Yesterday we went to a birthday party for another November '00 kid, David, in Northern Virginia. We missed most of the actual party (which ended at 3, just about when we got there) but we had a nice couple-hour visit. Laurel was really snoozy when we first got there so we just let her snooze while we chatted with Merrianne (David's mom), then when she woke up we took her out to the moonbounce. We were out there for quite a while and she must have had a great time because she cried when we left Merrianne's! Here are a couple of pictures:
Thanks so much to Merrianne for inviting us!
Well, last I saw Laurel, she wasn't too happy...we took her to the dentist for her check-up this afternoon. Having her teeth cleaned made her cry and she was still trying to deal with the air she'd swallowed when I left her with the sitter. Last night something Bob was doing with her - sort of a whoops-a-baby thing where she was sitting on his lap facing him while he held her hands and he was dropping her upper body down over his legs and back up again while saying "Hello - Goodbye - VROOOOM" - made her smile so big we really thought for a while that she was going to laugh, though.
Anyway, the upshot of the dentist trip was not so great. The dentist wants her to have her teeth sealed, and also she has a chip from grinding her teeth that needs to be filled. They will either sedate her or give her general anesthesia - once they decide which they want to do, they'll call us to schedule.
In better news, she is about two weeks seizure-free now! She has been on the full dose (which is just the minimum therapeutic level) of the new med for about five days - it does seem to be making her a bit sleepier, but otherwise she is doing well. Hopefully she will get used to it. She was having really horrible gas pains for the first couple of weeks, but the neuro's assistant tells me this would be unlikely to be caused by Topamax. We sort of wonder if it was from an ill-fated experiment with Fruit-Eze laxative a few weeks ago, but the gas and pain just dragged on and on after we stopped. She struggles with gas pain a lot anyway (ironically, the whole reason we tried the Fruit-Eze was to see if it would cause her less gas than Miralax), but this was above and beyond. She was crying so much that Bob and I were on each other's last nerves. But I finally thought to try some acidophilus and she has been doing better for the last week or so, except that then Monday she had some sort of bug or something that made her throw up and scream to the point we were convinced she had an ear infection - but Tuesday she seemed fine other than being tired. I'm hoping to take her to a children's concert tomorrow night to celebrate her birthday (but I have to reschedule her speech therapist; I wasn't that enthusiastic for making her do therapy on her birthday anyway, but she missed her Monday session).
Anyway, that turned into a book - but it's been way too long since I posted a Laurel update. I guess the summary is, after a rough patch she seems to be doing better. She's had a couple of times in the last week where she was pretty happy, and hopefully we'll start seeing more!
Wishing Laurel a happy 5th birthday!
It's hard to believe she's five. Actually, Bob and I have been a bit
depressed about it, because it doesn't seem like she can do that much
more than she could when she was three or four. We'd hoped she would
have gotten further by now.
But anyway, especially lately (the way she's been feeling) she needs more happiness in her life, and I'm hoping this will be a good day for her. We went to school for her party and they said she'd had a great morning - she seemed in a really good mood when we got there - but then she fell asleep just as her party started! I guess it's better than what she used to do when she saw us at school, which was to act up. But I was sad that she missed the dancing and the bubbles (we brought cupcakes, hats, and bubbles for the kids, and since we brought Wiggles plates/napkins/hats the teacher put on the Wiggles and the kids started dancing).
Her babysitter brought her daughter over (I think she's maybe 2 1/2?) to play, and this evening we're taking her to see a kids' concert (Billy Jonas, has anyone ever heard of him?). I imagine it'll be kind of late by the time we get home, so we'll probably do presents tomorrow.
Anyway... 
to Laurel!
The concert went really, really well - she was in a great mood and we saw several big smiles when Bob helped her do the arm movements to the songs. Wish I could say the same for the rest of the weekend - she was miserable for most of it. We didn't even open presents until Sunday and then we kept starting and stopping as she got upset again. We finally just powered through to get it over with. She did seem to enjoy the toys and books. I'm SO glad we went to the concert, though - at least now there is one really nice memory from her fifth birthday.
I wish I knew what was going on - I'm still worried that it's the
Topamax. Not only is she having tons of gas, but we've discontinued her
laxative and she's STILL going several times a day. I did a search, and
although a number of websites don't list diarrhea as a side effect of
Topamax, some do - including the Topamax website itself. I don't know
what to do, except I guess stay the course for now...it still hasn't
been long enough that we can't say for sure it isn't a bug or something,
and even if it's the Topamax maybe she will get over it with time.
Whatever it is, I hope we get past it soon... 
We're back from a really great set of therapy sessions...
After the first set of Feldenkrais sessions in Northern Virginia, I
didn't feel like Laurel had gotten all that much out of them, but she'd
been in a horrible mood so I thought it was worth another go. We took
her up again for two sessions yesterday and one today, and something
really clicked! (It was at least partly that Laurel finally started to
trust the therapist - it was clear through yesterday morning and the
beginning of the afternoon session that Laurel was very nervous. I think
therapy sessions must usually be very painful and difficult for her.) At
least for the moment, Laurel seems to have found her back, and she is
sitting SO much better than she had been recently. (Mind you, she still
can't sit independently - she needs assistance with balancing.) I feel
like we've regained some of the ground we've lost since San Francisco. I
would be SOOO excited right now, except we're in such a quandary about
what to do next! We feel like we should quickly follow this set of
sessions up with another set, so we don't lose ground. Except that the
therapist is not going to be offering regular sessions again until next
year! The first weekend in December, she's having a parent workshop (not
one where you bring your kid), and the next two weekends are these
wildly expensive respite sessions she's doing with some friends of hers.
