Sunday, August 13, 2006 at 10:17 PM EDT
Where has the summer gone??!?
Well, I guess the weather would indicate that it's still around,
but I can't believe we're halfway through August.
Sam was discharged the first time almost exactly 1 year ago today,
and I'm amazed at the difference a year makes --
and incredibly, eternally grateful.
Okay, so we've been to Lexington twice since the last update,
and I told them how the strap-on legs weren't really working out,
so they removed the straps, and we've gone back to the original leg plan,
with the liners and bolts, and they do stay on a lot better. Sam's still not thrilled with them, but we're not in any rush, so we'll let her adjust to them at her own pace. The liners fit very snugly, and squeeze the stumps a bit, so I think that's a little uncomfortable.
I plan on starting her in PT again soon, and I've been told there's someone nearby who has experience w/prosthetics, so we'll work on it. We're still doing our daily stretches, but I want someone else to work on those exercises w/her too, at least weekly.
We've applied for a home care waiver for her, and at this point she's been recommended, and we're waiting for state approval; this would mean she'd have secondary insurance (you can imagine that her primary insurance has taken quite a beating, and there are quite a few things that aren't covered, so this would really help her, as her needs are many, and she'll have these needs indefinitely. The only criteria for this waiver is medical need, and it's the only program available for her, so we're keeping our fingers crossed.)This waiver would allow for PT as long as she needed it, instead of maxing out after a certain amount of visits, as w/regular insurance.
She saw the plastic surgeon this month, and -- tada! -- she's done
w/the pressure garments! He said her skin looked really good,
and he doesn't need to see her again for 6 months.
We saw the immunology doc the same day, and he's going to be working in conjunction
w/a doctor at the NIH (Nat'l Institute of Health, in Baltimore)
who specializes in rare genetic disorders, such as Sam's HPS (her platelet defect),
which caused her albinism; there are different types, and they will be working on
discovering her subtype, as it might be the one that can cause immune problems. It can be a long process, but I'm glad we have a good team working on it. They will be examining her DNA, and possibly running some other tests at some point.
For now, she is remaining on the daily dose of amoxicillin.
She's finishing her TB exposure meds in a few days, so that will be one less medication.
Sam had her first official dentist appt., too, and did really well;
I had her practicing opening her mouth really wide for a week prior,
and she was a champ. The dentist said everything looked normal;
some staining from the antibiotics is there, but that's to be expected.
Otherwise, she's doing well.
She climbs on everything at home, is talking in sentences,
is enjoying preschool, and eats and sleeps well.
She's 3 and a half now, which is hard to believe.
If you ask her where she's from, she yells, "China!!!"
We see the kidney doc next month, but besides that, we're just trying to lay low and relax.
Hope everyone's had a good summer.
Check out some new pics in the gallery.
Thanks,
Jessica
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WOWzer!!
That's so much GOOD News all at once it's hard to digest!!
THANKS, God!!
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I am so glad she is doing better and continues to do better!!!
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