Updates on Laurel: December 2002

I thought maybe it was time for a general Laurel update (I have ulterior motives here as well - now I can also send this to the folks I'm sending Christmas cards to. ;-) But it's been a couple of months, sooo...

Well, first off, Laurel *hasn't* laughed again since that time three weeks ago. This doesn't surprise me, really - Laurel's typical pattern on milestones has always been to do it and then not do it again for months. On the other hand, I can't think of anything she's done and then never done again, so I still think this means laughing is coming - it just may be awhile.

We feel like she's frustratingly close to doing things on a number of fronts. For one thing, she seems *this* close to army crawling. She moves her arms more than she used to when put in prone position - several times now when we've put her in prone position she's pulled herself forward several inches. We are up to eight minutes on the prone conditioning. We were stuck at two minutes for some time and then finally broke down and tried the suggestion of our support person at NACD to distract her with a toy. In the past this would have never worked, but darned if it doesn't now. We need to change toys frequently, though. Her increased interest in toys has made Christmas shopping for her a lot more fun this year - I've had a hard time stopping myself! She still can't use her hands or arms a whole lot, but can push buttons - and since the latest thing in baby/toddler toys seems to be electronic toys with buttons, there are at least some choices (one of the things I got her is actually one of the trendiest things out there, "Chicken Dance Elmo." It's brightly-colored, it's furry, it sings and dances, and it's pretty easy to set off - what more could she want? ;-). She *has* learned to interlace her fingers, which is cool to see, and when she's tired she can bring her hands to her mouth, but she doesn't seem to be able to do that when she's wide awake. We haven't seen a repeat of the page-turning incident, although she hasn't seemed very interested in books lately in any case.

Her posture is also improving and she is getting closer to sitting/standing straight. The other night she stood straight up for about 20 seconds! She still needs a lot of support for balance purposes, though. I've heard that hippotherapy can be helpful for that (and also for back strength) and I think we're going to see about signing her up for that after the holidays. Her PT is also supposed to bring something that she thinks may help with engaging Laurel's back muscles and back strength. She has decided not to bring a stander (a device that would hold Laurel in a standing position) for now, because she feels Laurel is being introduced to enough new things lately. We (especially I) have not been as good as we should be about building up her time on the AFOs (ankle-foot orthotics). She will do OK with them for a while (up to an hour and half or so) once they're on, but putting them on often upsets her. We are still doing the Feldenkrais but haven't been able to have too many sessions lately - it always seems like they get canceled for one reason or another. She had one Friday, though, which went well and she especially enjoyed the time she spent on her hands and knees. Her Feldenkrais therapist has commented several times now about how much better Laurel does if things are explained to her first. :-)

On the feeding front, we haven't been doing much because she's had this horrible sore on the end of her tongue (for a couple of months now - every time it seems like it's about to heal, she bites it again!) and I was afraid of causing her pain and having her associate it with feeding. But, getting tired of waiting and waiting, I finally tried her with some and she didn't seem too upset by it, so we're back at it. She's eaten chicken several times now - not a lot, a heaping teaspoon or so (pureed or squashed up), but that's been enough to make her throw up in the past with things she didn't tolerate well, and it's staying down OK. Although I think it may cause her to have more gas (which is still a problem she really struggles with. Having run out of mainstream or even semi-mainstream ideas [gripe water helped some], I consulted with a biochemist and am waiting for some minerals to get here. Although I think the problem will probably only really go away when she's more mobile and eating a more normal diet.) Still, her keeping the chicken down leaves me hopeful that we will find some protein sources she'll tolerate and we'll be able to get her off that stinking expensive amino acid formula. I've been talking with another mom (in fact, we met them over Thanksgiving weekend - great folks :-) who also has a brain-injured, tube-fed kid, and she just feeds him pureed regular food, and I'm seriously considering trying that once we have gotten some tolerable protein sources identified. It's a lot less expensive, and this boy gets fed less often a day than Laurel does, his feedings go faster, and he no longer throws up (which he used to do every day). Although, I think in the coming year we will probably really push to try to get Laurel off the g-tube anyway. She does so much better than she used to with moving the food to the back of her mouth and swallowing, although there are still a lot of issues with interest and hypersensitivity. Her speech therapist is gung-ho to work with Laurel on feeding (her OT, who was supposed to be doing this, seems to have kind of lost interest) and brought a whole bunch of different things for Laurel to try the other day. She liked the hummus! Although then she threw some up yesterday. On the other hand, she's got a cold, and she throws up more when she has a cold. But both the hummus and the mashed-up chicken Vienna sausages we tried are a lot stiffer than what she's eaten in the past, and she's doing pretty well with them. Although she'll never eat more than a few bites of anything.