Each 4-hour session includes half an hour of therapy (which, since she's
a PT, our insurance is covering at 75%), and then it's $20/hr for the
childcare and another $10/hr for nursing care (which she is considering
Laurel to need because of the tube feedings - nevermind that Laurel
hasn't had a nurse give her a tube feeding since the NICU... 
). So we'd be looking at something like $261 (there's a slight price
break for going the whole day) for her to go for eight hours and get one
hour of therapy. Plus a hotel room because it starts too early for us to
get up there in the morning. Meanwhile, because of the insurance
coverage, it would only cost us $125 (plus a hotel room) for us to take
her for four hours of therapy over a weekend, but that's not a choice
until January. I'm feeling very frustrated and annoyed about the whole
program, like I'm being forced to spend more money to get less if I want
Laurel to have any therapy before January. (And mind you, there is only
one other practitioner of this type of Feldenkrais on the whole East
Coast - in New York City.) And yeah, there's that respite aspect of it -
but for $80 we could get 8 hours of respite here. Argh.
Well, we'll figure something out, I am just getting tired of trying
to figure out about money! We have already decided not to go to
Minnesota (where Bob's parents and sister live) for Christmas this year
because of the money
. I guess for the moment, I should focus on the happy fact that Laurel
made progress this weekend! And the mountain of cleaning we have to do
before my sister and Mom get here on Wednesday. 
Laurel's seizures are back. 
She was doing great, and then all of a sudden three days ago they were
back (actually, Bob just told me that he first saw them a week ago, but
that he didn't want to tell me and ruin Thanksgiving) - about half as
bad as they were at their worst, but a lot worse than they started off
the first time. I am so worried that we're not going to be able to keep
them under control. Time to call the neuro's assistant again...
More Laurel news - she had her 5-year checkup today.
Well, first off, the neuro's assistant's nurse (did you follow that? 
) called back on the cell phone on the way to the appt and told us to up
Laurel's Topamax dose another 1/2 tab in the evening, wait a week and
then another 1/2 tab in the morning. When we saw the ped, she told us
that it's not uncommon for the body's metabolization of the drug to step
up after a person's been on it for a while, so that the dosage needs to
be upped. I am so hoping that that's all it is!!
The ped said she thought Laurel's breast development seemed exactly the same as when she saw her at the beginning of October, so not to worry about it any more right now. She said Laurel's nose and throat seemed kind of yucky and we had some discussion of whether it was sinusitis or an oncoming cold or what. She offered us a course of antibiotics, but we decided to wait and see.
Otherwise, Laurel weighed 38 lbs (50th percentile) and measured 41 1/4 inches (25th percentile) - which seems kind of short (we got an estimate of 43 inches at the children's rehab center in the summer, but that was from a femur measurement because they couldn't get her to stretch out), but she was relaxed fairly well so maybe it's right. I'll probably try another measurement at home some time, though. The ped commented again that every time she sees Laurel she's progressed, and I pressed her on what she meant by that and she said that as well as her growth (which is honestly pretty extraordinary for a CP kid), the way she was obviously following our conversation and the way she seems more aware of her body.
So it was a good appt, at least until we got to the finger stick (for
a hemoglobin measurement, which was fine) and three shots. Although
Laurel calmed down a lot faster than she used to. I'm feeling somewhat
reassured about the seizures and will at least hold off on getting
really worked up until after we've finished increasing her dose. So now,
I'm refocusing my being worked-up on the fact that it's cycle day 1 of
our big IVF attempt, I need to have my meds by Wednesday morning, and
they haven't been shipped yet (injectible drugs for IUIs and IVFs have
to be shipped, at least here). I'm waiting on pins-and-needles for the
doc's office to call back - the holdup is the physician's prior
authorization - they have to fax stuff to the insurance company which
has to realize that they've gotten it and give the pharmacy the
okey-dokey. I'm thinking if I haven't heard from the doctor by 3:30
(i.e. 45 minutes from now), I'm calling again. I swear, it's always
something! But overall, I'm feeling better than I was this morning. 
It turns out we are counting today as cycle day 1...(TMI ahead)
It looked like I was off to a good start yesterday, but after about
half a tampon I dropped down to spotting. Overnight things really got
going, though, so I asked the doc's nurse which day we should count as
CD1 and she said today. So that gives me another day to get the meds,
which is good, because the doc's staff are being complete idiots about
the whole thing. Patty, their billing/insurance person told me this
morning that she had called CIGNA (our insurance), and they had told her
to use CIGNA Tel-Drug. I said, "But the order was already called
into Schraft's." She said, "Will you have to pay more if you
use Schraft's?" "No, it's exactly the same." "OK,
then, we should probably use Schraft's. I'll talk to the nurse and have
her call you." So the nurse calls me about half an hour ago.
"If Schraft's still needs a physician's prior authorization, you'll
have to have them call us." Me: "I'm sure if you haven't sent
one you still need to, and it's not Schraft's that needs to get it, it's
the insurance company." Her: "Oh, I'll have to have Patty call
the insurance company." AUUGGGHHH!!! 
I'm not sure exactly what to expect schedule-wise yet - that's another thing, the doc still hasn't called me to tell me exactly what the regimen will be. I know that at some point a few days after I start the meds, I'll go for an u/s to see how I'm progressing. If it goes anywhere near like the IUI cycles, then I'd guess retrieval would be around CD 10 or 11 (Dec. 8th or 9th, which would just figure because Laurel has the semi-annual children's clinic extravaganza scheduled for the 9th). But that's something I want to ask the doc about - since it's a different mix of meds, I don't know whether to expect it to be faster, slower, or about the same. Then the embies will be put back three days after retrieval, and it's on to progesterone shots in the butt and the 2WW.
Anyways, thanks so much for your good wishes, and that's the latest!
WOO-HOO! The pharmacy just called & the meds will be here between 9-12 tomorrow. Yay!