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August 22, 2002
Heellllooo long time
blowing the dust off my keyboard...it's been a while since I checked in. Sorry about that. But I have pictures of a pretty bunny to show you!
I had a get-together with some ladies who I met through a message board for people having a baby in October of 2001. Of course, now we all have babies, so we post at a message board for people...well, you get the picture. But these women are kind of family now, they know everything about me and Quinn, so it was wonderful to meet them in person. They flew in from all over the country to spend the weekend in Chicago.
This entry is making no sense. Perhaps because it's 12:20 a.m.?
Anyway. One of the nice ladies is an excellent photographer and took these pix of Quinn. Isn't she the prettiest of all bunnies? I love looking at them.
She goes for her second session with the therapist tomorrow. I should have taken her picture today as she played on the floor in just a diaper and her snappy spandex pants. She has been taking really short naps lately (I think because she's still working on those four teeth) so she was tired and out of it and she eventually tried to go to sleep leaning against her toy basket. It was quite a sight.
Posted by Amy at 1:16 AM | Comments (8)
August 16, 2002
Therapy: Day 1
We finally received some good news about Quinn today!
She had her first trip to physical therapy, which was recommended by her neurologist but not required. I'm so glad we decided to pursue it! The therapist, Kim, was WONDERFUL. She did an assessment on Quinn, and found her to be progressing along very well! Behind, yes, but she's on the right track.
She told us what we can certainly tell from watching her gymnastic feats: she has extremely flexible joints in her hips, legs, and ankles. Because she goes from the crawling position to a split to sitting down, she hasn't ever been able to move herself forward. (It's kind of hard to explain this in writing... you need to see her... the girl is Gumby) And in order to crawl, you have to be able to hold and lock yourself in the "four-point" position, which Quinn just can't do, flexible as she is.
Among other things to do with Quinn at home (exercise and positioning activities), she gave us a pair of purple spandex bike shorts that are modified for babies who hyperextend their legs--the legs of the shorts are sewn together! After we put Quinn in them, she not only looked like she just got off the "Saved By the Bell" set, she couldn't do her splits, so she had to sit with her legs straight out in front of her. And when she crawled backwards, she couldn't just spread her legs to go into a sitting position...she had to bend them and bring them around correctly. And boy was she PISSED OFF after a few minutes of this! But she was making progress...already! Yay!
As far as standing, Quinn has never been able to support her weight on her legs. She will stand up against the couch or our lap for about 2 seconds, then she'll sink to the ground. Kim put little one-pound weights on Quinn's ankles to help her develop an awareness of her ankle joints, and she propped her up against a chair... and Quinn STOOD THERE and played with a toy! Like a normal little baby!!! And when she wanted to sink down, Kim stuck her leg between Quinn's legs, so Quinn could perch on it, then stand back up when she was ready. It was AMAZING. Andy and I both almost cried!
But there's even more! Oh yes! More!
Kim also solved Quinn's breath-holding thing...at least, she started us on the road to a solution. Every time Quinn would hold her breath, Kim stroked her chest (starting up near her neck) downwards in a V-movement. While she did this, Kim said, "Ccchhoooo... cchhhooo... chhhooo." She was helping Quinn to relax the muscles that she was holding... Kim was, in effect, breathing for Quinn by pressing rhythmically on her chest. The point of the "choo"-ing was to get Quinn used to hearing that sound in conjunction with the activity, so eventually we can just say it to her and she'll relax on her own. And you know what? IT WORKED! Of course, every time we would halt Quinn from the breath-holding, she'd look annoyed and do it again...but maybe she'll slow down with it, and it will disappear altogether!
I mean, really. Could that hour with Kim have been any more helpful? Any more worth the $248 it cost? I don't think so... I really don't. Kim seems to think that she'll have Quinn crawling very quickly, and that her remaining tests at Children's will come back positively. She said that if Quinn weren't doing anything, or weren't progressing at all, she'd be worried, but she said Quinn is obviously doing pretty well if she can get herself in the crawling position, rotate, crawl backwards, sit up, etc. etc.
"So she doesn't have, say, Muscular Dystrophy, you don't think?" I choked out, trying not to cry.
"No... I think she's going to be fine!" she said as Quinn crawled by (backwards) in her purple spandex shorts.
Best. day. ever.
Posted by Amy at 12:23 PM | Comments (36)
August 13, 2002
Minor update
We still don't know much, but we do know that one blood test came back and her levels of CPK are normal. CPK is a byproduct of muscle deterioration, and it's an indicator of things like muscular dystrophy. The nurse said that the normal CPK level doesn't mean necessarily that she does NOT have MD, or other similar things like spinal muscular atrophy, but it's a good sign.
Also, we're going to go to Quinn's first physical therapy session on Thursday. They'll see how she's doing ("Hey, she doesn't stand or crawl") and then figure out what we do w/her from there.
Posted by Andy at 5:08 AM | Comments (6)
August 9, 2002
Halfway done!
On top of all this testing stuff, Quinn has been working on 4 teeth this week.
4! Teeth! In! One! Week!
She has not been herself at all--I feel so bad for her!
We got a phone call from the hospital today that gave us some revised instructions. Quinn was to stay up until midnight tonight, not 10 p.m. as first reported.
After dinner out, which we drew out for as long as we could without looking like squatters, I took Andy home to have a nap (because Quinn and I had a big one this afternoon) and then we went to see my mom (who was watching a very maudlin "Biography" on ... someone ... ), then over to my sister Julie's house. Julie and Denny had their friends Mary and John over, and between the five of us (plus Maureen) we entertained Quinn from about 8:00 to 10:00 p.m. She got a little crabby at about 9:30, so we plopped her in the bathtub, which she greatly enjoyed...for about 15 minutes.
The crabbiness continued the whole time I got her into her pajamas, so Maureen and I decided to take her to Meijer. That worked out pretty well...we walked up and down the aisles while Quinn ate Cheerios and threw her toys over the side of the cart. Maureen pooped out before Quinn did! We got back home at about 11:00, she had a bottle, and was asleep by 11:30. If I get crap tomorrow for putting her to bed a half-hour early, I'll ... do something defiant.
We have to be up in 4 hours.
Quinn is doing so well through all of this. I'm proud of my little bunny chops!
Posted by Amy at 12:45 PM | Comments (2)
Tales of hospitals
All the excitement and drama of today's trip to CMH is found in this entry of Amy's journal. It's just too big to put here.
Posted by Andy at 9:02 AM | Comments (9)
early. e a rl y.
4:00 in the morning is early. It's 4:30 and I haven't roused Quinn yet. Don't worry, staff of CMH...she'll be PLENTY sleep-deprived! I'll let Andy do the honors when he gets out of the shower.
I'm watching "Extra" and someone auditioning for the Extreme Makeover Challenge is wearing a t-shirt that I own. And used to like.
The man host (I don't remember his name but he's a suckup and has legs like a gazelle) just said, "That's all for tonight...goodnight everybody!" What time is where he is? Doesn't he know my day is just beginning?
I'm having some trouble recalling words.
Goodbye.
Posted by Amy at 5:31 AM | Comments (5)