WAAHH! Laurel's teacher isn't coming back next year! She called to
say that she unexpectedly got into a a PhD program, so she will not be
teaching Laurel next year after all (she had said at Laurel's IEP
meeting at the end of April that she was, but I guess at that point
there wasn't an opening in the PhD program). We're happy that she's
furthering her career, but so sad because she has been great with
Laurel. Now we're going to have to break a new one in! 
Laurel has come a long way lately with use of her hands. Last night I
got out a cloth book with flaps to lift up and a little taxi that moves
back and forth on a ribbon. My mom and I bought it when she was very
little, before we realized how impaired she was in her arms. I had stuck
it in the closet and forgotten about it, until I ran across it the other
day and pulled it back out. Laurel pushed the taxi back and forth
several times and lifted several of the flaps, all by herself! I know
that just a few months ago she wouldn't have been able to do that. It's
so much work for her, but she is trying. I'm so proud. 
I am SO angry - $%#*!! insurance company!!!
Laurel will NOT be going into the hospital on Monday for a video EEG because our insurance company has denied coverage! We are going to have to do a 24-hour ambulatory EEG instead, which means they hook her up with stuff and send her home. Of course this means there will be no video component. And the hospital doesn't know yet when we'll be able to do it! If it follows the usual pattern, I'm sure it will be weeks at least.
Pardon my french, but how the hell did we end up with these son-of-a-bitchin'
insurance companies practicing medicine for us?!?! I'm so angry I'm
having a hard time not just getting up and leaving work. All of a
sudden, I have a whopping headache... 
Wow, a major miracle has occurred...
Bob called back and they actually had an opening on Monday! They said that normally the wait is eight weeks. Bob said that the staff he talked to was as shocked as he was! So the EEG will be starting just a couple of hours later than we originally thought. Phew. Well, hopefully we will see something on the ambulatory EEG and we won't have to ride the insurance claim ride again. The staff also told Bob the insurance companies do these last-minute denials all the time. Do they have to study to be such jerks, or do they just hand-pick 'em?
Feeling a little limp after today's ride...but at least left with some hope that we will still get to know something soon.
Well, we are recovering from the EEG...that was SO not fun. Laurel didn't feel good to begin with (she has a little cold) and was miserable from the moment they started prepping her head (she hates having her head messed with, I think it goes way back to the EEGs they did in the NICU). The way it worked was, they glued a couple of dozen electrodes on her head and taped a couple of leads on her chest. They were all connected through long wires to a box that was maybe about the size of a couple of VHS tapes but a lot heavier. It was a real juggling act! She just hated having the stuff on her head and kept trying to rub it off (she got the protective stocking they'd put over it off in nothing flat) and pull the leads off her chest (she managed to get one of those wires disconnected from the box and then we couldn't figure out where to put it back). She struggled all evening, went to bed at 11:30 and woke up at 3 AM. About 3:30 AM, Bob was trying to hand her off to me and the box fell on the floor and almost all of the wires detached from it. So at that point we gave up and turned it off. We couldn't do anything about the electrodes though, because they use this cement that they have to apply the solvent for. We did manage to get her in a couple of hours early, so they came off at 11 instead of 1.
The good news is that she had several of the head jerks before the box got dropped, so hopefully the doc will get what he needs. We won't know for a while - the techs told us that the results won't be read till tomorrow and then it'll be another 7-10 days until the report makes its way to the neurologist (which seems completely ridiculous to me, but I know that's what we've been told other times she's had an EEG). So by that time we may already have left for WI - guess I will give the doc a call before we go and see if he's got anything yet.
Anyway, we are in recovery mode now...Bob and I are just beat and we
both called in sick, and Laurel's still a bit cranky but a lot happier
than she was. The sitter's here at this point, so Bob's taking a nap and
I'm typing this. I may go join him. 
So glad it's over...
Feeling a bit sad...today is Laurel's last day of school for the year.
This is her last day with Miss Amy and also, might be her last day of class with her two best friends, the "reverse mainstream" (i.e. "normal") twins. I talked to their mom a couple of days ago and she told me that there was a similar program opening closer to their house so she might put them there next year. They live half an hour away - the reason they wound up in the class was because mom is friends with Miss Amy. I sure see her point about spending two hours a day driving but will be very sad if they go - I think they have been one of the high points of school for Laurel.
In the end, school's been a mixed bag - I think the second half of the year was especially hard because a couple of boys started who are pretty disruptive (one of them especially so, to the point that there are safety issues with him). Laurel's new IEP had a lot of goals about Laurel not crying and Laurel doing things that we *know* she can do at home, and we walked into the IEP meeting wondering if she should even be at school. The upshot of the meeting wound up being that she will stay in school but they need to 1) get another aide in there, because they really seem to have more high-needs kids than they can handle and 2) create sort of a "quiet place" behind a screen or something that Laurel can retreat to when things are getting to be a little much. And school does seem to have gone better the last few weeks as well. So, I'm mostly feeling sad that it's over, and especially about Miss Amy, Brooke and Madison. Hopefully we will manage to do some visiting and keep in touch!
Laurel will be going to summer school, but it's only from July 12 - August 5, and it'll just be for special needs kids. Her speech therapist will be the teacher, though, so at least she will have a familiar face there. We're having her babysitter come early for the days where we'll be home and she isn't in school (from a financial standpoint, glad that's not too long...).
Good news/bad news on Laurel's eating.
The good news: Yesterday she ate about 3 1/2 jars of puree. I added up the calories on the three jars we'd rinsed and it was 195, over 20% of her calories for a day!
The bad news: This morning she threw up! We're worried that she
couldn't handle that much food. I'm hoping that maybe it was just that
the last food I fed her was spaghetti with cheese. I was kind of dubious
about that when I saw it in the cupboard, but I thought a little cheese
might be OK and that she'd probably enjoy it. Anyway, she's not getting
any of that today and we're crossing our fingers that it was a one-time
occurrence! 