Options

This morning at PT I was talking to Avery's therapist about different doctors and treatment options and all of that, because sometimes (okay, a lot of times) I worry that I'm missing something, or that there are more things I could and should be doing for Avery. I've been thinking about it a lot. A lot of my blog buddies seem to have taken the stem cell infusion route, and to be honest, since Avery's diagnosis didn't occur until two weeks before she was born, this was something I hadn't heard anything about when she was born, so we never kept her cord blood, so that wasn't an option for her at the time. I felt bad about this, because although I know the research is limited with the whole stem cell thing, I do wish we would have known about it at the time, because even if it hadn't done anything to help her, it certainly wouldn't have done any harm! I've stopped feeling bad about this though, because as I said, it couldn't be helped - in all the research I did during the short time between Avery's diagnosis and birth, the whole stem cell thing never came up, so I didn't know about it, and I've come to accept that if I was meant to do it, I would have been inspired in my research to find information about it. For us, it apparently wasn't meant to be.
Anyway. The reason I've been thinking about this recently is that Avery isn't currently seeing a neurologist. We're seeing her neurosurgeon on Thursday of this week, which I'm sort of excited about because we haven't seen him for almost a year, which is the longest we've ever gone! But Avery used to see a developmental neurologist until he moved to Idaho, and then we started seeing Dr Brown instead who is a wonderful physical medicine doctor. We love him, but I worry that we should be seeing someone else as well as him...I don't know. I was asking Lisa (PT) about what she thought, since she deals with other kids like Avery and knows what sorts of doctors they all see, etc. We were talking a little about the orthopedic doctor we took Avery to almost 2 years ago - he was actually the doctor who officially diagnosed Avery with cerebral palsy. We got her original prescription for her walker from him, but he wouldn't write a prescription for AFOs for her because he didn't believe that braces actually helped. I'm not sure what he would have had us do instead. Lisa was saying that there is now another pediatric orthopedist in town, but that she's pretty sure that he would never prescribe AFOs either. She was saying that she's also quite certain that if we took Avery to an orthopedic surgeon right now, they would recommend some kind of surgery, such as tendon lengthening. She says that as a physical therapist she has mixed feeling about tendon lengthening. *sigh* why can't everything be black and white?? I want to do what is best for my little girl, but how am I supposed to know that what I'm doing is what's best, and not just what one person thinks might be best?
Anyway. Sorry - a rambling sort of post, I'm just in a little bit of a quiet panic because I worry that I'm not doing everything Avery needs me to do.
I do remember that back before Avery got botox in her adductors back in November 2007, Dr Brown seemed to think that she would learn to walk independently during the several months of the botox's effectiveness, and that once that happened she would be using those muscles so well that she wouldn't need to get botox again. Obviously that didn't happen, and her poor little muscles just keep on getting tighter and her tone keeps on getting worse, even though she's working harder and harder, so of course I worry about her. She's having to fight against her body more and more as time goes by, but shouldn't it surely be getting easier?! One of the evidences of this is the fact that her constipation has been getting progressively worse and harder to manage. It's directly related to the muscle tone and tightness of her legs and the other muscles that are affected by her CP, because of course this kind of constipation (neurogenic constipation - I only recently learnt the name for it!) is a reslut of the intestinal muscles behaving in the same way as other muscles affected by CP. We used to be able to control it with an abundance of prunes/flaxseed/apple juice/water in her diet, but it's been getting worse and worse and we have to give her miralax now. I hate having to medicate her in any way, but we just can't control the problem without it anymore. Dr Brown prescribed colace, but have you ever tasted that stuff?? It's foul, and Avery screamed every time I tried to give it to her, and half of it dribbled out of her mouth in her distress, and even after all that she still wasn't going any more often, and even when she did there was still blood every time I wiped. I feel so bad for her. *sigh* What to do?

