Updates on Laurel: September 2002

Update on Laurel...

All of Laurel's therapists agree, since we started the NACD program she is seeing better (which I guess isn't even something in the list, I haven't talked about it a lot, but she has cortical vision impairment - the area of her brain that processes images is part of what was damaged) - making more eye contact and turning to look for the source of sounds. They also agree that she is using her arms better and keeping her hands open more. We kind of fell apart doing the program while we were all sick and during our vacation but are trying to get back to it now.

Laurel drank a little from a cup again Friday night, but then her speech therapist put fear into our hearts by saying that Laurel is at risk for aspiration and if we have her drink liquid without thickener we should take her temperature every hour the next day to make sure she's not coming down with pneumonia! So now we are waiting for the therapist to bring us some thickener (hopefully tomorrow, if she remembers). I think if Laurel can get up to drinking 2/3 of an ounce then we can take her for a swallow test and know for sure whether this is really a problem. We've got a ways to go, though, she is only taking very tiny sips so far!

I think that's the news for now - this could be a pretty news-filled month though! In addition to seeing the neurologist at the end of the month, she's seeing the endocrinologist tomorrow for another blood test to see if she can come off the hydrocortisone yet (she has had a cortisol deficiency which is getting slowly better with time, last February she was just below the normal range so we're hoping this may be it! We won't have the results for a few days though...) and later this month, an orthopedic specialist who will probably fit her with some AFOs (ankle-foot orthotics) to try to help her stand flat on her feet [note: I was wrong on this, the orthopedist wasn't till October].

I think Laurel knows what "we're done" means!

We've been trying hard to be consistent in our use of language with her, especially in more recent months as she has seemed like she was more attentive. For example, most of her program activities are timed, and when the timer goes off I stop the activity, turn off the timer and say "We're done!"

She was in a MOOD for a lot of the weekend, and last night she was particularly upset by getting dried and dressed and having her hair combed after her bath. By the time I finished combing her hair, she was howling. I held her and said various soothing things, to no particular effect. Then I said "We're done" and she practically stopped in mid-howl! Then she went back to fussing a little bit, but she was MUCH calmer.

So now I think Laurel DOES understand at least part of what we're saying! Even the slightly abstract stuff. I can't tell you how happy this makes me...

Also, Laurel was SUCH a brave girl this morning at the endocrinologist! They must have taken at least 10 minutes getting her blood. They stuck her 3 times and dug around a BUNCH. That happens to me, too (poor kid inherited her mother's rubber veins) and makes me queasy, and it was making me queasy watching them. But she just cried a little and *never* got hysterical - just held on to my finger and stared into my eyes (the second is something she couldn't really have done a couple of months ago). It's the first time we've EVER walked out of a bad blood draw like that with a calm little girl!

The endocrinologist was very complimentary of how she was doing, too, and sounded optimistic about her prospects for outgrowing the cortisol deficiency. Now we just have to wait for the results!

Well, we're a little disappointed...Laurel has to stay on hydrocortisone. It's not a *big* deal, as these things go. But we just have not been all that comfortable with her having to be on steroids long term, plus I guess for us it would have been another sign that she was getting better. But her blood level (I guess it's actually ACTH that they measure) is the same as in February. Her endocrinologist called, and said to keep her on the hydrocortisone at the same dose, and see him in six months. Same as last time.

Oh well, I am off to have my mole removed...

Got the results back from my mole biopsy - somewhat abnormal but not yet cancerous. And the margins were clear. :-)

We got back just a few hours ago from 24 hours of "respite care." Last spring our church had its services auction, and we bid on and won "24 hours of care for your special-needs child or parent." It was offered by a physical therapist with a lot of experience working with special-needs kids. So last Sunday they met and we talked to her about Laurel, and last night we bundled Miss Laurel and a huge pile of stuff up and took her over there. We must have spent close to an hour trying to pack that poor woman's head even further with every piece of Laurel-related knowledge we could (never mind the four pages of written instructions, LOL...Jen, in case you're wondering why she got two more than you did, it's because she wanted to try the feeding pump...). But eventually we gulped and left. We ate dinner right around the corner at a German restaurant, just in case she called! But all was quiet and so we went on ahead to stay the night at Big Meadows Lodge in Shenandoah National Park. We had a wonderful time listening to a singer at the bar there and then looking out at the lights in the Shenandoah Valley. This morning, though, the Blue Ridge was socked in with low clouds. We ate breakfast at the lodge and then, thinking that the clouds were from Tropical Storm Hanna moving north, we decided things might be better if we went north. HA! The farther north we went, the ickier it got, and we ended up taking a short hike in light rain (what are the chances that the first rainfall in a couple of weeks would fall today? As Bob says, maybe the farmers should pay us to schedule hikes...) and going to a cave instead. But we still had fun today, and we had a wonderful time last night.

The sitter ended up calling us this afternoon, though, because Laurel was running a slight fever. It came right down with Tylenol, but I'm worried we're looking at another ear infection. :-( She was sick last week, so it wouldn't be a big surprise. (I've been struggling with coming down with what she had...I had been afraid we'd have to cancel on my account, but I've been slugging back echinacea and zinc lozenges and so far mostly just have a sore throat. Of course, that's what happened to Bob for the first several days [he had it at the same time as Laurel] and he didn't bother with either one of those things.)

Anyway, that was the big part of our weekend! Tomorrow we don't have much planned, besides going to the big semi-annual kids' clothes consignment sale.

I just sent in my monthly report to NACD, and then I remembered a P.S. I thought you guys might like this too...

One more thing I should have added to Laurel's general update - she is smiling more! For the last few months we've been able to get her to smile if we bounced her, and now she is starting to smile sometimes even if we just talk to her or pick her up. We think she might have even tried to laugh tonight - Bob was playing with her with this "5 Plate Busy Box" we got from the early-intervention folks and when they honked the horn, she smiled and made a funny little sound...like he said, if there had been more than one of that sound, we'd have been sure...

So Laurel's first experience camping went pretty well!

We got home and found out that our cable modem was on the fritz and the dial-up to Bob's work isn't too reliable either! It won't be fixed until Thursday so I'm sure I'll be less productive at work than ever the next few days. ;-)

Well, we are starting Wilbarger brushing with Laurel this week - brushing her arms, legs and back every two hours (during the day) with a little plastic brush. We'll be doing it for 2-3 weeks. Laurel's OT had a big list of things she thought it would help Laurel with, but I'll just be happy if it helps her with her startling - I heard from a couple of other parents of kids who'd had infantile spasms that it did great things for them that way. Anyway, I need to go brush her now!