaha but I'm already sure Sean either has a future in music or in engineering. Don't tell him he's getting a guitar for either his birthday, or christmas. I find instruments to be a big deal, I've played many over the years including: aforementioned guitar, Sax, Clarinet, Viola, Flute, Bass, and horribly failed at drums. I never had a set, it was looked down upon by my parents. too much "racket".

Other than that, I'm quite excited to blog and plan to discuss pretty much anything that comes to my head. I've always written in more of a stream of conciousness style. so some of it won't necessarily be 100% cohesive, but in the end, I usually come full circle and it should at least make sense.

:)