April 8, 2005
I spoke to the reproductive endocrinologist this morning at my ovary
check and he agreed that it was time to talk. Ovary check was fine BTW,
two small cysts but nothing show-stopping. Anyway, what was decided was
to start doing the testing that would be needed before I'd be accepted
into their IVF program, which includes the dreaded CCCT (clomiphene
citrate [Clomid] challenge test) and a saline infusion sonogram. So...Clomid
this month. Whee. Oh, that was SO much fun the three cycles I did it.
Not. No IUI. (I think after that 136 million thing the last cycle
they're kind of questioning the need!) Blood draw today, another next
Friday, and the sonogram on Tuesday. And then we will see. The CCCT
makes me nervous, I've seen so many women on the Over 40 board come back
with bad results on that. I'm in a funk, but I need to stop funking and
start getting ready for a meeting tonight (taking a break from the
babysitter interviews - which are wearing on me too - to make a
presentation to our Commission this evening. Not sure which is worse.
Although at least we had one good babysitter interview already, which
makes us feel better).
So we are now a week post-op and post-cast, and it's been very up and
down. Last Thursday was of course rough, Friday wasn't too bad, the
weekend was rough again, Monday and Tuesday she was pretty mellow,
yesterday she was AWFUL. It got really warm here and I think she wasn't
dressed lightly enough and got sweaty and the casts got itchy. She kept
rubbing and knocking them against each other. Bob actually had to take
her away from the interview we were doing; that's never happened before.
But she seemed better this morning.
UGH, I am just tired! Must. Get. Coffee. Now.
WOO-HOO, I passed the CCCT!!!!!!
FSH was 9.9. The nurse's message said it was a squeaker (they wanted
under 10) but I swear the information sheet they gave me on the CCCT
said 12. Anyway, I PASSED! The saline infusion sonogram was OK too. I
think the only other test we have to do for the IVF program is a more
detailed SA - which we are getting too close to O time for me to be
willing to sacrifice now so we'll have to wait a few days for that. 
I'm frankly in shock - I don't think I really expected to pass!
I've been meaning to post an update but just haven't had time! We did
hire a babysitter last week, after a hairy little cliffhanger. I tried
to call our first choice Sunday around 5 PM. Well, it turned out that
she and her DH had gone out for a night on the town - I left a message
for her to call me back as soon as she got back, no matter the time.
Meanwhile, about 9 PM, my second choice called wondering why she hadn't
heard from us. I decided to be up-front with her and tell her that it
was because she was our second choice and I was waiting to hear from our
first choice. She was OK with that. So the first choice calls at 11 PM
and says she has been thinking about it and has realized that there
would be a lot of carrying involved and did we have anyone else we were
considering? We were really disappointed because we had thought she'd
done great with Laurel at the interview and she had stayed with the last
person she cared for for seven years (until they went into a nursing
home), but like Bob said, it was probably a bad idea to try to talk her
out of it because someone coming in with a lot of doubts would be more
likely not to stick it out. I really dithered on calling #2 at 11 PM but
couldn't stand it and did. She said she was still up, was excited to get
the job, and could start the next day. And so she did.
I don't feel like I know her well at all yet - one thing that was
different from every other time we've hired someone was that our
previous babysitter stayed Monday and Tuesday to train her. Which was
great for us (we've sucked so much leave time into training babysitters)
but leaves us having less of a sense of her than we usually do by now.
(On the other hand, she and the previous babysitter hit it off great and
promised to stay in touch. I understand that the former babysitter has
been calling every afternoon to keep up on how things are going.) I'm
impressed that Laurel seems to really like her (the previous sitter
thought Laurel liked this one even better - she thought maybe because
she can handle Laurel more comfortably) and that she's been doing
Laurel's program faithfully (we're still doing the NACD program for now
- I'm planning to make something up myself in the next week or two). But
not so impressed that it doesn't look like she's been doing Laurel's
oral feedings. I need to talk to her about that tonight. My biggest
concerns about her staying are that she is currently living with her
parents but planning to move out in August, and that she's planning to
go back to community college at some point. I worry that she will find
out (as a couple of our other sitters did) that she can't live by
herself on what we pay, or that she will have trouble coordinating her
class schedule with her job schedule. And I have to admit that those
concerns were influences on why she was our second choice. But our third
choice didn't seem as physically capable of handling Laurel (and, when
Bob called her to tell her she didn't get the job, it turned out she'd
already accepted another one anyway). Past #3 our issues really got to
be too large to feel comfortable with hiring them. So, crossing my
fingers that this one sticks around despite my fears (and that we get
that feeding thing worked out). I guess even August would be an
improvement on our usual retention time!
