WE
JUST GOT OUR USCIS APPROVAL!
I can't believe it's here already - it only took about 3 weeks total! I
just spoke to our dossier consultant, and she thought we could probably
make the August 18 Dossier-to-China group! I am SO excited!
In other good news, Laurel's repeat blood test came back normal this
morning, so we don't have to reduce Laurel's dosage of Depakene any
further for now. (Although in bad news, the seizures aren't any better.)
And on Monday, Laurel ate half a squashed-up peanut butter & jelly
sandwich in one sitting! The only other thing raining on our parade
right now is that our sitter has only worked one partial day in the last
four, which is really getting to be a strain with our jobs, especially
as we're trying to get ready to leave for San Francisco for two weeks on
the 12th. But we're all (including my boss!) repeating the mantra,
"Just another week and a half, just another week and a
half..."
Just wanted to tell you guys what a good girl
Laurel was at the Jimmy Buffett concert last night! I can't say the
concert went 100% great - we waited an hour and 20 minutes to park and
didn't get to our seats until after the show had started, and I darn
near passed out from the heat (it was still 93 degrees at midnight! And
I did get seriously woozy for a while) - but Laurel sat calmly in her
wheelchair for the whole show, smiled at us when we danced next to her
and helped her clap her hands, and seemed generally to enjoy herself.
Overall, it was a good night. 
She also let us take her to the mall tonight and actually sat calmly
while we did some shopping! That is a FIRST. Also cool, we FINALLY got
the insurance company to buy us a backpack that's made to hold her pump,
so we were able to do her tube feeding and keep right on, rather than
having to stop for almost an hour while we did it by hand like we always
used to. The combination of calm Laurel + pump backpack just seems like
it ought to open up all kinds of possibilities for finally getting out! 
As you can tell, we've achieved a happier child (for the most part -
just figures, as I write this she's whining) - we are fairly convinced
it really was the ammonia levels. And since we've been dropping the
Tranxene, her alertness level has REALLY improved. She feels much more
her old self again. Now if we could just get the seizures worked out...
Long post-trip and first-day-of-kindergarten update...
We got back from San Francisco Saturday night,
but Sunday was just crazy with getting Laurel ready for her first day of
kindergarten yesterday - by the time I'd finished the illustrated
tube-feeding guide, it was 1:30 AM. And I had to get up at 6:30 so I
could go to the school and do the tube-feeding training. I got about a
half-hour break in there but otherwise didn't escape the school until
12:30 (keep in mind that I'm supposed to be at work at 12:00) and I
stayed at work till 7:00 plowing through e-mails, then went home to fill
out forms. I understand there are a bunch more for me to fill out
tonight. 
And we
have a milestone - Laurel has her first homework - we need to read a
story to her.
The trip went pretty well, although maybe not quite as wonderfully as
last year. For one thing, Laurel didn't transition as well into the
program, which I'm thinking may be because unlike last year, she had the
summer off instead of being in summer school until right before we
traveled. And it seemed like we had a drama queen episode pretty much
every morning when we dropped her off. It was sweet to see how much her
friend Cameron (who was with her in last year's summer program and at
BRIGHT camp the year before) calmed her down on her first day, though -
they laid him down next to her and she quieted and started reaching for
him.
It also seemed like the whole time we were there we were fielding calls
and e-mails regarding Laurel's starting kindergarten and/or the
afterschool program (which thanks to the bureaucracy she can't start
till tomorrow because we didn't get a slip of paper filled out till
yesterday and there is a 48-hour wait after the piece of paper, even
though the aide has been hired since May), so it was hard to relax and
take our minds off home as much. Still, we did some fun things,
including lots of hiking, wine tasting in Sonoma, visiting the Asian Art
Museum, and seeing the tide pools and elephant seals along the coast.
The program results also didn't seem as obvious for Laurel this year,
but by the end of the program she was twisting her back less (which has
been a real problem for her lately) and sitting up better (her sitting
has been awful lately, too). Given that she only had two weeks instead
of three, that's probably pretty good. Both the staff at the program and
the friends we stayed with commented on how much better she was eating
this year and how much more alert and responsive she seemed.
