Avery had an appointment with Dr Brown, her physiatrist, who happens to be my favourite of all her doctors. He's just so nice, and he's communicative, which is so important. Plus, he was the first one to tell us with confidence that Avery will eventually walk independently, which may have softened my heart toward him a little!! :D Anyway, we were supposed to see him in August, but I happened to go into labour on the morning of the appointment, so we had to cancel ;)
They do all sorts of measurements of Avery's range of motion and reflexes and all of that good stuff whenever we go, and it's been interesting the last couple of times that while Avery has improved in her walking and mobility immensely, her muscle tone and range of motion has barely improved, and in some areas has actually decreased. Dr Brown says that what it means is that she is fighting her muscle tone with every step she takes, and that it's pure determination on her part that she's doing so well. That's why he prescribed the valium in the first place - to make it easier for her to move without having to fight her own body so much. They were very happy with her progress though, and as always she was an absolute joy and seemed to make everyone's day! Our appointment wasn't until 1pm, but it turned ou that we were his last appointment of the day, and we were there for 2 hours, and Avery had a great time showing off her mad skills to them :)
Here is the rehab plan Dr Brown gave us this time:
Maybe we can talk daddy into buying a pony (haha), but if he doesn't go for that a peanut will work (The really big ones that you can sit on). Hippotherapy would really help her, the more the better. AFOs are small but some trouble donning the left. They need to be adjusted or replaced.
I think it is worthwhile to try and gently slowly carefully increase the Valium as we discussed: the ladder is first to go to 0.3mg in the am and 0.6mg in the pm, wait 3-7 days, then go to 0.6mg twice a day. If she has any problems, you can always go back down and you can definitely stop at a certain point (if she is tolerating it) and just stay there (like you could climb or use a ladder). From the above point you can go to 0.6mg in the am and 1mg at night, but I wouldn't go past 1mg TWICE DAILY for now.
Laura [the PT who does all the measurements etc, who also happens to be a friend of Gabe's from his days at the Rescue Squad] will discuss the adjustment of how we wear the theratogs that really seemed to help today.
Disposition: Return to office in 3 months.
So I am now even more sure that hippotherapy is more than worth our time and effort! I mean, Dr Brown couldn't stress enough how much good it would do Avery. He said that in an ideal world he'd want to see her on a horse every day.
Avery has been complaining a little bit about her braces recently - we have an appointment at the orthotics place next week and a prescription from Dr Brown to have them adjusted or replaced.
Gabe and I are in different places over the valium issue. I increased the dosage as Dr Brown suggested to 0.6mg in the evening and 0.3mg in the morning, and Avery was irritable for more than a week after that. In my mind, I was still willing to give it another chance though because that week had also been a stressful one for us with some uncertainty with our house, and having family come visit over the weekend, so I decided to give the higher dosage another "normal" week before going back down. Anyway, Gabe was putting her to bed one night last week, and he called down and asked if we were still giving her 0.6mg, to which I replied, "Yes, I'm giving it til the end of the week", meaning I was giving the higher dosage til the end of the week and if she was still irritable I would go back down to the lower dosage. He said though that he's ready to stop giving her any valium at all though because he says he doesn't see that it's doing her any good. Hmmm.
Here's the thing. Avery is making progress. It's hard to know what exactly is responsible for the progress she's been making, because in the last few months she has started hippotherapy, started taking valium, started preschool, and continued with her weekly physical therapy. And in addition to that, she's also just getting older and more independent, so it's just impossible to credit her progress to any solitary one of those things. It also means that, while she has made progress since starting the valium, we don't really know for sure that she's made any more progress than she would have if she hadn't been taking it. Do we? Anyway, the way I feel about it is this: we decided it was worth trying, and since what's she's taking right now is an infant's dose, we should definitely continue to give it a chance to work on a slightly higher but still very conservative dose. Gabe seems to think more along the lines that since this tiny dosage doesn't really seem to be doing much, we should just stop giving it to her.
*sigh* It seems that more often than not, the right choice isn't clear.
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