Today

I've been meaning to take my camera to Avery's weekly PT session so that I can get some photos of what she does there, and I finally remembered to take it this morning! But I only remembered I had it AFTER she'd finished doing stretches, and so I took a couple of pictures, and then promptly forgot I had it again until it was time to go home! Oh well, I tried.
So here are some pictures of Avery trying to stand up with her crutches all by herself.





Avery's PT's name is Lisa, and we just love her so much! She's been working with Avery since she was about 5 or 6 months old, back when she was getting PT through Early Intervention, and then when Lisa left to work for Carilion, we followed her there because we just loved her so much! She does such a fantastic job of pushing Avery and getting so much great work out of her, and yet Avery just adores her, so it's absolutely perfect! For a while after Lisa moved to Carilion, we were getting PT through carilion as well as CRD (early intervention), and the "replacement" PT assigned to us through CRD just didn't have "it", whatever "it" is, and the weekly PT sessions with her were not happy times for Avery. She just cried and cried, and got angry, and the PT was pushing her and trying to make her work, but because she was so unhappy she didn't get nearly as much done, and it left me wanting to slap the PT. So we weren't sad to leave her behind. And it made us even more grateful for Lisa, who knows how to make Avery work hard while still keeping her happy. It makes physical therapy not only happier but also so much more productive.
In the pictures you can see she's wearing her theratogs over the top of her jeans. We just do that for PT - when she goes to school I put them on underneath her clothes. They go on first, even before her underwear - that way she can still use the potty without having to take them off.
We've been worrying about her recently. She has been making so much progress, and I am constantly amazed by her, but I just worry about her developing hips and joints because while she is always progressing in what she's able to do, her muscle tightness and range of motion is getting progressively worse. That can't be good. Every time we've seen her physiatrist over the past year, she's been walking better and better, but having to work harder and harder for it. We've been wondering whether we should just talk to her doctor again about going back onto valium or something at a higher dose, even though it affected her sweet disposition, so that she can get mobile on her feet once and for all before this muscle tightness does more damage to her poor little hips. We already know that her posture and gait will probably never be quite "normal", but I worry that there may be more that we could be doing to prevent further damage. *sigh* Wouldn't it be nice if we could see into the future just enough to know whether all the choices we're making are the absolute best?

Theratogs

I know I've mentioned TheraTogs before, but we've been using them a lot more diligently for the past couple of weeks, so this morning I took a couple of pictures of Avery wearing them so you could see what they look like.

She looks like she's standing on her own here, but she's actually leaning against the table! But her standing balance has been getting better too - her record is 12 seconds!

So, before we got our own set of theratogs, Avery just borrowed some once a week when we went to PT, and she wore them over the top of her clothes. Now that she has her own, I put them on underneath her clothes before she goes to school. It's been great because 2 weeks ago I went into school to show Leslie (her teacher) how Avery wears the theratogs and how to put them on, and we talked about how to gradually build up to her wearing them the whole time she's at school. The PT and I had talked about that before, and she had said that we wouldn't want to go straight into wearing them all day because it would make her sore, since they basically pull and stretch her muscles the whole time she's wearing them. So we'd been putting them on for short periods at home for a while, and the plan was to send her to school wearing them, and then to play it by ear and take them off as soon as they were bothering her. While I was there Avery walked around in her walker with her theratogs on, and they were as amazed by the improvement as I was the first time I saw her wear them! They really do a great job.

So the next day (Friday) I put them on her before the school bus arrived, and when she got home Leslie had written a note in her book saying that she'd asked her if they were bothering her every few minutes or so, and Avery said she was fine until about 1:50pm when she said they hurt and she wanted to take them off. So that was pretty impressive! Almost 3 hours, because I put them on her at about 11am. And almost every day since then she's come home still wearing them!

She really doesn't mind wearing them at all. Some days she complains when I tell her it's time to put them on, but she does that sometimes for her braces, eye patch, and even when I just want to do her hair! So it's not because they're torturous or anything, it's just because she's an opinionated 2 year old :) Of course, that's not to say that they don't get a little uncomfortable sometimes... the way they work is by stretching and pulling, so the straps have to be tight enough to do that, so sometimes when she's been wearing them for a while, they do leaves quite sore-looking marks. And while they do go under her clothes, they go over the top of her braces, so the marks from her braces are also a little more pronounced.

The elastic straps that wrap around her leg have a silicone criss cross paterrn that helps them stay in place, that's what made this pattern. You can also see the outline of her braces on the back of her calf here, and her sock mark.

In this picture you can see why we need new braces. They're not supposed to leave those red marks on her ankle or heel. And I have to say that while it looked particularly sore on this day, and the worst of the red marks didn't fade completely for an hour or so after I took them off, it didn't seem to bother Avery very much. She didn't complain about it at all. She just said "Okay" when I asked her if she wanted to take her braces off when she got home.

