We're leaving for NC tonight [for a November '00 Playgroup
get-together] and WE'RE NOT EVEN PACKED! We actually did decide to run
the ad on Sunday for a new babysitter and so last night, same as every
other freakin' night, I spent most of my evening interviewing and
returning calls. Having gotten 35 calls would be a lot more exciting if
we were getting more good candidates. I bet at least 30 of the 35 are
CNAs (certified nursing assistants, I think that stands for) and most of
them have no experience with kids other than maybe having one. Some of
them are real pieces of work. Last night, for instance, I talked to one
who was wondering if we had any evening hours. I said,
"Occasionally we might need an evening sitter, but for the most
part, the hours are 12:30-6:00 like the ad says." She said, "I
have a job till 2." So I said, "Well, that won't work now,
will it?" 
Right after that, I got a call from someone who wanted to know if it was
OK if she only worked 3 days a week. Um, no, that's why the ad says
M-F... 
Looking forward to spending a weekend with people who have more than
two brain cells to rub together. If we ever manage to get packed and
outta here! 
Update on babysitter, carpeting, etc....
Last night we hired a new babysitter. This one really turned up at the 11th hour - we were sitting there at 7 PM Tuesday night, having been blown off by our last scheduled interviewee (would you believe the last *three* were no-shows?) and saying, well, I guess we should call back the first one we talked to, ask for references, and make sure she can afford what we can pay (it had sounded a little dubious). Bob hadn't liked her that much though, and I had liked her all right but wasn't totally fired up about her, so we weren't saying this with a great deal of enthusiasm. Then we got a call from this woman who had left a message, and I had called back but not right away (having gotten 37 phone calls, it took me a while to return them all) and it turned out that she had been out of town. She has worked as a classroom assistant for special-needs kids and taken care of a couple of kids with CP, so I interviewed her Wednesday night (Bob was in WV). We only got hold of one of her references, but it was one of the moms of a CP kid and she told Bob that our applicant had been talking to her to do some more research on CP! So we decided to hire her. She is obviously very interested in helping special-needs kids and I think she'll try hard with Laurel.
Now the carpeting, get this - the store has closed! I last spoke to the salesperson last Thursday, when she told me that she had found another source for what she believed was the same carpeting and was just waiting for a sample to come in to be sure. When we tried calling on Monday, we were told she was doing inventory. When we tried calling on Tuesday, there was no answer but a sign on the store said that they were closed for inventory Monday and Tuesday. On Wednesday, the store was still closed and the sign was still up. On Thursday, the store was *still* closed and the sign was down! At this point, we have contacted Wells Fargo (who did the financing and who fortunately we haven't actually sent money to - it was supposed to be one-year-same-as-cash), Carpet One (the parent company) and the consumer advocate at one of the local papers. Wells Fargo has at least assured us that we are not liable if we do not receive carpet (thank heavens) so we don't have to worry about being out $3300, which was our first concern. However, they also told us that the carpet store had sent them an invoice saying that our carpet had been delivered! And Carpet One didn't even know there was anything funky going on with this store. So at this point our biggest concern is just to get this mess cleared up so that Wells Fargo is clear that we didn't get any carpeting and aren't bloody likely to from these folks, and move on with getting some carpet from somewhere else. We are hoping that maybe the consumer advocate can help us with that (she described our story as "appalling").
Meanwhile I came down with some crud immediately after we got home
from NC! I hope I didn't manage to give it to everybody else there too.
I guess it must be the same stuff that Bob and Laurel had, because I
seem to be moving into the "coughing up a lung" phase. Oy. We
were supposed to go to Pittsburgh this weekend but decided to cancel on
the grounds that we're wiped and just need to veg. I bought an
egg-coloring kit with sponge paints and glittery stickers that I'm
hoping maybe Laurel will be able to do something with. 
April 11, 2004
We're worried about Laurel.
Well, OK, on some level we're *always* worried about Laurel. But she has been having these head jerks and the last couple of days she's been having a lot more of them. This morning she was having them every minute or two. Two things that are making us feel a bit better are that they don't seem to be fazing her and we're not seeing the eye deviation like we did with the infantile spasms. And when she was a baby, sometimes she would develop a tic for a while and then it would disappear. But of course we can't help but worry that her seizures are coming back. I'm sure we can't get an appt with her neurologist any sooner than we already had one (May 20th) but we are going to call his office and see if we can schedule an EEG for before then. Please pray that they're nothing!
I called the doctor's office on Monday and was told that they would like us to 1) keep a diary of the head jerks for a week 2) come in for a blood level on her seizure med (Depakene), which we're going to do on Friday. And then we're supposed to reconvene with them next Monday. So far since we've been keeping the diary it seems like the jerks are all happening when she is straining with gas or a BM, so I'm hoping that it's just a weird muscle twitch that has somehow gotten itself associated with that. Bob is afraid that if her med levels are down at all the doc's knee-jerk reaction will be to up the Depakene, but I am *not* going to go along with that without an EEG.
We're feeling more discouraged about Laurel's head jerks since my
post yesterday. Especially Bob is - I'm trying really hard to not
get too wound up yet, until I have proof of what they are. I know how
depressed this is *going* to make me if they are seizures - it would
probably mean Lennox-Gastaut Syndrome (because that's what happens to
kids with a history of infantile spasms), and so far as I know, kids
with LGS never do well. So I'm trying not to go there until I know
that's where we are. But Bob is the one who's been seeing most of them
lately, because they've been happening in the morning. Which I think is
part of what has him worried, because infantile spasms often happen upon
waking. I think also the fact that she was straining with gas last night
and *not* having them is a worry because that makes it seem that they
are more likely associated with her waking. Anyway, he is very depressed
this morning and I am just trying to hang in there, like I said.
