The doctor just told us to soak it in water and antibacterial soap
for about 20 minutes, cut it back as much as we can and then bandage it
up with antibacterial ointment. Oy, this should be
fun...especially as I have to go to a meeting of the class tonight
that's been working on a project for me and I won't get home till maybe
half an hour before her bedtime. 
(I wish I didn't have to go tonight - but it's their last class. The
prof called me last Tuesday and said, "Can you come to the class
either tonight or next week?" and I said, "I can't come on
such short notice tonight, especially as my husband's been home all day
with my daughter because she has the stomach flu. I can come next
week." And he said, "Well, next week is their last class, so
it would really be better if you could come tonight." Um, sorry,
maybe you should have called me a little sooner if that's what you
wanted? 
)
Taking care of the nail actually wasn't too bad - I think soaking the
nail first really worked wonders, and the nail had just started to be a
problem. Laurel was really quite patient about the whole thing. I think
the class was worse - each student or group of students had to stand up
and give me a report, and then I had to think of questions to ask or
something intelligent to say. It was hard work! 
Geez, are sandals without heels really too much to ask for a
6-year-old? Yesterday Laurel had a horrible day at school, and
when Bob got her shoes off he found out why - one of her toes had gotten
bent up funny and her shoes were tight enough that she couldn't move it.
So I ran up to Target and bought the next size up (13, which was with
the girls' sizes instead of the toddler sizes - the end of an era...).
We usually put her in sneakers, but we've noticed that her feet are
getting really hot in them and I thought I might also pick her up a pair
of sandals, since we're getting into warmer weather anyway. But I
couldn't find any that didn't have heels! Most of them 1" to 1
1/2", I think there was even a 2" heel. Am I the only one who
thinks that's a bit much for a 6-year-old? Aside from my moral
objections, I couldn't imagine she'd be comfortable in the things, so of
course I didn't buy them. Is this what all the stores are carrying now?
What are other girls wearing? 
Tired, depressed, angry, and in a general funk right now...
Laurel's IEP meeting is tomorrow (well, later today at this point).
The IEP was sent home tonight. Of course, this means I didn't get a
chance to look over it until oh, about half an hour ago. And see the
note that says that we are not going to go through it in the meeting,
there will only be time for questions and comments, because they have
another meeting to get to . Yeah, like I'm formulating all kinds of
brilliant questions and comments at midnight. Not. Actually, since I
started this post, I wound up firing this off to the "team":
You know, I had been feeling like the "team" (which, as Helene
made clear back in preschool, doesn't include me and Bob) was working
better this year than it had in preschool, but faced with an IEP meeting
tomorrow when we didn't get the IEP until today (which means I didn't
get to read it until half an hour ago) and only an hour meeting in
which, we are informed, we have no time to actually go through the IEP,
I'm thinking not. It's not the actual content of the IEP I'm objecting
to - hell, I'm too tired to really be sure how I feel about the IEP,
aside from a sense of depression that she hasn't made more progress -
it's the process, in which we are an afterthought and a rubber stamp.
The only reason I think we're even invited is because we have to be. And
I feel forced into going to this meeting tomorrow with no time to
prepare and no time to be brought up to speed (and it's been just months
- like six maybe? - since we've met with the team) during the meeting,
because you all will tell us that it's the only time you can all meet
before the end of the term. I really feel that we deserve a better
process than this one.
(back to my post)
In the meantime, Laurel was sent home today for being too miserable -
just when I thought we were getting somewhere - I think last week was
the first week since the surgery that she made it to school all five
days. We're not sure why - gas is the leading theory, but we're by no
means certain, nor are we sure why it should be so bad today. And the
IEP shows little progress over last year - which is probably accurate
because she's been incredibly difficult to work with these last several
months - but it's depressing. Her progress reports also indicate that
she is both being very inconsistent and actively resisting work (I guess
the one positive was that they are detecting a definite reaction to the
communication card with the word "work" on it 
). So I can't help but feel some despair here. I've known for a while
that we aren't going to get very far with Laurel physically, but now I'm
worried that that's going to go for mentally as well. Bob told me
tonight that he's sure that Laurel will eventually just end up ignored
in a corner of some facility. 
When Bob talks depressingly (not uncommon) I usually try to rebut him,
but hell, he could be right. I don't know...