Speech-wise, she still doesn't say any words, although she has several sounds that she makes consistently that I think may mean something to her. We have been working with her with communication switches, a single switch and a double switch (I like the double switch because I like to offer her choices :-). It's not totally clear whether or not she gets the concept - sometimes she'll push a button right away when you ask her to and sometimes it'll take quite a while and even then it seems like it might be random. On the other hand, her motor planning problems are severe enough that a lot of things are like that for her - sometimes she's "on" and sometimes, not so much. I guess the best indication I've seen that she understands it was a few weeks ago at the end of a speech therapy session. Laurel was tired and it was clear, as far as Laurel was concerned, the session was over. But the therapist wanted her to do one more thing - push the button which at that point was set to say "I want to read a book." (The way these switches work, you can record a brief message on them and then they play back when the buttons are pushed.) Well, first the therapist tried to just persuade Laurel to push the button. Nothing doing. Then she changed the message to "We're GOING to read a book" and started actively moving Laurel toward the button. Laurel was just as convinced she wasn't going to push that button. It turned into a regular wrestling match and I couldn't help it, I burst out laughing. The speech therapist said, "That's the last time I ask her a question when I just want her to do something!" The therapist wants us to start working on the alphabet more as well and has lent us an alphabet video for her. :-)

Laurel still only has 8 1/2 teeth! And we're worried about some of the one she does have - in particular, her molars have been developing yellow spots. We have an appointment with a dentist for her in mid-January.

Her cortical vision impairment has definitely improved since we started NACD, although she has a long way to go. She makes better eye contact, looks fairly consistently for the source of sounds, can pick us out of a crowded room when we talk to her, and will often look at something when we tell her to (like the button pushing, this is variable though). However, she still often just looks at things with her peripheral vision. I think one thing about Laurel that's been fakey in terms of figuring out how attentive she is is that she doesn't seem to look at things that seem like they ought to attract her attention, when in fact she is looking at them out of the corner of her eye. I am coming to recognize a characteristic angle to her head when she's doing that.

It has now been 10 months since Laurel's last seizure! I'm not feeling totally triumphant, though, because I've read several scary stories on the infantile spasms list lately about kids who were seizure-free and making great progress and then, about a year and a half after their last seizure, the seizures came back, wiping away much of the progress made and being much more difficult to control. (I'm kind of wishing I'd unsubscribed to that list before this thread came up - I knew this possibility was out there, but reading peoples' stories has been depressing.) It does make one more reluctant to take her off her seizure medication, although at the same time being on medication doesn't seem to have made any difference to the kids whose seizures returned. Mostly I've been trying not to think too much about this...

OK, that was kind of a downer ending. But we are trying not to worry about the spectres of the future and live in the present - which has mostly been pretty good, in the global sense, even while still being frustrating in the why-won't-this-girl-sit-in-her-chair/highchair/stroller/anything-without-screaming sense. (And on a personal, non-Laurel note, I'm frustrated and worried about the numbness and tingling in my hand/arm, which now two chiropractors and a doctor haven't been able to help. Laurel's PT thinks it may be some syndrome that's a precursor to carpal tunnel syndrome.) Nevertheless, we are enjoying this holiday season much more than the last two!

More evidence that Laurel understands a lot...

Then last night she was pitching a fit at the start of her last feeding before bedtime (she's been doing this a lot lately, we're not sure if it's that she doesn't want to go to bed or what). I put on a CD for her and she just cried harder. Then I asked her "Do you want some different music?" and picked up the remote (my dad's old stereo is in her room - it has a 3-CD changer) and she shut up instantly - before I'd even started another CD. (That actually lasted a few songs, then she decided she didn't like that one either...)

Just wanted to share!

I'm kind of scared to believe it, myself, but Laurel's speech therapist said that she thinks that Laurel is "cognitively close to normal." Although her motor planning problems are pretty severe, meaning, that where another kid would just instinctively reach out their arm to grab something, for example, Laurel doesn't even know where to begin with it. But when she does figure out how to start she is pretty good at following through.

You know, I am still so scared to be too happy, for fear of it all being taken away from us again if her seizures come back. But Bob and I both almost cried when we heard those words...

Well, we have been having quite the holiday season so far...I realize it's not as bad as some, but still - UGH. Bob and Laurel got sick right before we left home (which was the Saturday before Christmas) and they're STILL sick. The earliest Laurel's gone to sleep in the last week and a half has been 1:30 AM and most nights it's been between 2 and 3 (I do her last feeding, so I'm the one who's been staying up with her - although she's also been waking up in the night and Bob's been getting up with her then). Meanwhile, we were staying with my ILs, as were my BIL and his family, and Laurel's 5-year-old twin cousins were off and running (literally) every morning about 6 AM. We were sleeping in the basement, so it was THUD THUD THUD THUD THUD THUD THUD THUD THUD THUD THUD THUD THUD THUD. I started to try to say something to their mom once or twice about keeping the kids from running early in the morning but as soon as I'd start her response was that Laurel was keeping them up at night crying. I felt like she thought it was just what we deserved for not keeping our sick kid from crying. By Sunday morning I felt like hell and have to admit I snapped at one of the twins when he wanted to know why I wouldn't play with him at 6:30 AM. Turned out later in the day that it wasn't just sleeplessness that was making me feel crappy, it was the stomach flu. Sunday was the day we left MN for Pittsburgh, so I got to use an airsickness bag for the first time in my life. :-( I'm starting to feel better, but now I'm breaking out in HIVES??? I've never done THAT before.

Not to say that our holidays have been nothing but awful - although I think the highlight was when we got away from everyone else for 24 hours while my MIL watched Laurel and we went to a hotel and the Mall of America! I did enjoy seeing my ILs, but I'm kind of grateful to be at my mom's in Pittsburgh now, where at least it's a lot more quiet. We don't have much planned here at all - I think we're going to celebrate Christmas here tomorrow and get together again with that other family with a brain-injured child again (that we met Thanksgiving weekend) on Thursday or Friday. Then home on Saturday. I'm looking forward to that more than usual...