Saturday, March 06, 2010

Updates


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.

17 comments:

Jess said...

Jo, you are just such an incredible mom. I love your blog posts.

Sarah said...

Sounds like you have been very busy with appts aswell and some if it sounds very similar to Violet.

They are also looking into L-Dopa or Baclofen for Violet's Dystonia, but I agree it's a huge decision to add more meds to their list.

Paul Brogan said...

What is the difference between Valium and the other drug, Jose?

Marie G said...

So good to have news from you, Josephine, it has been a while and I have missed you. Glad you are feeling just a little better. This tome pulls at my heartstrings, you are so dedicated and I am sure it will pay off. I suppose it is better not to have promises from Specialists which are not going to come to pass, but it must be difficult for you. Do keep up the wonderful efforts you and Gabe are making. It is quite a challenge. Love to all.

Valerie B said...

Should my novel be published (which, I know, rather depends on me actually sending it away) the first thing we'll do is buy Avery her own horse and paddock. It is so dis-heartening that the awful episode of last summer continues to have such far-reaching effects, so frustrating when such hard-won progress can be wiped out so suddenly. It is interesting that this 'normal' way of life for Avery colours her view of the world in as much as she tells us she wants to be a doctor and she will "run and run to make sick children better." So many people are so looking forward to seeing you all in May and so many people at any Stake gathering ask after her. She is so much loved and cared about by people she doesn't even know.
How exhausting and time-consuming it is to be the parents of a less-abled child, I simply do not know how you cope with all the appointments with not only Avery but lively and energetic Brogan in tow - especially as these first months of your pregnancy have been so horrid for you. Well done for all you do and also for ensuring that Avery has the 'usual' up-bringing disciplines and experiences which by themselves are wearing enough.
Prayers, love and longing as always.

SuzanSayz said...

Wow. That is a lot going on for you Josephine. I sure hope that you can find the best treatments and meds and whatever else needs to be done. And funny as it may sound the one thing that REALLY got my attention is just how horrible it is when your eyelashes touch your glasses. I wouldn't be at all surprised to find that it has been used as a torture method by those unscrupulous enough to think of it. So I am firmly in agreement that Avery should be spared that at all costs.
I hope things go well and that the right solutions make themselves known as quickly as possible. You are in my thoughts and prayers.

Lisa said...

I hope that you will find just the right therapy to catch Avery up to where she was 8 months ago. :) Glad you're feeling better!

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Natalie F said...

Well done. I am equally impressed by your stamina and how fun you still manage to make everything. I will remember our time with you last year. It was lovely to see your wonderful family.

Josephine said...

Avery still talks about "your cousins" on a fairly regular basis!! She will be so excited to see you all again :)

Tony F said...

We're looking forward to seeing you over here soon.

Paul B said...

I love the picture of Avery in her chair. Are the dark glasses part of the treatment?

Josephine said...

They were 3D glasses - they keep on trying to find out whether she has any depth perception.

Paul B said...

Wow. Modern technology, huh. Are these the same glasses they use in Avatar?

Josephine said...

Haha, yes, definitely ;)

Paul B said...

Well, then tell Avery to keep them...

Melissa L said...

Josephine, you are so patient. You are an outstanding mother and Avery was sent to you for a reason. You are such a terrific mother to her. Hang in there. Avery is so lucky to have you and Gabe for parents. She's a wonderful little girl and we love her so much. We love all of you!! I hope things don't get too frustrating.