I'm doing better today...
To start with, I was pretty nervous going into the IEP meeting - this
is the answer I got to my e-mail:
I am so sorry you are feeling this way. we are quite a large team, and
so to coordinate and get everyone there can be a challenge. the letter
you received, saying that we are going through the areas of concern is
one we sent out to all parents to streamline all our IEP meetings. The
meeting will absolutely take as long as it needs to so that we can go
over all the concerns then. I do apologize for the IEP getting sent last
evening, but again, the coordination of all the specialists so that the
IEP is not piecemeal takes a significant amount of time to put together.
I did check with both you all and the team about setting up several
meetings from January on, but I thought it was general consensus that we
hold off repeatedly due to the operation and subsequent absences
throughout the spring.
If you feel that you won't be ready for the IEP tomorrow afternoon at 3,
please give me some alternative afternoons in the following two weeks so
that I can see when we can reschedule the meeting. It is certainly not
our intent to have you not feel part of the team.
To which I responded:
Well, it definitely did not feel like a form letter when it came with an
underline and star on that part of the letter and also a note that
"I have another one at 3:45." And yeah, we're all busy, but is
that an excuse to basically exclude the parents from the process? I
would have thought that maybe you guys could have used some of the time
you weren't meeting with us (and I do not remember multiple attempts to
schedule a meeting this winter/spring, I remember one discussion at the
end of February/beginning of March) to maybe get the IEP out sooner or
at least communicate with us SOMEHOW. I don't even know what you, Dori,
do with Laurel. Are you just the person who schedules the meetings?
I guess I feel like if I cancel the meeting today I will miss out on a
scarcer-than-hen's-teeth chance to actually talk to the team. I would
frankly rather keep the meeting and see if I feel like I need an
additional meeting at a later date.
<back to post>
So. Walking into the meeting was definitely awkward - the person who had
written back to me (I had e-mailed the entire "team") was one
of the first people there. But we all decided to be civilized human
beings, and they decided to go back to the way we've done IEPs in the
past, which is to go through it page by page. Which of course can't be
done in an hour - it took two, which is usual. The person who had
another meeting at 3:45 (the special ed staff person who works with
Laurel) wound up leaving and coming back. I learned early in the meeting
that the actual IEP was written in a "pre-IEP" meeting amongst
the "team" (which, despite assurances from staff, it was still
clear that by "team" they meant "staff"), which I
asked if there was any way I could be invited to next year and I got the
impression that they'd just as soon I didn't come, but I will keep
pushing and I don't think they have any legal standing for keeping me
out. They kept pointing out that it was a long meeting, but that's OK -
if I have to take a day off to know what's going on with Laurel's IEP
sooner than the night before the meeting, I will.
The content of the meeting itself was actually kind of reassuring. One
thing that I got from talking with staff was that she is doing much
better than she was when the last progress report was written. I think
the most encouraging thing I heard was that she has been able to make
yes/no choices up to 9 out of 10 tries in a session within the last two
weeks. Also, they had to argue to get her in summer school, but the
staff totally felt that it was worth it because they feel that she is
taking off with the communication book (I think that was the thing that
they had the 9/10 success rate with). I feel like Laurel is a moving
target right now and I'm thinking that we should schedule a
"team" meeting sooner rather than later next fall to see if we
need to change any of the goals, because they might be pitched a bit
low. But we did make some changes at the meeting and I'm willing to go
with these for now. One thing the OT said was that she wanted to not set
the goals too high, because Laurel was picking up on the OT's
disappointment when Laurel didn't make her goals. So, maybe the approach
is to set low goals and change them more often - although that will
obviously require more communication than I've been able to get this
year. Hopefully next year will be a better year for Laurel, and I'll
have more energy for it.
In other news, Laurel finally made it to the dentist yesterday morning
(we've had to move the appt like five times because she was sick or in
pain). She was SO well-behaved, didn't cry once or fight even though the
chair puts her in an awkward position and the process really sets off
her gag reflex. We were so proud!! She had no cavities 
but six loose teeth! The dentist said that she will probably lose the
bottom middle two within the next week or two, and we're to keep
wiggling them (since she can't do that for herself) so we can hopefully
get them out ourselves rather than taking the risk of them coming out
and choking her.