Laurel had a really hard time with the plane rides this year, especially
coming back. It seemed like she was in a lot of pain, either because of
her ears or the gas in her tummy (she had a lot of problems with that
when we went with our friends up to their house in Truckee [which is I
think at 7,000 feet or so] over the weekend, too). And then to top it
off, Bob had a brain fart and put her feeding tube in Laurel's luggage
instead of her carry-on, and we didn't realize it until after we got to
the gate. So we were on the plane frantically trying to feed her
applesauce, and she was becoming increasingly unhappy and less able to
eat it. But I swear, she started to calm down as soon as the jet's
engine noise started changing for the descent, and she was fine all the
way through the airport, which helped to assuage our guilt about her
hunger. And after a heart-attack moment when our bags were THE LAST FIVE
PIECES TO COME OFF THE PLANE, we got Laurel's tube-feeding going, a
friend of ours in Northern VA who kept our car while we were gone came
to pick us up, and we started to decompress.
Laurel's first day of kindergarten was a tough one, too. I think she got
to spend all of about ten minutes with the class - the rest of it she
was being poked and prodded by various staff members who were learning
how to do transfers and tube feedings and stretching exercises and
whatnot. A little after 11 she made it clear that SHE HAD HAD ENOUGH,
and we left her in her chair for a power drowse (I don't think she
really fell asleep) while her tube feeding was going on. But I think the
staff was catching on OK - I was particularly impressed at what a quick
learner her morning aide is - and overall, I'd have to say that Laurel
was a real trouper.
Laurel did do one cool thing at school yesterday. Not long after Bob and
I got there, she was given a switch that, when she pressed it, said,
"Hi, I'm Laurel." Then all the staff were introducing
themselves (and making a point of introducing themselves to her) and she
did a great job of pressing the switch as they were doing it. Maybe not
at all the most appropriate times (she had a tendency to drown their
introductions out with it), but she kept pushing it during the
introductions, and stopped when the introductions stopped. (And then the
OT programmed it to say, "I'm really excited about school!",
but she wouldn't press it after that. 
I kept reassuring the poor kid that school wasn't going to be like this
every day.)
I'm not as sure about what happened today at school. The note from the
teacher said that she was fussy in the afternoon (I guess at least today
she spent enough time in class for the teacher to know that...).
Laurel's sitter, who is now her afternoon aide, said that Laurel had
been pretty upset when she walked in, but that when Laurel saw her she
stopped crying and gave her a big smile. Laurel often takes time to
transition, and it's largely a different staff from preschool (except
for the therapists, but aside from the therapists I swear there are
about 12 other people working with her - I have yet to figure out who
they all are) and all different kids except for one, so hopefully things
will get better as the days go by and everybody gets used to everybody
else. Also, as near as our former sitter could tell Laurel had been
stuck in the wheelchair all day, but she has already taken that issue up
with the other staff and has requested a mat for Laurel for floor play (yay,
her!). I mean, come on, nobody expects any other 5 3/4-year-old to sit
quietly in the same chair for 6 1/2 hours!
On the adoption front - our dossier consultant inconveniently had her
baby two weeks early (LOL) so our last piece of paperwork didn't make it
in time for the August 18 dossier-to-China group. I got an e-mail
yesterday that she had just sent it off to the home office, though, so
as long as the home office gives it the okey-dokey we will be in this
Friday's group!
That's the news - looking forward to getting this week over with,
hopefully by next week we will be settled back in!
I've never been so excited to get a bill!
"Dear Robert and Rochelle:
Congratulations, your dossier is being sent to China on Friday,
September 1rst. At this time, your final invoice is due. Please print
the attached invoice for your records. Call or e-mail me if you have any
questions."
(In not-so-thrilling news, Laurel is sitting on my lap as I type this
because her former sitter/current afternoon aide had to leave early and
they don't have a back-up trained yet. I got to spend two whole hours at
work. Arrgghhh... 
)