In other news, Laurel has been in a much better mood the last week or so
than she was the first week after the surgery. Last week was really
hairy for me at work (hence the lack of time to post till now) because I
had a grant proposal due that I had been short of time to work on
because of having to leave early every day to interview babysitters -
but I got it in, and got a call today from the State Department of
Environmental Quality that it won't be submitted for grant program A but
is considered a strong candidate for program B, which will open in a
couple of months. And we are close to finalizing a trip to San Francisco
(staying with friends in Oakland) in August for Laurel to attend this
conductive education program for three weeks: http://www.theavalonacademy.org/
An added bonus to the hoped-for therapeutic benefits is that this is a
program we would be dropping Laurel off at each weekday, so for six
hours a day we could explore the San Francisco area sans Laurel. 
Bob was in a serious funk last night about the chances of this or any
other program helping Laurel, our long-term financial outlook, and
everything else he could think of, however, so I'm not thinking of this
as a done deal just yet.
Taking deep breaths after walking out of Laurel's IEP meeting.
We had an absolutely disastrous IEP (Individualized Education Plan,
sets the goals that Laurel will work on with her therapists for the next
school year) meeting today. To begin with, we got the draft IEP
yesterday - lots of time to read and digest, no? I read it over this
morning and was struck by the fact that virtually all of Laurel's oral
feeding goals had been removed. The only thing that was left was that
Laurel would use eye gaze to choose between foods. No more "Laurel
will drink 2 oz. of thickened liquid," "Laurel will eat 4 oz.
of puree," "Laurel will eat X amount of a meltable
solid," etc. In fact, I had noted and commented at our last
"team meeting" that most of the things on her IEP under speech
and language goals (which is where the feeding goals were) had not been
introduced this year, even though they had actually been introduced
toward the end of last school year. I KNOW that she was making progress
over the summer with thickened liquids, because the SLP (speech/language
pathologist) at the time (who had been Laurel's SLP since the early
intervention program) gave us a demonstration. Unfortunately, that SLP
quit in September to go to another job. The SLP who was hired in her
place shortly went on maternity leave; now that she's been back, I could
not be less impressed. She speaks so little at the meetings I'm not even
sure what her voice sounds like. The PT or the teacher usually end up
answering any questions we ask related to the SLP's goals. Unlike the
previous SLP, who genuinely believed in Laurel (when she started with
Laurel, she honestly believed in Laurel more than we did - I really have
to credit her and NACD as the two sources that helped us get our faith
back in our daughter), or even the PT who doesn't believe in Laurel but
at least gets passionate that she's comfortable and her range of motion
is OK, I feel like this one's simply occupying space.
Anyway. We didn't get too far into the meeting before the topic came up,
since the second thing on the agenda was "Concerns of the
Parents." And I was informed (Bob hadn't gotten there yet) that
those weren't really educational goals so much as medical goals, and
furthermore that without a swallow study and doctor's recommendations on
what Laurel can and can't eat that they just didn't feel that they could
proceed. My protests that none of this had mattered on her previous two
IEPs (incidentally, we have a different teacher as well as a different
SLP) fell on deaf ears. And never mind that there has never, ever been
any evidence that Laurel aspirates (which is what the swallow study
would be to determine), even back when she was vomiting six times a day.
And the one time we did try to have a swallow study done, it was
short-circuited by Laurel's lack of motor control with liquids, and the
conclusion was that the SLP needed to work with her to get her to the
point where she COULD have a swallow study done. Bob walked in on the
middle of the argument and didn't last too long. We went another round
or two (with increasing anger on my part), then the teacher informed us
that "This is the decision of the team." The PT added that the
school was actually doing us a favor by pointing out that a swallow
study hadn't been done (as if we hadn't been aware of that). I told her
that she could try to tie a pretty pink bow on it, but it still stank.
