We're back...
It was kind of a rough trip to D.C. In addition to continuing to be a
sad girl anyway, Laurel's sensory integration problems were really bad.
So where she usually does fine in crowd situations for a while before
she melts down, she just wasn't handling them this weekend. Bad when you
have three 8/9-year-old boy cousins.
Bob thought the problem might be the Keppra, so we've backed her down a
little bit. We are noticing that she is sitting up better again (she had
started to get really floppy) and that her eyes are holding steadier
(one sign that she is having sensory/vestibular problems is that she
gets nystagmus, where her eyes waver back and forth), but Bob said her
seizures were back this morning. The appt with the neuro's assistant is
tomorrow, thank goodness. We have also started a brushing program with
her, which is a sensory integration technique we've used on her before
with some success.
Anyway, there were a few highlights to the trip. On Friday, we went to
Great Falls (on the Potomac), figuring they'd be really amazing after
all the rain - and they were. Laurel enjoyed the walk, but got scared on
the bridges over all the water. And on Saturday, we took her to the new
Museum of the American Indian, and she enjoyed the singer/storyteller,
the dancing, and the prism in the wall that cast rainbows on her. But we
spent a pretty big chunk of the trip in the hotel room, and didn't see
the rest of the family too much, between the fact that they wanted to do
things (like go to the Spy Museum) that we knew Laurel wouldn't be into,
and the fact that Laurel wasn't dealing well with them.
Monday, Laurel seemed tired and happy to enjoy a quiet day at home with
her sitter while we drove the middle part of Skyline Drive with Bob's
parents. Then we shot off fountains in the driveway in the evening. I
liked Monday. 
Yesterday we went to a picnic at a friend's house, which probably would
have been an OK idea if it hadn't been 95 degrees with nearly equal
humidity, and their air conditioning was broken. I think we lasted less
than an hour and a half, and we had such a hard time cooling Laurel down
we were sorry we went that long. But by the evening she was OK and we
had a mostly successful outing to see the fireworks (they lasted about
10 minutes too long for Laurel).
She was a sad girl again this morning but seemed better when I left -
our babysitter is out today so I was home till 2:30 (Bob's home now). As
a reminder of happier times, I have finally figured out how to turn this
voicemail Bob left me a couple of months ago with her laughing on it
into an MP3. (The context here is that there was some conjunction of
buzzer noises on this "Blockbusters" game that TiVo had
recorded as a suggestion that Laurel thought was hysterical - at least
for a while till she got bored with it. But before she did, this was
captured for posterity...
)
Laurel
laughing
Update from our visit to the neuro's assistant today.
Laurel was in a terrible mood while we were
there, so we had no trouble convincing her that Laurel has been extra
irritable lately! We mentioned our leading theories (either the six-year
molars we can see bulging under the gums in the lower back or the Keppra)
and she added a third possibility, that her other seizure med (Depakene)
can raise ammonia levels in the bloodstream which can have irritability
as a symptom. It's been a long time since she had her blood levels
checked re: Depakene anyway, so Bob is going to take her over tomorrow
morning for a blood draw (whee - I'll miss the fun as I have an ADA
conference to go to tomorrow). The assistant did agree that it could
also be either of the other two things. She said that some kids do
better with Keppra given three times a day (smaller doses) than two
times a day, so we decided to try that, starting immediately. She of
course suggested Lamictal (the one that can cause the potentially fatal
rash) if Keppra just doesn't seem to be working out but also mentioned
another med she hadn't brought up before, Trileptal, so I'll have to
research that one.
I also made an appt with Laurel's dentist for next Wednesday. She's
overdue anyway (should have been in May but didn't happen with
everything else that was going on), and we can talk about those molars
(how likely they are to be a cause and whether there's anything we can
do to help).
She's been better this afternoon and evening, actually. Seems unlikely
it could be due to the change in Keppra dosing already? Maybe could be
the brushing (we got all six in today)? Who knows? (Kids make such lousy
science experiments for us impatient parents who can't wait for one
variable at a time... 
)
Our home study report has arrived! And it is
favorable (not that I was too worried, the social worker certainly
wasn't giving any hints of it being otherwise). We can send off the last
of our paperwork on Monday! And then we wait for the USCIS
approval...last hurdle before China! If only our friends hadn't told us
that it took them 10-12 weeks... 
Update on Laurel (and me too - long)
Well, in the last 24 or so hours, Laurel has
had a blood draw, a catheterization, a rectal examination, and a teeth
cleaning. All in the name of trying to figure out what the heck is bothering
this kid! So, what do we know?
