Well, I had my big excitement for the day. For about 15 minutes there I seriously thought I'd lost my driver's license and credit cards. I'd remembered putting them in my coat pocket before setting off for Laurel's neuro appt, and when we went back to the room, I realized they were missing. I excused myself and looked around the waiting room and the weighing area and didn't see anything and figured, oh well, they probably dropped out in the car. Got to the car, nothing there either. I thought, well, maybe I didn't actually take them. But I got back to my office and they weren't there either. Ack. Panic time. I retraced my steps through the office, out the back door, down the sidewalk, up into the drugstore where I'd gotten my parking ticket validated. Did anyone turn any credit cards in? Nope. Back across the street the way I'd gone to the garage before, up the stairs. Decided to look in the car one more time before checking around where it'd been parked earlier. And there they were, behind the passenger's seat. (?)
Anyway, the neuro appt went fine, Laurel was in the best mood she's been in in a week and the best mood that the neuro's assistant (we almost never see the actual neuro anymore, which is honestly OK with us) had ever seen her in. She was complimentary of how Laurel was sitting and how good her head control was. She offered us some rectal Valium in case Laurel has another seizure episode like the one she had at my mom's, but we decided to take a pass for now.
And it looks like the flu epidemic at our house is finally tailing
off, but not before Laurel got dragged back to the ped yesterday because
her chest was all crackly and she was having trouble catching her
breath. When we got there we discovered she was running a fever, too.
The doc couldn't find anything obviously wrong but gave us some
antibiotics anyway (she tends to feel that you can't be too careful with
Laurel), although she said that she'd be surprised if they made much
difference and to let her know if Laurel suddenly got a lot better.
Well, the difference between yesterday and today is like night and day,
so I guess I owe her an e-mail. Meanwhile, the antiviral I got Friday
did wonders for me, and even the babysitter managed to crawl back from
the dead today. So working back to a normal life again...as soon as I
recover from my near heart attack! 
We had a pretty good meeting at Laurel's school yesterday. We were supposed to have a meeting last week, but we postponed it to this week because of our little flu epidemic. Anyway, they (the people at the meeting besides us were her teacher, her vision therapist and her OT) are mostly very pleased with how she's doing. They say it's just amazing how much better she's doing in adapted physical education than last year. Last year she just mostly cried, this year she is really interested in participating. It sounds like she's a lot more interested in circle time, too, and able to pay much more attention to it visually than she used to be. And they just raved about how well she's doing with the head switch running the computer. She can run it with the switch on either side (which is great because eventually they'll move her to two switches) and totally gets when to push it and when not to. And gets very frustrated with the demo version they've got because it only runs so many times before it stops. The OT said she will sit there and bang her head against the switch in frustration until they get it going again. Fortunately they have the "real" version on order (adaptive software is ridiculously expensive). The software they're using now is just cause-and-effect, but they plan to eventually move her to what they call "scanning" software which means that she can use one switch to scan through pictures and another switch to stop the scanning to signify that that's what she wants. Now that I've seen their switch adapter, I'll go ahead and order one for home (one switch adapter and one software package will take care of the $250 Mom gave us for Laurel for Christmas).
The down side is that she has been falling asleep a lot in class, which doesn't surprise us much because she's been sleeping terribly for months. It's especially been a problem for her oral snack, because that's about when they're trying to do it. During that window of time after we got the house cleaned with the new vacuum, filter, etc. and before she got the flu we actually got a few nights of pretty good sleep and a couple of days where she was able to eat the whole snack at school. The teacher said that when she's awake Laurel does a great job of looking at her to let her know that she's ready for another bite. Right now we're struggling with sleep again because of intestinal pain from the antibiotics she got Monday (yes, we're giving her acidolphilus, but we didn't get it started right away). I will be so glad when we finally get a decent-length period where she feels good!
Next Friday at 1:00 she'll have the Botox injections. I'm glad it's finally going to happen but nervous because I've heard it's very painful. I'll let you know how it goes...
The Botox wasn't as bad as we feared...hardly fun, but we've been
through a number of things with her that were worse. She cried the whole
time they were injecting her (and some before - she hates having her
legs messed with, anyway) but once it was over, she calmed pretty fast,
always a good sign that it wasn't TOO awful. We were worried when they
told us that it would take 1.5 - 2 hours that a lot of that was going to
be the procedure, but it turned out 1) it only took an hour and 2)
apparently it takes a long time to prepare the Botox. The injections
themselves only took a few minutes.
But the worst may be yet to come. We've gone from "We'll do Botox
and then see if she needs serial casting to stretch her out" to
"Now that we've done the Botox, she'll be getting short casts next
week and over-the-knee casts on March 4th." She is just going to
hate that, especially the over-the-knee casts. I have to take her in for
a PT eval next Wednesday and if it looks like she's ready, she'll get
the casts on Friday. I'm going to have to do the PT eval without Bob,
who'll be on his bi-weekly day trip to West Virginia, but he suggested
that I bring Laurel's babysitter for support which I think is a good
idea. Like I said, Laurel doesn't like having her legs messed with and
an hour of range-of-motion testing etc. is likely to result in a very
unhappy girl. I hate all the things we have to do to her - Bob made a
joke while we were there today about it being a medieval torture chamber
and that's something I've thought a number of times before, not
particularly as a joke though. 
