Saturday, March 06, 2010
Avery has had a couple of doctor's appointments this week, and I think it's about time I stop neglecting my blog (and everything else), so here I am!
On Monday morning we went to see Dr Facciani, Avery's nice ophthalmologist. You might remember that at her last appointment I mentioned Avery's septo-optic dysplasia which her old neurosurgeon had deemed too insignificant to mention to us, and it changed almost everything about how the ophthalmologist perceived Avery's eye condition as well as his treatment plan. Previously, surgery was always in Avery's future, but now it's not likely that she'll get it. We don't know for sure yet how much depth perception she has, if any, but what he says now is that it really takes a backseat to her vision, which the surgery is not likely to help. We're still patching, but even that doesn't seem like such a big deal anymore. However, we are getting a reusable fleece and velcro patch which fits over her glasses, which I think will be nice because we won't have to stick it onto her skin anymore. Gabe wasn't convinced we should get one since they're $20, but he's never tried to put one on, and if you've ever tried it you'll know how annoying it is to have your eyelashes brush against it every time you blink! Dr Facciani would like for her to be wearing her glasses more than she has been (she pretty much just wears them at school right now), so we'll be working on that.
Really though, I do know that her problems really could be a lot worse than they are, and not only her vision problems! I know that it's not uncommon for children with similar conditions to suffer severe vision loss, and Avery's vision is pretty good. If all she has to deal with in the long term is glasses and a lack of depth perception we should certainly count ourselves blessed.
Yesterday we drove down to Radford for another appointment with Dr Brown, the physiatrist. I rescheduled this particular appointment several weeks ago because we had made the decision to stop giving Avery valium since we hate it and weren't seeing any positive results, so I wanted to talk to him about our options. We stopped giving her the valium the week that she started wiggling her toes because it seemed like the perfect time to test the practical effectiveness of the drug: if she continued to be able to have some control her feet and toes then it wasn't the drug that gave her the ability. In addition, Lisa (PT) started measuring her range of motion once a week to see if that got worse without the valium. All of these things have pretty much stayed the same, so I still think that it was a good choice to stop the drug. At the appointment yesterday they got similar measurements for her range of motion. Some were a few degrees worse than last time, but some were even a few degrees better. However, they said that the dystonia and clonus were both actually worse than last time. Sooooooo, he is absolutely adamant that Avery needs to be taking something for that. That "something" being either valium or baclofen. Boo. In the end he said "Obviously this is a free country and I can't make you do anything you don't want to do, but I will give you one promise: If we don't do something, I promise you that Avery will start having bigger problems." He says that he realises that the drug option is the lesser of two evils - the greater being not giving her the drug. So I suppose we're going to be moving on to baclofen. :(
I also took with me a list of the various therapies I've been researching. At the beginning of the year we decided that it's time to try something in addition to the traditional therapies we've been doing til this point. It is now 9 months since Avery was in the hospital with her shunt problems, and she still has not gained back the ground that she lost during those two weeks. She can sometimes take 1 or 2 independent steps, and I don't even remember the last time she stood independently for more than 30 seconds or so. Before she was hospitalised last year she was taking 8 or 9 independent steps and standing for up to 7 or 8 minutes. We just feel that she needs something more than what she's getting. We're going to be starting up with the horse riding again soon, although it will technically be therapeutic riding (which is not covered by insurance) rather than hippotherapy (which is covered) because Lisa (PT) was the only one licensed to do it and she's out on maternity leave! (She had her baby girl a couple of weeks ago, and we're so excited for them!) I think it will help to have her on a horse again. I'm also trying to take her to the pool twice a week, which is actually starting to happen now that I'm not feeling quite as terrible as I was. But I seriously think that the pool helps a lot. Last week I took her twice, and she always starts out walking around with the support of 2 noodles (or nurrrrrdles, as she likes to call them), but then we do a game where I stand her up by leaning against the wall and take her noodles and she has to come and get them from me. The water almost comes up to her shoulders, so it gives her some decent invisible support. She says "don't go too far Mom!), so I only go about 4 or 5 feet away, but then once she starts walking I start "accidentally" floating away, and she's been following me further and further, which is exciting! Last time we went she walked all the way from one end of the pool to the other, and about a third of the way back again before she lost her balance (don't worry, I always catch her before she goes under!). That's probably about 25 feet. If this little exercise does nothing else, I think it helps give her confidence in her body and in her ability to control it, and that is very important. I think that she always does a little bit better on solid ground after she's been in the pool.
Anyway, that is what we're doing, but as I said, I've been researching options for what else we can do. I showed my list to Dr Brown and what he said was "Yes, any of those could help with the symptoms and help relax the muscles, but of course they're not going to help with the underlying cause", which of course I knew. I was hoping for some recommendations but oh well. I will go into what I've been researching in another post because I think this has been long enough already.