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 new braces

Well, they're not really that new anymore, but I never posted a picture of them before :) She got these about a month and a half ago, and she's been doing really well with them.
Oh!! And I forgot to mention her biggest news since last time I posted! Avery is potty trained! She was almost done in the summer, but then Brogan was born and she started preschool, and she regressed, but now she's out of diapers except for nighttime. And she's dry every morning, so I should probably put her in underwear to go to bed too, but I'm scared...! But YAY! It's been about 3 or 4 weeks now. She's had a couple of accidents this week, but overall she's been marvelous. Lovely girl.

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!