Well, I'm going to run off and see if I can get my butt into the hot
tub at the gym for a few minutes before they close at 8 - I've been
having some awful cramps today...
UGH. Feeling the need for a mother vent...
Mom was supposed to go to the doctor on Wednesday for the follow-up
to the appt I took her to while we were in Pittsburgh. I've called her
twice in the last week to bug her about it. I talked to her about the
blood test results, which I had had the doctor send me (her
"bad" cholesterol was really high, 186 [normal is <100])
and discovered that she had not remembered that the new blood pressure
medicine was in addition to the old medicine, and she was only
taking the new medicine. She wouldn't believe me about the medicine and
kind of blew off the cholesterol result, but I pushed just as hard as I
could for her to keep her appt and at least get the medicine
straightened out. My sister called her over the weekend, too. But of
course, gee what a surprise, she didn't feel good and didn't go to the
doctor. Which caused an outburst from me - "Mom, you NEVER feel
good!" (and gee, I wonder why? 
) - which she ignored. She swears she'll go sooner or later, but I don't
believe her for an instant. She'll go like she went for the mammography
follow-up and the x-rays for the carcinoma on her nose.
Sitting here, I'm thinking I should really call her back and ask her how
she'd feel about hiring someone, like Lauren suggested. She told me last
night that her neighbor is making plans to move (even though she doesn't
know if her DH has gotten the job yet!) but that would remove the last
person who ever does errands for her or drives her anywhere (not that
she has been all that reliable). If Mom had someone who showed up ready
to take her (AND prepared to argue with her, though, I sure had to to
get her to go when I was there) she might actually go...guess that's the
only constructive thing I can think of for now.
Last night's restaurant debacle...
Yesterday I was in a horrible mood, late onset of PMS maybe. I was
cranky and depressed about everything. I went out and got my hair cut
and colored and did some shopping and snapped at some woman at the card
store who was blocking the entire "husband" valentine section
with her bags. When I got home, it was time to think about dinner. Bob
suggested going out to dinner and that sounded good. If I'd thought hard
about it, I'd've realized that maybe it wasn't such a great idea - often
Laurel gets upset when we get to a restaurant and then I have to calm
both her and Bob down. But not thinking about that, on the surface it
sounded good. So we went to Red Robin and had to wait for a seat. While
we were waiting, Laurel started to get upset but I managed to calm her
down and she was fine when we went back to the table. But started crying
after we ordered. Bob started in with his usual "We're going to
have to go," I started in with my usual, "Laurel, it's really
important to Mommy and Daddy that you be a good girl and be calm while
we eat at this restaurant." This usually actually works, but not
last night - she just kept crying louder. Bob wasn't even done with his
dinner when he decided to take her out to the car. As soon as he put her
coat on, she calmed down, so he finished his dinner and she was off and
running again. Meanwhile, I'd just barely started mine, because I'd
ordered a BBQ burger with extra BBQ sauce on the side and instead got
one without any sauce anywhere. The guy who'd brought it out cut and run
before I had a chance to say anything and it took forever to flag the
waitress down, and even longer for her to show up with it. The sauce was
cold and by that time, so was the burger. So I was just starting my cold
burger when Bob asked if I had a way to pay for dinner because he and
Laurel were going out to the car. I told him I had my credit cards, go
ahead. Well, the bill came and I realized that I had moved my cards from
my jeans pocket to my coat pocket, and I had followed Bob's lead and
left the coat out in the car...the bill was $19.48 and I had $17. So I
ended up having to throw myself on the mercy of the waitress to trust me
to run out to the car. She did...and wound up with a lot better tip than
she was going to get up to that point.
Meanwhile, Bob said Laurel hadn't let out a peep since they'd left. We
both told her we were angry with her, that Mommy and Daddy didn't get to
go out to restaurants that often and that it was important for her to be
a good girl when we did. We told her she was going into time-out when we
got home. (Time-out for Laurel is sitting in her high chair with no
videos [we have a little TV with a VCR for her] and no toys on her
tray.) She only let out a couple of small squawks after we put her in
the chair (usually she'd holler if we forgot to put a video on or if one
ended) and then the next thing we knew she was kicking furiously. My
thinking is that she was doing it because we always encourage her when
she does it and tell her it's a good thing to do and that she's cute
when she does it. I think she was trying to get us to not be mad at her!
Anyway, we were standing out in the hallway watching the little leggies
go and trying not to laugh, because that would have spoiled the effect. 
Unfortunately I had a stomach ache a lot of the rest of the evening from
trying to wolf down my cold burger, so that didn't help my mood so much.
Hoping today goes better!
Laurel has slept through the night three nights in a row! We are so
excited. I think the last time this happened was sometime last summer.
Bob's theory is that maybe she was having cramps in her legs that the
Botox is helping. I wouldn't have expected it to help quite so soon
(they are only now starting to loosen up) but whatever the reason, I'm
sure not going to argue with regular sleep and just crossing everything
that the trend continues! 