1. Despite the fact that sometimes Laurel cries when she pees, there is
no obvious sign of infection, either physically or at first examination
of her urine. (They did send it off for culture.) There are also no
other obvious things that the pediatrician could detect.
2. Despite the fact that Laurel is drooling like crazy and looks for all
the world like her six-year molars are coming in on the bottom, they're
not. The gums have that whitish look just because they're so high they
touch when she closes her mouth. And her teeth are good.
3. Her ammonia levels are a little high. The neuro's assistant
says that she has seen kids with higher ones and no problems (she said
something like normal was like 12 - 31 and Laurel's was 43), but still,
it's a red flag and we need to back down on the Depakene (the seizure
med that she's been on since she was 6 months old). We have dropped her
from 5 ml 3x a day to 4 ml 3x a day, and she's supposed to get another
blood test in 3 weeks. Meanwhile, rearranging the dosing of the Keppra
has not been a good thing. Actually, the day after we started (Friday)
was an awesome day for her - best in just ages. But on the weekend she
was right back to being miserable. And then the seizures started getting
really bad - yesterday's morning seizures didn't stop until 11 AM or so.
We can't mess with the Keppra right now, because we're already messing
with the Depakene. So the assistant has given us yet another med,
Tranxene (another thing in the Valium family, and also an anti-anxiety
med, probably not a bad thing), to give her before bedtime. So far, so
good - no seizures at all this morning. Although she does seem really
tired. But then again, she did just go to the dentist.
So, that's the news on Laurel. I'm not convinced that it's all about the
meds like the pediatrician said, because sometimes she seems to be in
real pain, but I don't know what else could be going on.
Meanwhile, I am so freakin' tired:
1. In the last 24 or so hours, Laurel has had a blood draw, a
catheterization, a rectal examination, and a teeth cleaning.
2. She's been miserable most of the time in between.
3. I've gotten up two hours early today and yesterday to go do those fun
things.
4. Our babysitter was off the last two days due to a horrible contagious
yeast-based facial rash (she's been getting treatment and it looks way
better now). So I've been wrangling miserable girl until mid/late
afternoon and then going in to work.
5. One of my Freecycle co-mods let me and the other co-mod know that she
was going in on Monday for a biopsy on a mass on her pancreas. We
haven't heard from her yet.
6. A woman who has been on the Nov '00 board that I also post to since
we were all pregnant together faked her own death. No kidding.
7. Someone on Freecycle sicced their momma on me! Really, a woman who is
married with two kids called her momma in on the big bad moderator. I
mean, it's kind of laughable, but I SO didn't need the additional drama.
8. Bob and I had a bad fight yesterday afternoon about whether to take
Laurel for Feldenkrais this weekend (I wanted to, he wanted to do it in
two weeks). I'll spare you the details, but he got very much on the
offensive.
I seriously curled up on our futon in a fetal position last night. I
think there have been a couple of times in my life I've needed a
vacation worse, but this has got to rank in the top five. But, the
babysitter is here and I'm going to work.
I'm scared to call it a trend yet, but Laurel has done pretty well the last couple of days. Actually, I understand the babysitter took Laurel over today to visit a friend who has a baby and Laurel had a wonderful time - laughed every time the baby laughed! So I'm not really prepared to declare victory yet, but we have decided to go ahead with the plan to take Laurel up for Feldenkrais.
Adoption news (already!) and Laurel news...
OK, adoption news first. We were
in Northern VA doing therapy with Laurel over the weekend, and were very
surprised to find the notice of our fingerprinting appt waiting for us
already! And it's Thursday! Trying not to get too excited here, because
the letter that came with it did say that "applications are being
adjudicated approximately nine weeks after receipt of the Home
Study." However, it also said that "Fingerprint appointment
notices are mailed approximately 15 days after receipt of the
I-600A" (the application) - and ours was mailed two days after! So,
well, we're 13 days ahead of the game, anyway.
Our appt is at 8 AM in Alexandria, but lucky for us there is an Econo
Lodge right across the street that had a room for $63. Who'da thunk we'd
be headed back to NoVA again so soon?
So, Laurel. First off, Friday was a big day - we had a summer school
teacher out with her OT at 10, then the semi-annual children's rehab
center extravaganza from 12:30 to 3:00 (like the kid hadn't spent enough
time in doctors' offices that week!). The summer school teacher is
coming once a week for four weeks to work with Laurel and the
computer/switch, and the OT was there to show her what to do. I learned
a couple of things that they do differently at the school, so that was
useful, and Laurel did very well with the switch, when she wasn't trying
to pull the board that was obscuring the keyboard off. 
