So, we did go to the doctor today. We did
another set of x-rays and he reiterated the same thing, that it's an
inflammatory reaction. I kept asking him if he was SURE there couldn't
be something else wrong with the soft tissues but no, no, he's seen this
before and he's sure it's an inflammatory reaction. This time he
prescribed something called Neurontin, which is used to treat nerve pain
and interestingly, also used for partial seizures (which mind you, we
haven't seen since the surgery. We called the neuro's assistant to make
sure she was OK with this being added). He said that the foot swelling
was just from disuse (although, it's not like she's using her right foot
either...). It definitely wasn't the satisfaction and answers we were
hoping for. We're supposed to work harder on keeping her in her brace
and to try to gently massage her left leg. He said to go ahead and send
her back to school, screaming and all (she does settle back down after a
while), which we decided to wait to do until Monday in hopes that the
new med actually helps some. And we're supposed to see him again next
week.
Sigh Guess we'll just keep on slogging. Tonight's experiment is
to see how she does in her own bed - she's been sleeping out in the
living room for weeks, at first because we couldn't get the big rental
wheelchair into her room with the back reclined (as it had to be with
the hip cast) and then because it's hurt her so much to move her. But
she's slept so badly the last several nights we decided to to gut out
the carrying to see if she'd do better in her bed. She actually did the
transfer better than we were afraid she would, but she's having trouble
settling. Hoping for sleep for all of us... 
Painwise Laurel is very gradually doing better, I think, and she's
made it not only to school most of the week but back to the afterschool
program a couple of days. But she is back to having an evil cough -
twice today she's choked on mucus and thrown up, and there were a couple
of hours this morning where I couldn't leave her side because I needed
to be there to suction up the mucus when she coughed (which was every
1-2 minutes) so she wouldn't choke on it again. She's doing better now,
so we'll just see how she is by Monday. Likewise with the pain. We're
feeling kind of confused as to where the pain is coming from - some of
it seems like it might actually be coming from her other leg, which she
got into an ugly habit of pulling up while she was in the Spica cast.
She's still doing that, but now it seems like it's pulling on something
or causing spasms. I ran into someone last week who recommended a pain
management specialist, but I haven't sold Bob on the idea yet.
After a day of suctioning mucus and cleaning barf when what I thought
we were going to do today was actually get out and go to the mall and
the home show, I'm feeling tired and cranky myself. But good news - we
are getting a respite weekend Easter weekend! (No, that would not have
been my first choice. But the thing about these hotels that donate the
weekends to Cerebral Palsy of Virginia, they don't donate the good
ones.) Fortunately in some wonderful alignment of stars, 1) the person
who gave us our last respite weekend a couple of years ago (a former
babysitter - she also took care of Laurel when we went to Busch Gardens
last fall, because that's where she had moved to) is moving back to town
just in time and 2) she doesn't mind doing that weekend, as long as she
gets to go to dinner with her grandparents Sunday night. So that's
something to look forward to...it's at what looks to be a really nice
hotel in Virginia Beach.
Today we
actually made it out!
First we went to church. There was an all-ages story at the beginning of
the service, so we attended that, then fortunately for us the
first-graders were doing something outside (usually all of the religious
education classes are inaccessible, an ongoing beef of ours) so we were
able to watch them "dig" for fossils (if Laurel weren't still
hurting so much when she's moved, I'd've put her down in the sand too)
and make a fossil rubbing with them. Then we snagged some lunch and went
to the home show and talked to a couple of contractors - we met one who
specializes in green building and does both remodels and new
construction that I think we're going to have come over and have a look.
Then we went to the mall and bought Bob a new pair of jeans. Then we
came home, fed Laurel and she threw up again. 
She's pretty unhappy this afternoon. But, it was fun while it lasted...
I've been slowly
working on our home office, which, assuming we're still living here by
then and haven't massively remodeled, will be the baby's room. A few
weeks ago I had pictures spread out all over the floor getting them
sorted and boxed; now, for what appears to be the first time since we
moved in in 1994, they're all organized! (I really thought it had just
fallen apart since Laurel was born, but no, clearly I've been
disorganized for a long, long time. 
) Then I pulled a bunch of odds and ends of dried and silk flowers out
of the closet, actually put some in the arrangement I had bought them
for years ago, threw a bunch out, and Freecycled the rest. This week's
accomplishment was taking four boxes of books to the church for their
book sale! Now I think we might actually have shelf space for the books
I brought from Mom's house. No cleaning today, though - right now I'm
going to go get some seeds started. 
Well, I just got us all tickets to see Jimmy Buffett again this year!
I feel really lucky, because it turns out they went on sale back on
March 2 (I subscribe to the update from Pollstar but it's been running
way behind lately - I just got my notice today, where I used to always
get them before the tickets went on sale). Having learned from last
year's experience, I called Nissan Pavilion directly instead of trying
to deal with Ticketmaster, so I was able to sweet-talk them into seating
all three of us together. My biggest relief was that I was still able to
get them at the lawn price - $36 apiece vs. $126 apiece - no way would
that second price have happened for us.
It's on a Thursday night - last Thursday in June - so I think we will
just be forced to take a long weekend. 
(It's about 2 hours away so would make for a short night's sleep
otherwise!)
We're making something like 2 steps of progress and 1 3/4 steps back.
