So...today is Laurel's birthday...
I think I felt more upbeat for her last birthday than I do for this one. Partly because it seems like she's been miserable for forever. Besides the three colds, sinus infection and hand, foot and mouth disease that we've been through in the last couple of months, she has been having the most awful trouble with gas for quite a while now. Bob is worried that there's something wrong with her intestines, I'm worried that it's because she seems to have gotten stiffer and stuff just may not be moving as well. She isn't bending her legs like she used to and almost never kicks anymore. (Last summer, I had seriously considered buying her an adapted tricycle for her birthday, but I don't think she could pedal it now.) Anyway, she has her four-year checkup a week from Monday so we will talk to the doctor about the gas. I'm really worried that there's nothing we can do...we've already tried simethicone, gripe water and a heating pad, and I know lots of other kids with CP have gas problems too and I've never heard of their parents coming up with good answers for it either.
Of course, when she's miserable that makes it hard to do much with her and hard to feel like she's progressing much, too. Although I do think she's gotten better in some areas. We're pretty sure her vision has improved some more. Her babysitter reported the other day that she tracked a wasp outside the window a couple of times, which I know is something she couldn't have done in the past. She is doing a much better job of looking at things like books when we show them to her (she used to listen to stories but not look; we bought her a couple of pop-up books for her birthday/Christmas because we think she's at the point now where she will enjoy them). Her use of her arms has improved some more as well. She's discovered that she can stop her Mickey lightchaser (this is a toy that has three lights at the end of tubes sticking out of Mickey's hat, which spins when you push a button on Mickey's side) by sticking her hand in it (doesn't hurt, I've tried it) and she thinks that's pretty cool. At school, since she doesn't use her arms there as well as she does at home (and even at home there's a limited window when she can use them before she gets overexcited and too stiff) they have been working with her on a head switch, and they're very excited about how well she is doing with it. And although her eating isn't quite as good as it was over the summer when Danielle was her sitter, it's still better than it was last year at this time. She definitely enjoys eating more than she did then. Also, she still seems to understand lots of things that we say to her.
Oh, and one more piece of good news - we have NOT seen a seizure or even anything vaguely seizure-like since a couple of days after we upped her seizure med again. Although she's been awfully tired. But it's really hard to say whether that's a side-effect of the Depakene or the various illnesses - we're still working our way through the third cold.
Anyway, we are doing what we can to celebrate her birthday despite her not feeling good. She didn't go into school right away this morning because the gas pain was too bad, but Bob took her in later and when I got there with the cupcakes at noon (Bob was in a funk and also kind of sick and decided not to go), they said she'd been having a good day. Although soon after I got there, she started crying - which seems to happen every time I go to school! The teacher thinks maybe it's confusing for her (she did keep looking back and forth between me and the teacher like "what the heck"). Me, I wonder if it's because she wants me to pick her up. We did get her to calm down for a while and got some pictures. She liked when the kids sang "Happy Birthday" to her! But then got wound up again toward the end. This evening we'll have more cupcakes, and presents. Hopefully this weekend she'll be up to doing something fun, like going to the children's museum (we've never actually taken her but her teacher from last year took her and said she really enjoyed it).
So, that's the report from Laurel's birthday. I think if Laurel ever gets to feeling better, Bob and I will be feeling better too, but right now we're a little sad (that might be an understatement for Bob).
Also, I've sorted out pictures from the last year to post on her website, just need to actually do it! Hopefully by the end of the weekend.
I had a really disturbing conversation with Bob last night...
First off, sorry I haven't been around! Our babysitter was off for
one reason or another every day last week so we were doing the
babysitter shuffle (i.e. taking turns with Laurel and working strange
hours to make up for it). Then my mom and sister came, and then I came
down with a nasty cold. Still home with the cold today, actually, and
starting to freak because I need to have the second draft of a plan
posted and a 10-minute presentation prepared on it by Thursday. I have
some stuff here to work on it so am going to see what I can do on it
today, but I need to get this off my chest first.
As has been happening all too often lately, Laurel was up a long time
last night, presumably with gas. I had her from I think about 3:30-4:00
and then Bob came in and said, "Let me take her," and since
I'm sick, I said "Thank you" and went back to bed. He didn't
make it back to bed until 5:30. At which point he said, "This is
killing me. My heart's been skipping every third beat and it's just been
getting worse and worse the last several weeks. I'm going to die from
this. She's killing me and I can't love her anymore." We talked
some more and he's obviously very depressed over how high her tone has
been and how much gas she has been having (we've been trying everything
we can think of for the gas - simethicone, gripe water, a warm pad - and
her ped doesn't have any other ideas). She had a major growth spurt
recently and I think both of these things started happening after that.
For some reason CP often works that way. Of course, I'm worried too,
although I haven't given up all hope of it getting better - for one
thing, her tone has improved spontaneously before, and for another,
we're going to be doing some things (Botox and casting - I'm VERY
reluctant on the Botox because I've heard bad things about effects of
repeated use, but I've finally been ground down into agreeing to do it
once) for the tone in her ankles, which has gotten exponentially worse.
Her PT believes that's causing a ripple effect with the rest of her
body. But Bob seems to have given up hope that it will ever get any
better. He said that he wished we'd never had her. He said we should
kill her. I'm pretty sure he didn't really mean that but of
course I'm bothered. I told him I thought he needed to see someone to
help him cope with the situation and he said, "The only way I could
cope better with the situation is if it didn't exist." I also
suggested that he see a doctor for his heart, but he said, "They'll
just tell me I need to get more rest." (He's had the problem with
his heart skipping beats for years and years - up to this point it's
been pretty manageable as long as he didn't drink too much caffeine.)
I don't know what the heck to do. I can't make him do anything,
of course. But between Laurel being so miserable all the time, this
deadline looming at work, and now this, I'm about to jump out a window
myself. Or at least crawl into a hole and pull it in after me. Sometimes
I just wish I could run away, and this is definitely one of those times.
Thanks for letting me vent... 