I totally think she gets that people use keyboards to run computers, and
she wants to do it that way too (her hands are always all over the
keyboard on our laptop [this was the school's], which we don't have a
board for), but she just doesn't have the motor skills to do that.
Let's see, we learned a few things at the rehab center:
1) Laurel is 44" tall - that day she weighed in at 41 lbs, but
mostly she's been weighing in at 42. The folks at the center were
pleased with her growth.
2) The results of her bone density scan showed that her bone density is
2 standard deviations below average. Not great, but also not a great
surprise for a non-mobile kid. The good news is that they said that
generally, you don't get an increased risk of fractures until 4 or 5
standard deviations below average. So that's good to know. The
nutritionist is supposed to calculate her calcium intake and let us know
whether we should give her a supplement.
3) The OT there watched Laurel play with one of her light chaser toys
and suggested we try a wobble switch, like the first one on this page: http://enablingdevices.com/viewproduct.aspx?id=623
. We thought it was a great idea, I'm going to order one right away. I
think it will be way easier for her than pressing a button, and she
really seems to want to do things with her hands right now, rather than
her head.
Laurel had been in a pretty good mood Wednesday and Thursday and Friday
morning, but not surprisingly it was shot by the end of the visit to the
rehab center. Unfortunately it didn't really come back for the weekend,
either - except that she was really good for three of the four therapy
sessions! Overall, it was probably the best weekend ever for therapy.
But she was whiny the rest of the time (we tried to visit a friend from
the Nov '00 board but only lasted I think about 45 minutes). Bob looked
the side effects of Keppra back up and we're really thinking that's the
problem. Bob is going to call the neuro's assistant tomorrow (we were
supposed to call Tuesday anyway), but we're not sure she'll let us do
anything with Keppra since we just changed the Depakene. We so want to
get this kid feeling better before we're off to San Francisco (Aug. 12),
though.
Thought I'd close with a picture of Pretzel Girl doing her therapy
:
My mom's house has been sold, already - closing
will be the first week of August, if we can get the things the FHA
inspection found fixed fast enough (I just found out what happened with
that this morning - sounds like a couple thousand dollars worth of work,
but no deal-killers). My sister first told me that she had had two
offers on it a week and a half ago (and accepted the second, which was
$6,000 above our asking price) and I felt like I'd been gut-punched when
I heard it. But I felt better after she told me about the buyer, and I'm
almost OK, I guess. The buyer does sound like everything I could
have hoped for - a single mom who loves to garden and is VERY excited to
have the gardens and the atrium. (I'm not sure if I mentioned the atrium
- it's an addition my parents put on in the '90s. It has big windows on
two sides and skylights across the ceiling, and a dirt floor. My dad
designed it, and my mom used it to grow things like orchids and
camellias. It had really fallen into neglect in the last few years,
though, and Marie and I got the lawn guy and his crew to pull out the
dead stuff and we spread mulch and planted impatiens and begonias, just
so it wouldn't look so barren.) So I am glad that the house is going to
someone who will appreciate it! But still in some shock that it's going
so soon.
We are SOOO confused on the Laurel front. She ended up having a great
day yesterday, so we put off calling the neuro's assistant till today.
All in all, in the last week she was in a good mood 50% of the time and
a bad mood 50% of the time (I would have written off the weekend as her
just not wanting to be away from home, but she was just as cranky when
we got back Sunday evening). But her seizures were terrible this
morning. So, we are going back to the way we were dosing the Keppra
before (2x a day instead of 3) and upping the Tranxene. Hopefully we'll
get this figured out eventually and this too shall pass, but I can
hardly wait.
Back from our fingerprinting appt -That went
more smoothly than I'd dared to hope! I have an important meeting at 1
PM today ($20,000 in grant money for a project at work is hinging on it)
and the idea of having this appt that was going to take an unknown
amount time more than two hours away was causing me to have kittens. And
when I saw the long line outside the USCIS office at a few minutes to 8
this morning, I about gave birth to them right on the spot. But, it
turns out that the USCIS people know how to process a crowd, and we were
done by about 8:30. Laurel was an angel the whole time! I had a lady
originally from China doing my fingerprints, and after she asked me
where we were adopting from and I told her China, she said something
like, "We have good babies in China. No problems with those
children."