And in other other news, we were approved for the Medicaid waiver for
Laurel and are now playing phone tag with someone to set up a plan for
her. The waiver means that our co-pays for her doctor and therapy visits
will be covered as will most of the cost of respite and summer care.
WOO-HOO!! 
So mostly good news this time, although we could hear Laurel crying most
of the time we were in the meeting yesterday
and Bob wound up taking her home early, so it's sure not 100%. There
seems to be a minor war going on among staff about Laurel's chair - two
weeks ago it was set to hold her more restrictively (to keep her from
tipping her head way back, which is a habit she's developed since the
Spica cast) and the PT feels that it's necessary to force Laurel into
the proper position, while other staff feel that it's just too extreme,
Laurel is fighting it and it's hurting her and distracting her from
other things. (I'm in the second camp myself - and this is one of those
times where I feel like I don't have control over what happens to my own
kid. As I said at the meeting, I think we need to work on the head
positioning in other ways [like at Feldenkrais], because if you push
Laurel she pushes back.) It sounded like her aide was going to work
today on finding other places to put Laurel. We're mostly not using the
chair at home, although I want to get her comfortable in it so we can
take her places. Bob has suggested we take off the whole headrest
assembly, and I suspect we'll try that this weekend. Anyway - so it's
always something - and I wish it could stop being anything for a while
so I can catch my breath! But overall I'm feeling a lot less bleak than
I was the other night.
Our kitty is hyperthyroid...and some other news bits...
Yesterday we got the bad news that the reason our cat Jenny's weight
was down and her heart murmur was worse at her check-up on Tuesday was
because she's hyperthyroid (the vet had done some blood tests to check).
Soooo, we have to give her half a pill twice a day and bring her back in
several weeks to make sure that her kidneys are still functioning OK
(apparently in hyperthyroidism, the thyroid can sometimes end up driving
the kidneys, and then when you correct the problem the kidneys shut
down). Once the hyperthyroidism is under control, we can consider cure
options, but those would be $800-$1200 depending.
Well. Won't this be fun.
It just figures that this would happen as things are settling down with
Laurel (actually, I guess it would have probably happened sooner if we
had had the energy to get Jenny in to the vet sooner for her check-up -
but my point is, it's always something). Laurel's still not happy in her
wheelchair and so that's still causing some difficulty at school (partly
what's ending up happening is that the staff are finding more ways to
put her somewhere else), but she is being pretty normal at home now
(where we don't use the wheelchair that much). We've been getting
homework done, I've been getting to the gym, we've been getting out some
on the weekends, Laurel went back to the speech therapist on Wednesday
(actually, she would have been back sooner but the speech therapist had
a death in her family), life is starting to feel routine again. Laurel
feels like she's checked back in and is doing a much better job of
answering questions and paying attention when we talk to her than she
was. The other night, we talked about potty training and for the first
time, she indicated that she was ready to try it. The sign is supposed
to be when she touches her left knee. We'll see how this goes (so far,
all we've accomplished is some practice sitting on the potty).
Laurel did pick out her own shoes for the very first time last weekend.
We went to the mall, which mostly she wasn't that into for once
(probably the wheelchair thing again), but she was very very patient
while trying on sandals. We just looked at some at Penney's first,
because you had to get someone to help you, and then we went to try
sandals on at Payless. When we were all done, though, I asked Laurel
which she liked better, these (plain white ones) or the ones at the
other store (with colored flowers), and she could NOT have looked away
harder when I asked her about "these" or given me a better
look for "the ones at the other store". So Laurel is now the
proud owner of a pair of sandals with colored flowers on them. I had no
idea that she had such strong opinions about footwear! I'm hoping to get
a picture of her modeling them in Pittsburgh.
Which brings me to my last news item, that we are going to Pittsburgh
for the weekend. With some trepidation on my part - for instance, I was
bursting into tears every time I thought about leaving the parking lot
of the hotel we usually stay in and not turning for my mom's house.
(We're staying in a different hotel.) But at the same time, I want to
check on the plants on my parents' grave (it's a REALLY old-fashioned
cemetery that lets you plant things, and there's a mini hosta for my dad
and a columbine for my mom), see how the inscription came out, and take
Laurel to do some stuff (wheelchair intolerance willing) - there are a
lot of good activities for her up there.
So please wish us luck, we could use it on several fronts! 