At which point Bob said, "I can't do this anymore" and stormed
out. I hadn't gotten quite to that point myself, but I didn't have the
will to stick it out by myself and I WAS pretty darned angry, so I
followed him out.
SO. Here we are. I'm thinking it's just as well that Laurel isn't going
to school tomorrow (she's getting her casts off). Meanwhile, I'm
thinking I'll call the former SLP and ask her advice. Actually, I'd love
to get her to be an advocate for us, but I'm not sure her work schedule
will allow it. And *I*, meanwhile, am having my evaluation at work
tomorrow, which was just scheduled yesterday after I made the mistake of
complaining at the staff meeting that I hadn't had one (and therefore an
opportunity for a raise) for two years, and I have all kinds of stuff
I'm supposed to type up in advance for that and haven't been able to
focus on it at all. UGH. I so did not need this excitement...
Laurel's casts are off, and my evaluation went great!
I can't say that our visit to the children's rehab center to get the
casts off was exactly joyful, given that it was over four hours long! It
took them 1 1/4 hours just to get to taking the casts off. Then she had
to be fit for her AFOs (ankle braces), and then it turned out that
although the doctor had talked to us about getting temporary, soft
plastic braces until the permanent ones are ready in several weeks, he
hadn't written the order for them! So he had to be tracked down, and
then we were hit with the news that our insurance might not pay for them
and they're several hundred dollars. At first we told them to find out,
but then we decided, well, if she needs them she needs them, so we said
never mind (especially as finding out seemed to be taking a while), just
do them. Well, the soft plastic has to be heated in hot water in order
to be molded and it takes the water over an hour to heat up! So they
told us to go eat lunch and come back. Turns out there's a cafeteria at
the clinic, we've been going there for 4 1/2 years and had no idea. Man,
that place is a maze. By the time we got done with lunch, I really had
to leave because the last thing I wanted to do was be late for my
evaluation! So Bob stuck it out. He said the temporary brace fitting was
awful, took over an hour and they didn't get home until 2:15. Poor kid
was STARVED - she was due for her tube-feeding at 11 AM. And the
cafeteria didn't have anything suitable to give her orally. She can
usually go for an hour or so past her feeding and it never occurred to
us that she'd be getting home later than noon! I talked to Bob a little
while ago and he says she's finally feeling better and very tired now (I
bet!).
Anyway, the good news! I got a $1.95/hour raise, I'm moving to salaried,
and I'm back on the Virginia Retirement System! I was only four months
from being vested when I was taken off (because I wasn't working enough
hours at the time - that only lasted a few months, but I never got put
back on) so looking forward to being able to count on some retirement
money for myself. The review overall went great, they had lots of
complimentary things to say and weren't actually as hard on me as I was
in my self-review. There are a couple of things they feel I need
improvement on but they weren't surprises. Mostly the review was very
upbeat and a HUGE improvement from the one I had two years ago! It's
clear that our executive director's opinion of me has risen a lot (as
well it should have, LOL - I knew I wasn't as bad as he thought I
was).
So, the cast ordeal is over, the review ordeal wasn't an ordeal at all -
if only the IEP ordeal were over! I didn't get a chance to call the
former SLP last night, but it's definitely on my list of goals for the
weekend. I've gotten some helpful links from a couple of brain-injury/CP
groups I posted to with regards to our rights, etc., so I have some
research to do too (like I didn't have anything else to do this
weekend...). After getting some input from those groups and thinking
about it myself, I don't think we can fight at least getting an
evaluation from the children's rehab center because they are claiming
concern about her safety (although apparently we could argue for the
school to pay for it -not sure if that would be worth the fight since
insurance will probably cover it - some people were advising me to do it
to show that I know my rights and others to choose my battles) but I
think we CAN demand that appropriate goals be placed in her IEP pending
the results from the CRC, and if they want a fight on that they can
count on it. Laurel is going to be going to
this exact same school with the exact same cast of idiots (with the
exception of the preschool teacher) for another seven years (one more
year of preschool and then K-5) so we'd better get it right now or it
will haunt us for years.
Anyway! I can't do anything about that right now so I should go back to
happy thoughts for a bit...I got a raise, I got a raise, I got a
raise...
!