Although I can feel a nasty stress headache coming on. Perfect, just in
time for an important meeting at work. Which I'm also feeling very
stressed about right now. I feel like it's just been one thing after
another lately, although this would be a whole different level. One good
piece of news that I have is that Wells Fargo is removing the carpet
loan from our credit report. But of course I would trade $3300 for a
seizure-free daughter in a heartbeat. 
I finally got to see Laurel laugh last night! Bob's not really sure why she laughed the first time - he was just on the floor with her and not doing anything particularly funny. I was in the basement and heard her laugh and ran up the stairs. No more laughs were immediately forthcoming so he tickled her and she laughed again! (Mind you, we have tickled this kid hundreds of times and at best we've gotten a smile.) She laughed a couple more times until I guess she got tired of it. I feel like those laughs are slowly bubbling to the surface...
I had a couple of rounds of phone conversations with the nurses at
the neurologist's office yesterday. The conclusion is that they're not
sure what's going on either, but her med levels are fine, and they agree
that she needs an EEG (it's always SO nice when they're on the same page
with you). Problem is that given that she is mostly having the head
jerks after she wakes up, in order to catch them on an EEG I think
she'll have to be admitted to the hospital (as much as I would love to
never spend another night there). The second nurse was asking me
questions like, "If you sleep-deprived her do you think she'd sleep
in the car and at the beginning of the EEG and then we could get
them?" But I don't feel like we can count on Laurel sleeping if
she's worked up because strange things are going on (mostly I think we
could just count on her being really cranky
). However,
apparently they are backlogged on admissions. I'm waiting to hear back
on when they think they could do it - I'll let you guys know when I do!
So would you believe June freakin' 7th? That's the soonest they can
get Laurel in for an inpatient EEG. They'll admit her at 11 AM, never
mind that she mostly does these things in the morning and they'll be
over with by then and we'll be stuck pointlessly sitting around in the
hospital until the next morning. But they always do their admissions at
11 AM. Argh. A month and a half...I think my head may explode. 
Laurel's teacher told me that yesterday she sat supported by her
hands on the floor, Indian-style, for a minute and a half! Of course,
that's still a long way from sitting independently and being able to do
something with her hands, but how cool to think of her there on the
floor with the other kids during circle time. Her teacher also told me
that Laurel was able to paint all by herself using an adapted
paintbrush.
The bad news is, the reason the teacher called in the first place was to talk to me about how upset Laurel's been lately. She's been more upset for us, too, and I actually went home early the other day because Laurel was so hysterical for the babysitter that she couldn't put her down to get her any Motrin or anything. Our best guess is that it's teething - her gums look red around one of her 2-year-molars that isn't all the way through, and also I can see the outline of the last one that hasn't come through yet a lot more than I could. That always brings a lot of gas, too (and drool, which we are definitely seeing). The teacher asked whether we had learned anything from the doctor about her head jerks (see Christy, you're not the only one to get the date confused!), and of course we haven't, but I guess that goes to show that it's in the back of her mind that they could be connected, and it's been in the back of my mind too. I really hope not but I don't *think* so - at least the periods where she is getting really upset are various different times of the day. On the other hand, one of the things that one of the nurses said was that teething can be a trigger for seizures. Oy.
Anyway, despite the bad stuff that's going on, we're happy that she is also doing some cool things this week!
[Posted by Bob]
Laurel had a happy day at school today. I picked her up from school today and her teacher said she was in a much better mood. A little crying but generally happy and she ate all of her snack. I think its just been teething and its had nothing to do with those head jerks.
Always nervous to write these kinds of posts, but things seem to be settling down around here.
Laurel has overall been in a better mood lately, and overall, we've
seen fewer head jerks this week. This morning she was in a great mood
and there were only two. Her oral feeding has been picking back up too -
yesterday she ate a whole jar of spinach lasagna (our little pasta girl,
things involving noodles are always her favorites
) and a couple of ounces of apples with sweet potatoes.
I've been killing myself at work lately - had to work 9 1/2 hours on Saturday, which was GORGEOUS here so that totally sucked, and late the last two nights - but met my deadline, which was today. I have enough hours in that I shouldn't have to work the rest of the week but have something I need to go in and do today. Hoping to leave early though, and not planning to go in tomorrow (although we have Laurel's IEP meeting tomorrow afternoon so it's not like it's going to be a really fun day). It's beautiful here again today so hopefully I will get some gardening done.
Laurel's NACD re-eval is Monday so we are leaving tomorrow night to spend the weekend with BIL and family. They live less than two hours from NACD but we haven't been able for one reason or another to get together with them for over a year. We're planning to take Laurel and her cousins to see Tom Chapin on Sunday, which should be fun.
And, we found a dealer who had the carpet we wanted! They are 45 min
away so we are having to pay some extra for travel, but they are
supposed to install it next Thursday! So we are really looking forward
to the end of our carpet saga. We did end up getting written up in the
consumer column of one of the local papers along with someone else who
had problems with the same company - don't think that accomplished much
except giving the Fearless Consumer a way to fill some column space
though.
Finally on the Laurel front, yesterday we sent in our forms and
deposit for her to do the Sensory Learning program. Hopefully this will
really help her sensory integration and vestibular (inner ear) problems.
We did another sample session with her (we did one back in January but
decided to wait until we were out of the cold and flu season before
committing) last week and it went terrifically well - she was so relaxed
and mellow afterwards. She'll start on Monday, May 10 and we'll have to
take her twice a day for two weeks, then followed by a light program at
home for a couple more. Fortunately we will have just finished in time
for her EEG, so now that she doesn't seem like she's getting worse by
the day that timing is not seeming so bad. Anyway, I will let you know
how it goes!