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.
Tuesday, June 30, 2009
Tuesday, June 23, 2009
I don't have a title.
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.
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.
Sunday, June 14, 2009
Quick
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.
Saturday, May 30, 2009
Pool Time!
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)
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)
Thursday, May 28, 2009
Random Update
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.
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
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.
That will hopefully get us into Rheumatology
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.
Wednesday, May 27, 2009
goosfraba....
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.
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.
Friday, May 22, 2009
crazy week
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!
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!
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