You know, it's really silly of me in retrospect, but I have to admit in
the back of my mind I was envisioning something involving ink, not a
machine that looked sort of like a copier. Anyway, it's done.
If it weren't for my $#%^! doctor, there wouldn't be anything to do now
but wait! The form that my doctor had to fill out for the dossier had a
mistake again (we're on our third attempt now) and his notary is
out of town until July 31 - meanwhile, apparently the date of my
physical has to be within six months of when the Chinese embassy
authenticates it, and it was Feb 6 (so six months would be August 6).
Haven't figured out what I'm going to do about this yet. 
Meanwhile, Laurel's mood remains good, but her seizures remain bad.
Bob's going to call the neuro's assistant again today. 
Gotta run! Glad to be back from the fingerprinting and to my regularly
scheduled life, anyway.
Two happy bits of Laurel news & quick adoption update...
1) Laurel's sitter told me that yesterday while
Laurel was napping, she was saying "Mama, mama, mama" in her
sleep! Laurel has never done anything like that before. If you guys
remember, Laurel both smiled and laughed in her sleep way way way before
she did them while she was awake. I wonder if there's any hope that this
means that someday she will be able to say some words?
2) Laurel ate a whole jar of stage 2 baby food in one sitting this
morning! OK, what a strange thing to be applauding my 5-1/2-year-old
for. But stamina is one of the main obstacles at this point to her
eating orally, and this is the most she's eaten at one sitting in a
really long time, if ever (I'm trying to remember if she did this once
for a sitter we had two years ago). The sitter said she didn't push
Laurel at all - Laurel just kept opening her mouth.
(No real news on the seizure front - the neuro's assistant said to try
splitting up the Tranxene dose and give her some first thing in the
morning, but it didn't seem to make any difference.)
3) Adoption update - we (well, Bob!) solved the problem with the
doctor's notary. Bob talked his HR person into coming over to the
doctor's office at noon today to do the notarization. I looked the form
over REALLY carefully and I think it's OK. It's now sitting in a FedEx
box waiting to be picked up! NOW, hopefully, we're really just down to
waiting.
Another med change for Laurel...
The seizures have just been getting worse and
worse, and Laurel has been tired and groggy and never seems to be able
to sit up any more. So Bob called the neuro's assistant again on Monday,
and she called back and said that she had talked to the neuro and they
wanted to see a video tape - for one thing they wanted to make sure the
movements were really seizures. Well, we taped Monday night and Tuesday
morning, dropped the tape off on Tuesday, got a call back on Wednesday
but they called our house (never mind that we have given them every
number we can be reached at). Bob talked to the neuro's assistant this
morning and she said, yes, they were really seizures. DUH!!!!
C'mon folks, after 5 1/2 years of experience, give us some credit here.
Anyway, now we are going to take her off Tranxene (slowly) and put her
on Zonegran, another drug that can be used as an adjunct therapy for
partial seizures (we had originally talked about Trileptal, but they are
saying now that they are a little worried that she may be having general
seizures [because sometimes both arms move instead of just one] and that
that could make them worse). We are going to reduce her Keppra a little,
too, since it was at the higher levels of Keppra, before we even started
the Tranxene, that the tiredness and floppiness started (although they
seem to be getting worse). We won't know what to do about her Depakene
until we get her blood tested again next Tuesday.
So that's the latest. Please send lots of positive thoughts that this
does the trick! We are not feeling so hopeful anymore, but we want so
much both for the seizures to stop and for her to act more like her
normal self. It's on my mind all the time lately.
Here's a picture of Laurel with her new switch...
She was more interested in this
than she's been in anything for a while. We had lots of fun watching her
play with it last night! Now, I had pictured that the switch worked by
it sitting on the floor and Laurel pushing the yellow lever, but
Laurel's method of picking it up by the yellow lever and setting it down
at an angle worked just as well.
Well, no improvement in the seizures yet (we JUST started the new med yesterday though because the pharmacy had to order it), but she's been perkier the last two evenings. Still really groggy during the day but then waking up to play in the evening (great...last night we couldn't get her to sleep until 1 AM...). She did some more great switch work with another toy tonight (this time she was pushing the lever) and also did pretty well using that switch with the computer, until she realized that the space bar on the computer did the same thing (I hadn't put a board over the keyboard) and then she wanted nothing more to do with the switch, even though the space bar was harder for her to keep her hand on. I still say the kid just wants to use the keyboard like she sees other people doing. Anyway, I had fun playing with her again tonight, so even if she's keeping us up right now it is nice to be having a good time with her - it seems like it's been forever...