Updates on Laurel: November 2002 |
| More or less as posted on the November '00 Playgroup on ParentsPlace |
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November 14, 2002 (5:29 PM) In Laurel news... I heard a couple of neat things about her yesterday. I had Laurel's OT come to her Feldenkrais session and the two therapists were talking and agreed that "Laurel is right there perceptively," meaning, she understands a lot of what's going on and what's said to her. And her ped said yesterday (she had her 2-year checkup) that "Laurel really turned a corner this summer." BTW, she was 24 lbs and 33.5". I thought the ped might be concerned that Laurel hasn't gained any weight in the last few months, but she didn't seem to be, I guess because overall her weight gain has been pretty good. We had a long discussion about taking Laurel off seizure meds and decided to get another EEG (she hasn't had one for a long time). We also talked about taking her off the formula she's on - the folks at the children's rehab center had wanted her to change to another (even more expensive) formula when she turned two - but the ped didn't seem to think that was an issue. And we also talked about allergies, the ped agreed that she probably has some but because antihistamines lower the seizure threshold she doesn't want her to have any. So we're supposed to control it environmentally by washing her bedsheets in hot water every week, cleaning up any mildew, etc.She has been doing well with the Feldenkrais so far. Her arms really loosened up at the shoulders in the first couple of weeks! The therapist has had her reaching way off to the side (not something she normally does) and I've seen her doing that on her own now too. On the frustrating side, prone conditioning (getting Laurel to deal with being placed on her tummy) had been going really well (she'd even crawled forward about half a foot with her arms once) but last week there were a couple of days in a row where we didn't have many sessions of it and she totally fell apart on it. We had her up to 2 minutes (from 5 seconds!), now I can't even get her to do 1 minute. I wrote the folks at NACD to see what we should do. And the poor kid has had that viral ulcer on her tongue now for I think at least a month! We thought it was finally just about healed and then she bit it again yesterday. I've got one now too so I really feel for her! OK, I think that about covers it!
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November 14, 2002 (11:58 PM) I feel so bizarrely normal right now...I just snuck in a replacement for a broken toy. Laurel has this stuffed moon that hangs off the crib where you pull the cord and it plays music and red lights flash in it. Or did flash. It's one of her absolute most favorite things and last week the lights stopped working. So I looked all around town, couldn't find another one, and finally found one online in Wisconsin. It came today and when Bob played it to make sure it worked, her head just snapped right around. She's been wanting us to play it so much but I didn't want her to find out it was broken! Last night she grabbed the handle and tried so hard to pull it herself but she still just can't quite get that motion. I was so torn on whether or not to play it because I know part of what she really likes about it is watching the lights and I didn't want her to be disappointed. So I didn't. Anyway, I just played the old switcheroo and put the new one in her crib. And now I almost feel like crying because I wasn't sure I'd ever get to do anything this normal. Does that make any sense? Thanks for letting me share...
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November 15, 2002 (2:38 AM)
More ramblings from a sleep-deprived mother... You know, Laurel has been hung at about 5 months development in motor skills for a LONG time...and for a long time it wasn't clear that she was any further than that cognitively, maybe not even that far. But lately it's been clear that wheels are turning in that little head (even though it IS still a very little head, she is way below the normal curve and has been since very early on). I'm not going to claim that she's at a 2-year-old level cognitively yet, but it's also clear that she understands a lot more than your average 5-month-old and more all the time. I have really been undergoing a change in my thinking lately from thinking of her as sort of a permanent baby to thinking of her as a little girl with disabilities. She is certainly taking the best shot she can at the 2-year-old attitude with the resources available to her. ;-) Even the fact that she still has the infant startle reflex...I joined a list for "Alternatives for Brain Injury" a month ago and was really fascinated to find out that an adult woman with CP who posts to the list STILL startles! And she is going to college. So clearly not losing that startle reflex is not necessarily a measure of what one may achieve in life. :-) I think it's probably still too soon to celebrate, but I've been so close to crying with relief lately. I know I haven't dealt with this with a lot of grace, I've been horribly whiny and bitchy at times, and although I'm sorry I also can't guarantee that I'm all done yet ;-) - I'm still sick to death of all the pain she's in (gas, teeth [she was in pain for almost a month solid over one molar, and she's still only got 7.5 teeth], mouth ulcer) and living our lives around tube feedings and having so many of our attempts to go out with her turn into disasters one way or another and all the just plain hard work. But the weight I was carrying over her lack of responsiveness to the world around her was huge, I didn't really appreciate how huge until now when it's just starting to lift. I'm wishing I could stop and process and celebrate but I'm too damned tired and there's too much work to do. :-PAnd now, after going in there and playing her moon for her several times, I think Laurel is finally falling asleep...I hope...if nothing else I'm suspecting she's picking up that I'm still up so maybe I shouldn't be. ;-) Thanks again for letting me ramble!
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November 18, 2002
Laurel got her AFOs (ankle-foot orthotics) this morning...it was NOT a good time. First off, she hadn't gotten her morning nap and was tired and cranky (she's popped a tooth since yesterday, too) and cried so hard at the final fitting that she threw up. :-( She was so exhausted that by the time we'd gotten her cleaned up and changed and they came back with the AFOs, she was mostly asleep.Then, although her appointment sheet clearly indicated that we were to meet with the doctor immediately following the fitting, they had no record of that at the clinic. So there we were with these AFOs and no clue about how many hours a day she was supposed to wear them or anything. We had to sit and wait forever while somebody rounded a nurse up to explain things to us. Then, as we were putting Laurel in the car, Bob sprung it on me that Laurel's PT is getting her a stander (the PT comes on Thursdays, Bob's day home with Laurel, so I don't get to see her much). This despite the fact that neither the folks at NACD, the orthopedist nor I think it's a good idea. Apparently the fact that I'm against it makes me against traditional medicine (never mind that the orthopedist didn't think she was ready for one yet, either). Yes, it was an ugly fight and ended with Bob slamming the door and stalking away. Sorry, I try not to post too much about our internal struggles but darn it, it IS a major part of the reason I'm having a crappy day. I'm not looking for anyone to take sides, honestly, just wanted to say why I'm upset. It can only go uphill from here, right?
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November 23, 2002
Laurel is learning to turn pages - although she's doing it backwards! I had gotten out Laurel's "Touch and Feel Ponies" book and turned to the first page and she kept closing it. So I started from the back and she turned every page and touched most of the "touch and feel" things, without any help from me. Even though she's doing it backwards I'm really pretty darn proud of her!
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November 25, 2002
LAUREL HAD HER FIRST REAL LAUGH TODAY. And I missed it!!!!! I was at the gym. I didn't even WANT to be at the gym, I don't feel that good, but I had to go tonight in order to get the discount for going 8x/month (being sick would only count as an excuse if I'd been home sick from work, and I haven't been). Bob told me that he was doing program with her (face-to-face alphabet...we say a, ah, apple, b, buh, ball, etc. & try to get her to watch us) and it was clear she really wanted to stand (this is of course with support). So Bob gave in and let her stand, and she laughed, really laughed, not just the little "heh" we got a couple of months ago but a really big happy laugh. She's been laughing in her sleep for over a year but never before when awake. As much as I want her to reach lots of other milestones, I've been dying for this one. I cried when Bob told me. "You're supposed to happy," he said. "Don't worry, I am..." Although I can't believe I missed it!! Of course, she hasn't done it again yet. But now I think she will...
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