She is still in a lot of pain when we move her - to the point that she's
still wearing dresses, because putting pants on her hurts too much. We
actually wound up dragging her in to the pediatrician last Wednesday
because she woke up at 4:45 AM with a fever and we wanted to make sure
that the cough that she's had since January hadn't turned into anything.
It hadn't (although I wish I knew how to get rid of it - so far we've
tried Rhinocort and upping her Prilosec - the latter in combination with
taking her off Motrin at least stopped the daily barfing we were seeing
for a while), and we discussed her pain as well, but were told again
that recovery is just really slow with some kids.
We did make it out on Saturday with her, to see a cave!
Shenandoah Caverns is about 80% accessible (we've been told since then
that Luray Caverns is accessible too - although "accessible"
in both of these cases means via push chair with a fairly strong person
pushing, the slopes are too steep elsewise). She seemed very
"into" it, was generally quiet and attentive. We also enjoyed
the floats that are on display in a neighboring building (finally
answering the question that my mom always had, "What do they do
with the floats after the Rose Parade?" Answer: they recycle them
to other parades and other floats - and now some of them end up in a
building in Virginia - wish I could have told Mom what I found out),
although Laurel lost patience with Mommy and Daddy reading all the
little signs. But she had been in kind of a crummy mood when we got
there (although she cheered up quickly) and an even crummier mood by the
time we got home, and we realized that riding in the car for that long
made her hurt (it was about an hour and a half each way). So I think it
will be some time before we make it even as far as therapy in Northern
Virginia again.
She is at least going to school and the afterschool program regularly
now, so that is one piece of normality restored to our lives. And
sleeping in her own bed again. But we haven't been able to move back to
the basement family room where we usually hang out, because it hurts her
too much to carry her, so we're still camped out in the living room,
which is really cramped for space. It's definitely pointed up to us that
not using the family room is not something we'd be satisfied with doing
when she gets too big to carry - we either need to make it accessible,
or move.
So that's the report - my three wishes for right now are for Laurel to
stop hurting, for Laurel to stop coughing, and for me to get caught up
at work (I am out of sick leave at this point). And if I had a
bonus wish, it would be for a great idea for what to do with Laurel in
August to drop from the sky, since there's no room in the program we've
been taking her to in San Francisco. But we think we are making slow
progress. We think. At least today, we think that. Who knows what we'll
think tomorrow? 
Update on Laurel...
Well, we took her back to the orthopedist on Thursday (scheduled
revisit) and he cleared her to do anything that doesn't hurt her! That
means she can go back into her stander, the PT can do stretching
exercises, etc. The PT really had me going, because last week she'd
called me and said among other things that the doc had told her that
Laurel couldn't do any of that for a year! I was dubious but still
worried after that conversation, so glad to hear that it wasn't true
(where does she GET this stuff, I wonder - this isn't the first time
I've heard something kind of strange from her
).
Laurel got into this terrible habit of pulling her right leg (the leg
that *wasn't* operated on) way up while she was in the Spica cast and we
can't break her of it, so I'm really glad about the stander and the
stretching exercises, hopefully those will help. The other really bad
habit she's gotten into now though, that I think is more related to the
cough and drainage she's having, is holding her head way back so she's
looking up at the ceiling. We're really starting to think the cough is
allergies - right now I'm trying to be REALLY consistent about giving
her Rhinocort (something I tend to be not so good at), if that doesn't
work then we probably need another talk with the doctor. But WRT to the
head positioning, I wish we could get Laurel back up to the therapist in
NoVA, that is one of the things she's really good at helping Laurel
with. We just weren't really sure that Laurel was up to the trip yet
today though, and unfortunately the therapist will be out of town after
this weekend till the end of the month.
Laurel is doing better with being moved - it still hurts her part
of the time, but not every time. She's been really cranky most evenings,
though, so that's getting pretty old. I think maybe it's partly that her
stamina is still kind of low and maybe the pain is getting worse by
then, and partly that the allergies are worse then. Another argument for
not taking Laurel to the therapist this weekend is so we could give the
house a really good cleaning, maybe that will help with the allergies -
besides, we need to clean for the respite caregiver who's coming next
weekend! We are so looking forward to our respite weekend. We'll
be staying in VA Beach for two nights.
I'm hoping we can do more of the cleaning tomorrow than today, though -
doesn't seem like much of a way to celebrate our 17th wedding
anniversary. We
don't have any big plans today, but I think we're going to go buy a tree
to replace one of the ones we lost last year (our oaks have been dying).
I guess that's kind of a vote for staying in this house - we still need
to get the contractor over to talk about remodeling vs. building new,
another argument for cleaning the house.
We might also do some wine tasting (there are some wineries near the
nursery) if Miss Laurel can be patient and wait for a few minutes. I
tried to get a sitter so we could go out to dinner tonight, but
couldn't. We'll have to hold that thought till next weekend.
So, in summary, we are creeping toward normality here...I think we've
made some movement toward all three of my goals in my last post.
Laurel's pain isn't gone, Laurel's cough isn't gone, and I'm not all
caught up at work, but some progress has been made on all fronts.
Although we'll see how I'm doing with work by the end of the week -
Laurel has spring break next week and I wasn't able to find a sitter, so
it'll be Bob and me juggling all week... 