OMG, OMG, I am SOOO grossed out...I was getting ready to put a load
of clothes in the dryer and I noticed something sticking out from under
the lint screen guard. My first take on it was that it was a piece of
rubber gasket or something that was coming out of place and I shouldn't
mess with it, I'd probably make it worse. But of course, ignoring that
piece of self-advice, I pulled on it and it came away easily. My second
take on it was that it was a rubber lizard. It's actually not
unreasonable for me to expect there to be a rubber lizard, a couple of
loads ago I washed some clothes I got for Laurel from a consignment sale
and there was, in fact, a little rubber lizard in the dryer - presumably
left in some little girl's pocket. So I thought this was another one.
But no, closer inspection of the object in my hand revealed that there
were some guts sticking out of its abdomen. Ewww, ewww, ewww, ewww,
ewwwwwwwwww! I dropped the lizard and ran to wash my hands and get
tissues and a flashlight and a mirror to see if there was any more
lizard in the dryer. And to stand in the bathroom for about a minute
shivering and going "Ewww, ewww, ewww." I finally got it
together, determined that there was NOT in fact any more lizard in the
dryer that I could see, and disposed of said lizard. No, I do not know
how a lizard got in my dryer. We do sometimes have them outside, where
they belong. And I'm not grossed out by the live ones...I really don't
consider myself a person who grosses out easily. But EWWWWWWWW...
Waiting for the nurse to call back...think we're heading for the ER.
Laurel's been breathing very fast and her temp's up - was 100.8 under
her arm, now with Tylenol down to about 100, but that didn't help the
breathing as the doctor had hoped (she's taking about 40 breaths a
minute). We were instructed to call back if it was still over 30, so did
- after an incredibly aggravating sequence where I tried to call the
doctor's office # (which is supposed to connect to the answering service
after a long message) like 8 times and just got greeted with silence
after 1-2 rings! (It had been working fine the first time.) I even tried
waiting for a couple of minutes, but nothing ever happened. Then I
tracked down the answering service, but she called the doctor's number,
said it worked for her, and that I had to keep trying it, she couldn't
connect me. B!%CH!!! 
Finally after another four or five tries we got through, so now I'm just
waiting for the return call... 
Welp, they couldn't find anything! By the time we got to the
hospital, the fever was gone, but she was still breathing really fast
and her heartrate was up. Nevertheless, the chest x-rays were clear, as
were her ears, and there was no sign of a UTI or anything else that they
could see. So, glad we're spending the night in our own beds, but
scratching our heads as to what THAT was all about... 
*Sigh* Laurel woke up screaming at 6:30 and is back to a temp of
100.8 under her arm...I'm thinking we should take her in to the doctor
and have them do a white blood cell count to make sure there isn't an
infection somewhere that we're missing...she just doesn't have any cold
symptoms (other than the ongoing cough) or anything that I can see that
would explain what's going on...
[Posted by Bob]
Laurel's doing better today. We took her to her pediatrician
yesterday afternoon and she sent us off for a whole bunch of blood work
(she's seeing her neurologist next week and so we threw in a check on
the level of one of her meds and her blood ammonia level and we also had
some pre-puberty hormone tests because we've been concerned about some
things we've been seeing plus all of the tests related to seeing what
might be making her sick).
All of the blood work has come back normal so far (still waiting on a
few of those pre-puberty tests) so the good news is that whatever has
made her sick is probably nothing serious. There was apparently
something in her urine test from the ER visit that could have meant her
liver was acting up and so we were concerned she'd gotten too much Tylenol
lately, but that's not the case. So, good news.
The doc suggested when she called us with the lab work that we give her
some Benadryl. Not for its normal use, but because it slows down the
intestines (peristalsis?) and that if she's having some GI pain that
that can help. Well, about 15 minutes after getting that she was
sleeping. Most of last night she was either asleep or up briefly with
some pain - except for some time around 10 pm when the pain lasted
longer. During a calmer moment we worked with her with a switch we'd
programmed to say "Yes" and we tried to narrow down where it
was hurting. She said her abdomen was what was hurting (assuming we
weren't projecting our own beliefs that that was where the problem was)
and I really could feel a lot of gas down there.
