Laurel had her follow-up with the orthopedist this morning and I've just been feeling ill...
We got hit with the news that she is going to have to have surgery.
Surgery! We had no idea things had gotten to that point. Her response to
the Botox was so poor that the doc said that casting at this point would
do nothing except damage. (Well, it's a darn good thing I stopped them
from doing it before he saw her then, isn't it? 
) So she is going to have to have tendon lengthening (gastroc recession)
on both legs. It's scheduled for Thursday, March 17 and it's an
outpatient procedure, but we were told she'd go home on Valium because
she'll probably be in pain for about five days afterward. 
She will wear short casts for three weeks afterward and then get new
AFOs (ankle braces).
We are both feeling like bad parents for not being more vigilant about stretching and AFOs - they both made her cry so we didn't push as hard as we should have and now she is paying the consequences. Like I said, I just feel ill...I know it'll probably be OK in the long run but I'm not feeling that way right now.
Ups and downs in a day with Laurel...
Maybe I'll start with the down first. Last night I had a long
conversation with Laurel's PT. She is very upset that Laurel is having
the surgery. She thinks that we didn't try everything we should have
first. Most particularly, she thinks we should have tried a drug called
Baclofen. Baclofen is a drug that reduces spasticity, but when given
orally (there's a pump that can be used to deliver the medicine
directly, but only for bigger kids) it also often makes the kid groggy
and if they have low tone anywhere (as Laurel does in her trunk), it
makes them even floppier. So although we've had the drug mentioned to us
before, I've never had a lot of enthusiasm for the idea and it's never
been really pushed on us. But there she was hammering me on one side
about did the doctor consider Baclofen, did he really inject everywhere
that he could have, wasn't there ANYTHING else that could have been
tried, this wouldn't address the real problem anyway which is in
Laurel's brain, and the effects would only last 6-9 months, and Bob
standing on the other side saying that he didn't want to delay any
longer, but NO, he didn't want to talk to the PT himself. And there I
was in the middle. Anyway, after sleeping on it I'm feeling clarity
again. My understanding of the reason for the surgery is that Laurel's
tendons are physically too short because they didn't grow when the rest
of her did last summer. Baclofen isn't going to help that. The doctor
certainly sounded like he thought he'd done what he could in terms of
injections. And even if the surgery only lasts 6-9 months, the point
(just like with the Botox, which doesn't last either) is to be able to
get her feet flat again so we can refit her for AFOs (and get ones that
fit RIGHT this time - the first set never did) which will hopefully keep
the tendons stretched. I also wrote the folks at NACD (the program
people) this morning, and our evaluator agreed that Baclofen would be a
bad idea for Laurel and said that although they aren't crazy about the
surgery, sometimes it is necessary. So I am feeling better again about
going forward with the surgery, but last night I was sure feeling
battered and confused after I got off the phone with the PT.
Anyway, so the up. It turns out that Laurel loves soy yogurt! She's been
chowing down on it regularly since her babysitter introduced it to her a
couple of weeks ago. Yesterday she ate more than half a cup! Of course,
it took an hour to do that so this doesn't mean we're transitioning to
oral feeds tomorrow. The yogurt enthusiasm seems to be carrying over to
the snacks we've been sending to school, too (which aren't yogurt),
which are mostly not coming back. She's done pretty awfully with oral
feeding for several months though and I've been worried that we really
needed to increase her tube feeds because she had been doing well enough
for a while that we were using the oral feeding to make up the
difference in calories between what we'd been giving her and the
increase she needed as she grew. So it is great to see her back at it.
Also, I had been nervous about soy yogurt because soy was one of the
formulas that Laurel couldn't tolerate, leading her to go on the
Neocate. But she seems to have gotten over that! 
(I did retry her on milk-based stuff a while back and that still didn't
work.) Leading me to wonder if we could switch to something soy-based
(our budget would sure like that), but then again, I know that there are
some issues with soy containing natural estrogens and I don't know if a
long-term soy-based diet is OK for children. (Anyone?) Anyway, the
babysitter talking about how wonderful it's been to feed Laurel yogurt
was a highlight of my day yesterday.
Laurel didn't end up having surgery after all...
Let me say first off, that she's had a virus the last few days. She
had a pretty good fever (102.5) on Sunday and a bit of one Monday and
Tuesday nights. Not a lot of cold symptoms, just a bit Friday and
Saturday. I've been talking to her teacher and it sounds like it's
something that's been going around. I also called the orthopedist's
nurse on Tuesday, and she told me that Laurel would be OK to go as long
as she wasn't seriously congested or running a fever. She hasn't been
congested at all and hasn't run a fever since Tuesday, so we thought we
were good to go. But the anesthesiologist, upon examining her, said that
her chest sounded crackly and that he didn't feel comfortable putting
her under. The orthopedist clearly disagreed, gave her chest a few quick
listens and said that he thought she was fine. But the anesthesiologist
said he was only hearing it in one area of her chest that I think the
ortho could have easily missed in his quick scan, and as he said, he's
listened to thousands of kids' chests and he knows when something
doesn't sound right. So we decided to trust him and reschedule. It could
hardly suck more - we will now be celebrating our 15th wedding
anniversary (March 31) by taking her in for surgery. But the other
option was to wait two more weeks and do it the day before we were
hoping to leave for a respite weekend (something that Cerebral Palsy of
Virginia will hopefully do for us - but we've already decided that if
they don't come through, since we've already lined someone up [Laurel's
former preschool teacher] to stay with her, we will suck up the cost and
go anyway).
