Ack...I was just typing this huge long update and I hit the wrong key
and it just disappeared into nothing! I don't even know what I hit! (All
I was trying to hit was the shift key...) I could just crap
because I'm already suffering from
OMG-we're-leaving-for-three-weeks-and-there's-still-so-much-to-do panic,
but I wanted to update you guys on a few things before we take off for
San Francisco on Saturday, and it's only going to get crazier from here.
First off, we did switch Laurel from Neocate to soy formula, she's been
off it completely for about a month now. She doesn't have any obvious
signs of intolerance (aside from a mysterious episode of vomiting on
July 4th that totally changed our holiday plans), but she seems crankier
and maybe a bit refluxier (I'm sure that's not a word 
).
I sent her ped an e-mail a few hours ago to see if she thinks Laurel's
Prilosec dose should be upped. We're very, very reluctant to go back to
Neocate, not just because of the cost but because if Laurel is ever
going to get off the tube, she's got to learn to deal with whole
proteins. The nutritionist really thought she'd be better off
nutritionally with whole proteins, too.
We've been doing "remedial speech therapy" twice a week for
the last few weeks. Laurel's ability to chew seems to be coming back,
but the most amazing improvement has been in her trunk control! Such a
simple thing - the therapist told us to just hold her by her hips and
let her figure it out for herself from the hips up. She LIKES sitting
like that and can now pull her torso upright from leaning almost
completely forward. She's also been rolling a lot more lately. Since
she's on a roll (no pun intended) gross motor-skill wise, this seems
like a great time to be taking her to the program in San Francisco! (For
the curious, here's a link: http://www.theavalonacademy.org
) I just hope we can get past that cranky thing.
We got some great news yesterday - Laurel's going to be getting her own
laptop! Her OT had really recommended that set-up for her (laptop on her
wheelchair tray instead of pushing the wheelchair up to a desktop), plus
we haven't been able to get her software to install on our flaky desktop
computer (we need to wipe things and start over...but we're afraid, very
afraid 
). But we're pretty tight what with the expenses for the SF trip, so
we've been scrounging around for something cheap or free, and her Uncle
Steve came through for us! (Bob's brother works for a computer
consulting firm.) She'll be getting a laptop that's better than our
desktop! Mommy and Daddy will have to try to keep our grubby little
mitts off it. 
Steve will mail it to us after we get back from SF.
Aside from being cranky, Laurel's mostly been OK, but it's been kind of
a rough month for the rest of us. Bob was dx with walking pneumonia at
the beginning of the month. It seemed like it took well past the end of
the antibiotic course before he felt like anything, although he's doing
better now. I'm having a major tailbone pain flare-up - I had this a few
months ago and finally wound up getting a cortisone shot in it (OWW),
but it's back and worse than ever. Since the shot didn't seem to get to
the root of the problem, the doctor I saw referred me to someone else
who specializes in more of a physical manipulation of the area. Which
led me to literally laying on a table this morning with her finger up my
butt. 
Anyway,
she's been trying to get me fixed up as good as she can before we go (a
5-hour plane ride is sounding like ever so much fun), but she says
tailbone problems are SLOW to get better. She also thought part of my
problem might be calcification - I didn't ask, but I'm guessing that's
not easy to fix.
Oh, one more thing - my sister's up in Pittsburgh this week dealing with
my mom. She's rented a dumpster to try to deal with some of the debris
and was taking Mom to see the optometrist on Monday and the GP today. I
don't expect to hear from Marie before we get to San Francisco, but I've
been thinking about her a lot - she could probably use all the positive
vibes she can get!
Anyway! So much to do, so little time - on top of all the usual stuff
that can't wait three weeks, our office is moving while I'm gone, so I
have to deal with this 11-year accumulation of STUFF! In the next two
days!
I will be so glad
when we're gone, and I can stop worrying about things that have to be
done before we leave!!!
A quick update on my mom...
I really wasn't expecting to post anything else before we left, but
my sister called last night (she was back in the D.C. area, where she
flew into/out of because that's where my nephew lives) and I had to tell
you what she said.
She managed to get Mom to the optometrist on Monday, the GP on
Wednesday, and the audiologist on Thursday (she also filled a 10' x 15'
x 3' dumpster with stuff). The optometrist said that she has cataracts
and will probably need surgery within the next 1 - 1 1/2 years, and also
has macular degeneration. Without glasses, her eyesight has gotten so
bad she can barely make out the "E" on the eye chart! With
glasses, the optometrist says she will still be able to drive during the
day (for now), but not at night. She did have glasses, but they were
way, way off, so no wonder she's stopped reading and has no idea how
dirty her house is.
The GP thinks Mom has congestive heart failure. She had an
echocardiogram and a chest x-ray done, and Marie will be getting the
results of those next Wednesday (she'll call me in SF, and I'll be
seeing her on Friday so we can discuss it further). The GP also had
appts made for a dermatologist (for the nasty black, crusty mole I'd
noticed on her arm when we were up there at the end of June) and a
mammogram, as well as a follow-up about the testing she had ordered,
although I don't hold out that much hope that Mom will keep those appts.
I can take Labor Day on a different day in Sept so we can take her to
some appts, so I probably will. Mom also failed the hearing screening
miserably, which led to the appt with the audiologist. The one piece of
good news is that she has actually been continuing to take a
blood pressure medication. It's only one of the two she was supposed to
take, but the one medication she has been taking is actually not doing a
bad job of controlling her BP and the doc is just going to leave her on
that one.
Marie tells me that normal speech is about 40 db, and Mom's hearing only
starts at 55 db in one ear and 65 db in the other ear. I was shocked and
astounded to hear that the audiologist had actually talked her into
getting hearing aids!!! She will have to have some follow-up appts for
those to have them adjusted, too, so I sure hope she keeps them. We can
at least make sure she gets to one in Sept.
OK, I have to run, but it was a lot of big and some pretty disturbing
(although not 100% surprising) news and I had to share.