So, she went to bed around 12:30 AM and slept until 6:45 AM and she's
been really calm this morning and so far no sign of the fever. She had
an appointment to get her feeding tube button exchanged for a new one
this morning at 9 am. That's quick, but quite traumatic (it probably
lasts just a couple of minutes or less). She was a real trooper and
calmed down within 5 minutes, also a good sign she's feeling better.
Then, on the way home she threw up! Probably just because of the button
getting changed. She's sleeping again and still seems really calm.
Laurel's still not too happy, and was running a fever again this
morning, but after yet another call to the doctor she has convinced me
we should go on our respite weekend anyway - so we're leaving soon,
basically as soon as I'm ready...I'm going to be a lot more nervous than
I've been in the past when we've done this... 
[Posted by Bob]
Laurel's school yesterday...
Laurel has been sick for a week. Rochelle has had a lot of
must-attend meetings and then several days of a conference so staying
home with sick Laurel is my job right now.
But, Laurel last threw up on Monday and last had a fever on Sunday so I
sent her to school yesterday.
At 9 AM (one hour later), the nurse from school calls me to tell me that
Laurel's aide reported that Laurel's face was flushed and Laurel was
sweaty. The nurse said her temp was normal, though. So I asked "Does
she need to come home?" and the nurse said, "No, not from a
fever standpoint." Then the phone was transferred to the special
ed. teacher responsible for Laurel who got to the point. The
kindergarten was going on a field trip that day and they were concerned
that Laurel was still sick and that once they got there they'd be stuck
if she got sick there. "Well, what do you think." "Well,
she does looked flushed and [the aide] says she never sweats ..."
"So, should she just stay there at school and skip the field trip?"
"Well, there's not a lot for her to do here at school - well,
there's really nothing much for her to do here." "Um, would
you just like me to come get her?" "Yes, we think that would
be best."
I hate it when people don't just get to the point. Grrr.
And of course, Laurel was fine the rest of the day and I had to spend
one more unplanned vacation day taking care of Laurel. What would they
do if any child got sick on one of those field trips? Why is that any
different with Laurel? Don't they have a cell phone? They could call me
at any point and I could come gotten her from any location in town.
Still, the trip was to a local grocery store and then a restaurant.
Neither of which are any of Laurel's favorite locations so she was
probably happier not going. But it's been pretty stressful not being
able to work for most of the last week.
Well, CRAP - we are having another crummy weekend here...
Laurel threw up in the middle of the night Friday night, and
yesterday she was vomiting and running a fever. Today she was still
pretty fussy but no vomiting and only a low-grade fever (which might
have been explained by the crying) so after much dithering we decided to
go ahead with our plan to go out to a local festival and then to dinner.
Only to have the babysitter not show up! This is the one who was our
last regular paid sitter/Laurel's first aide at the afterschool program
and although she's bad about calling off, if she doesn't she's usually
right on time if not a little early, so by 3:10 (10 minutes late) we
figured she'd forgotten. Sure enough, she had - she's running with the
EMS squad tonight so we are out of luck.
Meanwhile, Laurel hasn't been happy since she first came down with that
bug April 3, so nearly 3 weeks later we are ground down. The respite
weekend was helpful but it already feels like a million years ago. We've
talked to various doctors and therapists (and even were forced to schlep
back into the ortho by Laurel's PT, although we were pretty convinced it
wasn't her hip, and it wasn't) and the possibilities are 1) slightly
elevated ammonia level (we dropped her valproic acid dosage a little
starting Friday, just in case) 2) she needs lactobacillus after her
first stomach bug (as the pediatrician had predicted, the bug she came
down with April 3 turned into a stomach bug over the respite weekend -
Bob is arguing this one, though, he says it constipates her) 3) it's all
positional - she got it into her head for some reason that she needs to
tilt her head way back, but of course that's not comfortable, but we're
having trouble making her stop - she seems to think she needs to do it
in order to breathe. Anyway, we're wiped out from whining and wiped out
from guessing. And it just SUCKS that we're not going out tonight. 