Meanwhile, since a crackly chest is not a usual problem for
Laurel, I've gotten her an appt with the ped for 1:50 this afternoon. As
Bob pointed out, if she needs antibiotics we had better get on with it.
I'll let you guys know what the doctor says...
Forgive me, I need to whine...I am so depressed...
It just seems like there is so little "special" time any
more. Before Laurel was born, we used to go away at least overnight and
do something really special for our birthdays. This year, I got four
hours last Sunday (we went to the home show, did a little historic tour
[which would have been more fun if Bob hadn't been getting mad at me for
not reading farther ahead] and had teppan-yaki). I mean, it was nice, I
shouldn't complain, I know some folks don't get anything. It's just such
a shadow of what we used to do. My actual birthday was yesterday; Bob
went to West Virginia for work, got back around 8:30, we dropped the
Escort off to be fixed (turns out to be about $700, blech) and then
quickly sandwiched the cake and presents in between that and what we
thought was going to be Laurel's last bath for three weeks (once she
gets the casts, we won't be able to put her in a bath until they come
off). And I have to say that worry about today cast a pall over the
whole thing.
The anniversary's the same thing. We used to take a weekend trip every
anniversary. For our fifth anniversary, we took a long weekend in
Charleston, SC. For our tenth anniversary, we took a long weekend in
Florida. On that anniversary, during which I was PG, we had fantasized
that we would be able to leave Junior/Juniorette with his/her
grandparents for a few days while we took another nice trip for our
15th. Instead, we're taking Laurel to surgery, and she is too much for
her grandparents (or anyone we know) to take care of for a long weekend.
I know, hopefully we will get to go to VA Beach a couple of weeks
later (although the way this surgery thing is going, I'm half expecting
it to trash that somehow as well). But I had imagined our 15th
anniversary being special, like the fifth and tenth were. Also, for our
tenth anniversary, I got a diamond anniversary band, and we had talked
about my getting a family ring for our 15th, because surely our family
would be complete by then. And here we are and I'm not even pregnant.
And now feeling less hopeful for this cycle, knowing that the end of it
is going to be stressful with the surgery and recovery (we are not
expecting Laurel to deal well with the casts).
I know I shouldn't whine. Things could be worse. I say that all the
time. But, although I love Laurel very much and I feel so guilty for
admitting this, sometimes I miss my old life...
So, the pediatrician said that Laurel's chest was clear as a bell! ARGH! Bob and I both had to admit that although we didn't want to be told that Laurel was really sick, we were hoping to hear we'd done the right thing. Oh, well - we still did the only thing we could reasonably do given the information that was available this morning. I guess the one upside of postponing the surgery is that I know Laurel was still tired from being sick today, so she will hopefully be more rested and in a better position to recover quickly in a couple of weeks. But overall, it pretty much stinks that we are all going to have to go through this again in another two weeks. I wish I knew what's going through Laurel's mind. We didn't want to worry her too far in advance so didn't really talk about it until yesterday; we didn't get much response from her then, but when I was telling her about it again this morning and told her it would probably hurt, she started to cry. I told her she'd get some medicine to help with the pain and we'd be there and every other reassuring thing I could think of and she calmed down, and at the surgery center, I could tell she was nervous but she was pretty brave. But we told her that they decided not to do the surgery because she was too sick and that we'd have to come back for it and I wonder if she's worried now. Makes me want to shop for communication software instead of doing the minutes for the Disability Services Board meeting (I'm back at work now) - Laurel's inability to talk is definitely the thing that drives me craziest. Oh well, I'm rambling...should get the minutes done so I can get home again!
Not feeling as bad today, although this morning I had to write our friends in San Francisco that I had hoped we could visit in June with our frequent flier miles and tell them that we couldn't afford to come, which sucked. Bob, who knew what I was writing, whose decision this was (I know he's right, but I'm desperate enough for a vacation that I would have gone anyway - vacations rate as more of a necessity to me than they do to him), and who isn't half as disappointed as I am, was meanwhile bouncing around chirpily while I was writing it - I could've clocked him. Bob could tell I was depressed yesterday and offered me tomorrow "off", though, so that was very nice of him and I'm planning to take him up on it. Planning to go spend some birthday money and make a necklace, at least.