Argh...
Well, today's eval for the results of the Botox didn't go particularly well. Laurel was actually pretty patient while the two PTs evaluated her right leg but threw a total fit about the left one and got really stiff (we had an awful time calming her down afterwards, too, a lot worse than when she got the Botox) so I'm not sure how good the measurements they got even were. Nevertheless, I'm still inclined to agree with them that she won't be ready for casting on Friday - Bob's and my impression was that she was starting to improve but still had a long way to go. SO...now they are trying to figure out where they can fit her in next week. Oh, and meanwhile, the appt that we were supposed to have to remove the first set of casts on March 4th got moved up to March 2nd, because the doc is going out of town the afternoon of March 2nd. I asked if moving the casting meant that the doctor's appt would be moved too, and I was told no, we had to accommodate the doctor's schedule. So she won't have the casts on for two weeks as we were originally told, it'll be more like one. I assume. I don't know when it will be yet, they were supposed to call this afternoon and didn't. I said, "But wasn't she supposed to have them on for two?" and one of the PTs said,
"The doctor said we could be flexible about one week or two." Seems
to me if one week were plenty we wouldn't have been talking about two -
why put the kid through an extra week of torture? They also said that the best stretch would really be two full weeks after the Botox, but again, we have to accommodate the doctor's schedule, so they said they would work with whatever they had by whenever they could schedule her. Wouldn't it have been nice if we could have thought of all of this BEFORE she got the Botox??? I'm really getting worried that she is going to get shortchanged. Also, the PTs were really worried about the high degree of sensitivity of her feet and whether she would even tolerate the casts. We basically are to work frantically for the next few days trying to get her as comfortable as possible with having her feet be touched. But as I said to the
PTs, "We've been working on this problem for four years, we're not going to overcome it in the next few days." Still, if we'd had more warning that we should, we could have done a brushing program with her to see if we could at least temporarily damp down her sensory issue with her feet (it helped for a while before). But that takes several weeks. I'm feeling like nobody thought anything through here and it'll be a bloody miracle if everything works out OK...
I decided to send an e-mail to the head PT...I'm too bothered by this to let it go with whatever works with their schedule. Here's what I said:
Hi, I've been thinking since our appt yesterday with you, and I am really disturbed about the whole rush on Laurel's treatment. I'm concerned that the imperative to accommodate Dr. A---'s schedule is shortchanging her both in terms of waiting until the Botox has had maximum effect and in terms of how long she will be wearing the casts. We met with Dr. R--- for a second opinion on Botox/casting before scheduling the Botox, and he had indicated that there would be 3-4 months after the Botox in which casting would be possible. Which leads me to wonder whether either 1) we couldn't wait on the casting until the timing could work out better or 2) we could schedule with Dr. R--- instead. This just seems like a lot to be putting her through unless we are going to get the maximum benefit.
Thanks,
Rochelle Garwood
For whatever that's worth...I figure I'll give it until tomorrow morning to hear from them and then start making phone calls.
Well, PHEW. The PT just called. He got my e-mail, and he talked to the doctor and reviewed Laurel's case with him. The doctor wound up agreeing that there is in fact no need to rush on the casting. He will just look at her at the appt on March 2 and decide what the plan is from there. I haven't managed to get hold of Bob yet (he's taken Laurel to her weekly massage - we take turns doing that), but *I'm* feeling tremendously relieved. Although still annoyed that we had to go through all that...
Oh, one more Laurel-related thing...she's been asked to be a flower girl in a wedding! A friend of mine from the Nov. '00 board is getting married in July. Second marriage for her so not a big fancy deal, but her son is going to be the ring bearer and she thought there should be another kid in the wedding. She's hosted a couple of get-togethers for that board that we've gone to (she lives about 4.5 hours away), so she's met us and knows what she's getting. And her fiance is a quadriplegic, so her son is comfortable with wheelchairs. Now if we can only get Laurel to be comfortable with it! Like Bob says, this gives us lots of motivation to work on that. I'm really nervous, but we feel very honored that Laurel has been asked to be the only non-family member in the wedding.
WOW, now I know why they're so excited about the head switch at Laurel's school!
We got it set up for her here last night. I have never seen her be
able to react so fast to anything. I downloaded a program that has seven
free tries and 17 different activities that range in difficulty. I
started at the beginning, with the simple cause-and-effect activities.
She was just going click, click, click, cycling through what the
activity did, until it was obvious that it was repeating itself and then
she'd stop. Then I'd set her up with another activity and click, click,
click again until it started to repeat. One was a guy that goes up
stairs, then an escalator, then down an elevator, and she quickly
figured out that if she held the switch down he'd move faster. We only
played with it for maybe 15 minutes or so, but when I looked at the
software's summary of what she'd done, she'd hit the switch 120 times!
Left cheek, right cheek, chin, it was all good. She'd often only be able
to push a button with her hand maybe 2 or 3 times in that period of
time. It was really exciting and I'm dying to see how she does with the
more complicated activities! Now maybe we will finally find out what
this girl is capable of. 