Ya try to do something for your sanity and you can't even...
*Sigh* - I guess it's just as well we didn't go - Laurel threw up
again.
We started off well today - when Bob left for work this morning, she
was sitting calmly next to me on the couch. Couldn't interest her in
doing anything else (I kept asking her if she wanted to do something
else and if she'd looked away any harder her head would have twisted
off), but except for what seemed like occasional spasms of pain
(intestinal, I'd guess) she seemed pretty good. But over the course of
the day her nasty cough (which she'd had for months but it had finally
mostly disappeared - I think upping her dose of Rhinocort did the trick)
came back, as did her fever. And then she threw up again this evening.
So she'll be staying home again tomorrow, and it'll be Bob's turn to
stay with her. I sure hope she turns the corner tomorrow... 
In non-Laurel-being-sick news, I'm trying to work my way through some
of the things I had resolved to do this year - reapply for a Medicaid
waiver for Laurel, decide what to do about accessibility for our house
(remodel or move) - and one thing I hadn't planned on, getting our front
lawn fixed (thanks to our wonderful cable company). The staff from our
county Department of Social Services came out on Friday and I think it
went well, so we're through the first hurdle for the Medicaid waiver
(last time we made it through the first hurdle too, but then got hung
when we had to work with an agency and the agency's staff couldn't do
tube feedings - since then the waiver has changed and we can hire our
own help). If we get it, it will pay for most of Laurel's care over the
summer, 720(!) hours of respite, and our insurance co-pays (we've spent
over $2,000 in co-pays so far this year, although some of that was for
me). It would certainly be a big help!
I still haven't figured out what we're doing in August since we're not
going to San Francisco. Actually, I know what I'd like to do - go
to Yellowstone. I've always wanted to go there (it's way high on my list
of places to see before I die), and it's supposed to be great for
handicapped accessibility. But I've been putting off making reservations
because I want to make sure we get to the bottom of what's bothering
Laurel. I worry I'll wait too long and won't be able to get reservations
(what I should do is go ahead and reserve a hotel, anyway, since
those can usually be canceled for free), but I just haven't been able to
get my head into it without knowing whether or not Laurel will really be
up for the travel. I think I am also having some guilt about spending
the money - Bob has been pushing an East Coast driving trip, and I feel
like I should be trying harder to find an alternative therapy.
Meanwhile, I think I'm going to take Bob up on his offer for me to go to
a weekend program on wildflowers. I went for a couple of Mother's
Days and then didn't for the last couple since it's kind of spendy, but
I could sure use the break...
[Posted by Bob]
Laurel did go to school this morning. She was pretty good yesterday
with me at home with her. No fever and no barfing although she was
slightly worse (crankier) by the end of the day. She woke up at about
4:30 AM pretty sweaty and with a slight fever (99.6 under her arm). She
went back to sleep around 5:30. When I work her at 6:30 to get ready for
school she was okay and so we sent her to school - which I feel somewhat
guilty about because she did have a slight fever over night, but I had
to be in West Virginia today (where I am right now, driving back in
about 45 minutes) and Rochelle had work that she had to do today and the
folks at school know how to find us when they need us. As of a 2:30 PM
e-mail from Rochelle today, Laurel was still in school then, so that's
good.
Hopefully she'll continue to feel better and we'll start to see more of
her normal personality.
Is there anything that can be done for an ingrown toenail? Laurel has a nasty one - actually, I'm not sure what happened, maybe the toenail broke off? It's a lot shorter than the other big toenail and has a nasty crack way into the quick (parallel to the top of the nail and at least 1/4" down, running from the right side of the nail) and is ingrown on that side. Her toe's all red and swollen-looking. Does anyone have experience with this - is there anything that either we or the doctor can do for her?