About the communication software, actually, I don't think we can't go there just yet. First Laurel needs to learn to "scan" (to go through items till she gets to the one she wants, then select it). I had some software (on a free trial, thankfully) that was supposed to teach her to do that, but the reward for doing the task correctly was a not-very-exciting "All right!" and the discouragement was a much-more-appealing (at least from Laurel's standpoint) "Uh-uh-uh!" Although at first, with my verbal prompting, she was mostly doing the task correctly, once she got the "Uh-uh-uh!" she was fascinated by it and kept hitting the switch so she could hear it again. So...I need to go looking for something with better rewards and more annoying discouragements (the software allows for you to record your own, but we've never been able to get the microphone on our computer to work). It was overall not very interesting software, anyway. But ultimately, the goal would be to get her to use something like this: http://www.dynavoxtech.com/index.cgi/18656d070916a5e63cd79818cb2174ec?rm=content&contentid=1000
As you can see, this ain't gonna be cheap (and they have some more advanced stuff that's even more expensive). I'm hoping that once we can prove that Laurel has mastered scanning we might be able to get some letters to support an insurance claim. It'll probably be a fight. But the Dynavox rep I talked to said that they have a video (which I'm supposed to get soon) of a woman using their system who has CP and is going to college! I'm looking forward to seeing it, he said it's really inspiring. Bob said he's not going to get his hopes up and get excited about it, but darn it, I'm the kind of person who needs something to be excited about...
Not again...
We're down another babysitter. I really thought we'd keep this one a
while, she didn't have the money issues that a couple of them did and
she seemed like she was reasonably happy and doing great. But it turns
out that lifting Laurel is hurting her back too much. She was in an
accident last year and the chiropractor had told her she shouldn't lift,
but she was hoping that if she were careful it would be OK, and it
isn't.
She says she'll stay until we find someone else, and that she's going to
talk to a couple of friends at church about the job. I guess if that
fails we will run the ad in the weekly paper again. Although Bob says he
is increasingly wondering whether we even are coming out financially
ahead with my working, and we need to figure it out for sure. I've been
happier at work lately with the change in my supervisor, though, so
quitting now would suck. I'm going to try not to spin into orbit about
it just yet, but there's no way I can keep from being
depressed...there's just no silver lining here. And to think I was in a
pretty good mood when I came home...
We have decided that we are definitely going to try to find another sitter...since jobs in my field in this area are so hard to find and we really only have to tough it out another year and a half before Laurel starts kindergarten and we can put her in the after-school program, which is way, way cheaper than the babysitters (I know that they have it for special-needs kids too...I've seen them advertise for aides for the special-needs kids). It helps to think that there's a light at the end of the tunnel - we've already made it through almost a year and a half since her first babysitter moved. I do hope that we can do it with fewer than another five babysitters, though!!!
We made a difficult decision today regarding Laurel's program...
We have decided to drop out, at least for now. We don't feel that the benefit (or lack thereof) that we have been seeing lately has been worth the $2500-$3000 a year ($2000 for the program, plus travel expenses) we are spending on it. It's been a long time since we got much new as opposed to just switched around a bit (activities drop off, other activities come back, some are always there) - I feel like I could make the programs up myself and am seriously considering it. We are also thinking that maybe we will take the money we'll save and try something new with her this summer, like a feeding clinic or conductive education. (BRIGHT Camp isn't a choice...as near as I can tell BRIGHT's president took his ball and went home.)
We took "vacation status" which means that we could come back within a year without incurring new client fees, but since I don't know that we'll be back, it feels like the end of an era. We've been doing NACD for almost three years now! We have certainly learned a lot, have enjoyed working with the staff and will miss them. Our evaluator was so sweet, when I wrote to tell her we were leaving, she said, "Best of luck with your girl. She certainly is smart and has great parents." But it feels like time to move on...
The surgery itself went without a hitch (aside from the docs running half an hour late). Unlike when she's had surgery on her g-tube, they actually let me go back with her into the OR (I kind of wished we had a camera for Laurel and me in our matching paper hats) and even hold her on my lap while they gave her the laughing gas, so at least I know she went under peacefully. She was also peaceful when we went back to her after she started to wake up, although as she got more awake she got more upset. She liked the balloon they gave her, though (I assume someone donated those - that was really sweet of them). The surgery and recovery actually took less time than they had said, so we went home about as early as we expected to anyway. She has been up and down ever since - her legs are obviously very sensitive, and some muscle spasms she had about 45 minutes ago sent me tearing out of the house to go pick up the Valium and Tylenol with codeine prescriptions we'd dropped off on the way home. But then when I got home she was mostly asleep, and is napping now. I think we could definitely use some speedy recovery prayers and positive thoughts, not to mention some "please tolerate the casts" thoughts (which the doctor dropped on us afterwards are going to be on for four weeks, not three weeks), but at least we've made it this far.