The Walking Game

Avery would like to introduce you to a little game Daddy came up with called The Walking Game. She LOVES it and will ask to play it on a regular basis. Of course, if you ask her how she plays the walking game, she would probably tell you that you play it by eating chocolate, but there is more to it than that :) And this morning's game was actually played with pieces of granola bar, not chocolate!
Here's how you play:

Avery's AFOs

I've been meaning to get some pictures of Avery's braces on here for a while, so here they are finally! She's had this particular pair for about 6 months now, and as you can see, she's starting to grow out of them. Last time we went to see Dr Brown he wrote a prescription to have them adjusted or replaced, but she's been complaining about them quite a bit recently, so I have a feeling we'll need to get a new pair and not just have these adjusted. We'll see, we have an appointment at the orthotics place on Friday morning.
Avery can now get up into this chair all by herself!!!! She's a pro! She just started doing it about 3 weeks ago - before that she needed a lot of help getting into these little chairs. For a few weeks before she finaly figured it out, she was doing a lot of playing around on the stairs - climbing up one step, turning around, sitting down, climbing up to the next step, sitting down - so I think that helped her figure out how to do it and then she was ready to try it with the much smaller space of a child's chair. They also sit in little chairs every day at school, so that probably was part of it too. So proud of her! Of course, the one time she tried to get out of it properly by turning around and getting down, the chair fell over and she banged her head on the wall, so she doesn't do that anymore - she prefers instead to lean forward with her arms outstretched until the chair tips forward and she lands on her hands and knees :)

You can also see she's wearing her eye patch in this photo. It used to be a battle of wills every time we put her eye patch on, but for the past couple of months she has been an absolute angel and doesn't even complain about it! I think it's because she gets to pick out a sticker to put on the patch every day, and she thinks that is pretty cool. Also, recently when she's been choosing her sticker, she's been looking forward to showing it to Miss Leslie when she gets to school! For the past week she's picked a football (soccer ball), which she calls a baseball, almost every day, and has just been so excited to show it to Miss Leslie! It's quite cute! She wears it for two hours every day, and then she gets to take it off herself, and she likes to peel off the sticker and stick it on her shirt. I'm amazed at how compliant she is - I would hate to wear one of those things every day. She's such a sweet girl.




Avery loves her little brother! She's so gentle with him and sweet. It's funny too, because everytime she sees me changing his dirty diaper, she comes over and says "He pooped!! Oh! Well done Brogan! Good job!! Yay!!" and she claps her hands and cheers! I think that because she's always struggled with constipation, she thinks it must be just as exciting for everyone else when they poop :) Speaking of constipation though, Avery has been doing marvelously recently!! For the past two weeks I haven't even had to give her any miralax, and she's been going without any fuss at all almost every day! Maybe we've finally overcome the contipation hurdle? I don't know, but I certainly hope so! I think that because she's on her feet and walking around so much every day at school, it's finally got her bowels active and moving the way they should. Exciting times!

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.

Preschool and valium

Avery started preschool last week!! I can't believe it! But so far it's going great, and she loves it! Once she's settled in properly (in about a month) they'll do the PT evaluation to see what she needs specifically as far as physical therapy goes, but until then there are also a whole bunch of other goals on her individualised education plan (IEP). What a great program. There are 8 kids in her class, 6 boys and 2 girls. The other girl's name is Ava, so they have an Avery and an Ava! The teacher is really great, and then there are also two paraprofessionals in the classroom with them. Today they did some fingerpainting. Avery has an issue with getting her hands dirty, so I was pleased to hear that she didn't get too bothered by the paint on her hands, and that once they started she actually got into it a little bit, so that's great.

At the end of her first day
Waiting for the bus
Still waiting

An update on the valium front: We started giving her 0.3mg of valium once a day before bed. The first week she seemed to be more irritable and sleepy and stuff, but then that sort of went away, but there was no noticeable difference in her muscle tone. So we upped the dosage to 0.3mg twice a day (before nap and before bed), and now it does seem to be making a difference. It's a lot easier to put her braces on even, because her ankles are a lot more flexible. Since she started taking it she's also made some exciting progress with the standing and walking. She will now attempt to take a step or two before she falls over when she balances independently, and on top of that she can also stand independently for longer than before - sometimes for almost 10 seconds! So that's exciting, and I don't know how much of that has to do with the valium, if anything, but as I said, the valium is definitely making her muscles more relaxed, which is great. We see Dr Brown again next week so we;ll talk to him about the dosage and how long she might be taking it, etc, because we still only want to give it to her for as short a time as possible.