Physiatrist appointment

I've been slacking...again. But we've been really busy, and then both my babies got colds. Excuses excuses :) SO there is stuff to catch up on.
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.

To Valium, or Not To Valium.....

Well, on Friday morning Avery and I took the long drive down to Radford to her Physical Medicine Doctor's new office. He used to come to Roanoke twice a month, but apparently there wasn't room at that office for him anymore, so now we have to drive an hour, which I know isn't that big of a deal, but when we've been so blessed to be within a five or ten minute drive from most of her medical appointments, an hour seems like a long time! Especially with gas prices being the way they are. I filled up with gas on Friday morning before we left, and with the appointment in Radford on Friday and then her hippotherapy out in the boonies on Monday, by Monday evening I had clocked almost 200 miles in the minivan... fun times!

But! That's not what I'm here to write about! So this appointment on Friday was with the Dr who had administered Avery's Botox back in November, and we just love him. He is a great doctor, and - just as importantly in my opinion - he's a great guy. He really listens to you and your concerns and observations, and he really takes the time to communicate and get to know you and make sure you completely understand what's going on - and that is a quality which is sadly lacking amongst many of these specialists I've discovered! So we really like him and trust him. Last time we saw him it was back in February, and at that point Avery was still not interested in walking and had to be really pushed to use her walker for even a couple of minutes. It seemed that the botox had begun to wear off, and he told us that we really needed to make sure we were doing her stretches faithfully to avoid having to do more botox and/or valium. Yep, valium - this is not a word which excites us. Anyway, Avery has actually made huge progress since February with regards to walking. We've been working really hard, and when the weather started getting nice I started taking her out for almost daily trips to various parks to help motivate her to walk, and I'd get her to walk to the park from the car. We put on her braces before we leave the house, and then once we get there I find a bench and put on her belt (I just use a soft belt of mine and put it around her chest and hold the end of it so that she's a little bit protected from falling) and put her in her walker, and most days she'll walk all the way to the park. It takes a long time - sometimes it can take almost 45 minutes to walk about 200 feet, especially if it's a nice day and everyone and their dog is out enjoying the weather - she gets distracted a lot! But the important thing is that she's been getting used to walking places. We've taken her to the mall to walk, and we've started getting to church early on Sundays so that she can walk in, and we've just been trying to make her understand that walking should be her primary mode of transportation - not crawling. It's hard work, but she's doing well, although there are of course still days when she just won't do it. And it's only been in the past couple of weeks that she's started to feel motivated to use her walker at home - before that it was like pulling teeth because she didn't understand why she should have to walk at home when she can get everywhere by crawling, which for her is much easier and much faster. So it's been really exciting that recently she's not only begun to be compliant when we ask her to walk at home, but she also occasionally even ASKS to use her walker! So anyway, on Friday they did the usual measurements and exercises to see how she's progressed since her last appointment, and it was pretty interesting. Her adductors (which were the ones which were botoxed) are actually tighter than they were last time, but she's actually doing more functionally. Dr Brown was saying that this must be because of how much we've been pushing and encouraging her, and she has motivation now which she just didn't have before, but he said that it's still really hard work for her, and you can see her fighting that muscle tone with every step she takes. So he wants us to start her on a baby dose of valium. We are very concerned about this, and he says we wouldn't be normal parents if we weren't concerned, but that we should really think about it seriously for her sake because he thinks the benefits would be more far-reaching than those of another round of botox. So we have the prescription sitting on our desk, and are now in the process of researching and weighing pros and cons and hoping and praying that we make the right decision, because of course we want to do the right thing, but of course with a drug like valium there are always risks. Dr Brown says though that he feels certain that it will make Avery's life easier and get her walking sooner because she won't be having to fight against her own muscles the way she does now. So I'm still not sure what we're going to do. But he also wrote a prescription for something called TheraTogs, which she has tried twice with her physical therapist, and they were WONDERFUL! I'm super excited to get those! The first time Lisa (PT) put them on her was the first time I've ever seen Avery walk with her feet pointing out instead of in - it was like a miracle! So I am really excited to get those for her, and maybe we'll wait to see how she does with those before we make a decision about the valium. I don't know. We're going back to see Dr Brown in 3 months. We may need to change the appointment since that's when this baby's due to be born. Actually, he was saying that was another reason that he would choose valium over botox because the botox would require intensive stretching and exercising again to be effective, and since I'm getting less and less able to do that stuff with her as I get bigger and more pregnant (which is true - I've barely been able to pick her up without killing my back recently, and I'm just in pain all the time), but the valium would do it's job whether I stretch her every day or not, basically. So, you know, if anyone's had an experience with any of this, I'd love some opinions....!!