Sep 16, 2014

The One with the 23 Month Old Who Wears Ankles Braces

Doesn't this story feel never-ending? Wouldn't it be so much simpler if Addison had walked by when she was supposed to and never regressed? Well, of course it would have been but that's just not how it happened for us. Getting her to the point she is today has been an ongoing thing and a constant battle, but we carry on and have done everything we could to get her the help she needed to get up and moving (and soon talking). This journey has been anything but easy but recently I saw this that rang true for me.


Sometimes I watch Addison walk around and I just want to cry. We are finally there. She is walking. She is healthy. She is doing so good.

So as of August 6, we are officially calling our daughter, our beautiful beautiful daughter, a walker. She can walk. Heck, she can almost run. She has really come so far.

Our story isn't quite over. With her regression, she stopped talking. And we can't get her to talk too much now. We have been teaching her sign language which she is picking up on quickly. She has also found other ways to communicate with me which cuts way down on the meltdowns because I can figure out what she wants or is trying to tell me. It makes the days much more manageable. But now we are working with Infant Toddler Services to get her talking. She can say a few words. The one I hear the most: Mickey. She loves Mickey Mouse and she knows that I have an app on my computer where she can watch him. So that's something at least. But we are getting there. Slowly but it's coming along.

We went back and saw her neurologist at the beginning of August to follow-up on her MRI. We already knew the results because I wanted to know as soon as possible. There was spot but it wasn't clear if that was the cause or not. I was really worried about going to this follow-up appointment because I was worried about having to do another MRI. I was ready to fight against it. I knew there would be reasons to get another one and I also knew that I didn't want to put her through that again. I didn't want to put myself through that again. The neurologist showed us the spot and told us that it was really small and it wasn't clear if it was temporary (basically where she would grow out of it) or if it was permanent. His best guess was that it was temporary because where it was located it would affect her peripheral vision but from what he could tell she didn't have any issues. We have to go back in six months to follow up and make sure that wasn't the case. Then he started talking about a follow-up. The radiologist who read the MRI didn't think it was necessary to do a follow-up but then he said the worst word in the world BUT. He then went on to explain that he was much more cautious and finally he said that he didn't think it was necessary to do a follow-up MRI. However if she regressed at all or showed any other stage neurological ticks or the like then we were to call and we would get in for an emergency MRI basically.

I could instantly feel my entire body relax. We were past the worst. My little girl wouldn't have to go through that again. I'm nothing but confident that the regression is completely behind us. Of course I still watch her closely just to make sure but there were no MRIs in our future.

So now we were cleared on neurology. We were able to get her up and walking. But we had another doctor still to see. This time it was about her ankles.

When we were trying to figure out why she wasn't walking, my mom noticed that Addison was almost standing on her ankles. Definitely strange. Over time I kept pushing the issue with everyone I saw about her and we were referred to a orthopedic doctor who would help fix that problem. By this point she was basically walking so it wasn't the cause her not walking. But we learned that if we didn't correct it she would have feet problem for the rest of her life. Her feet wouldn't develop the way they were supposed to and she would have really bad arches. I definitely didn't want that problem for her. Plus, she was probably not quite as stable the way she was so correcting them may help with her balance and walking in general.


So off we were for another doctor. Addison was getting as tired of all this as I was at this point but I wasn't going to quit until this kid was walking, talking, and developing perfectly. Long story short, he measured her feet and told me about the braces we would be getting. They were help align her heels and ankles the way they were supposed to. It wasn't a hard brace because it was important she could still move some.

Two weeks later, her braces were in and now I had to fight her every day to get them on her. She hated them. She wanted nothing to do with them. I basically had to hold her down and force them on her feet. There were several times when I did it that I wondered why I was doing all this. Why was I forcing this on my kid? She has been through so much and missed out on things, and now I am doing one more thing to do her. I am forcing her to be different again. I am forcing her body to change. I am forcing her to do something else she didn't want to do.

But each time I had to remind myself why I was doing it. I was doing it because in the long run this was the best for her. It was only braces and it was only temporary. And she would get used to it. Like it or not these tiny two braces would become part of our normal.

 
And they have. It took awhile but now Addison has accepted them. Each morning I get her dressed then she sits there calmly while I put her on her braces and shoes (she has to wear shoes with them because they are plastic and therefore might be slick - and as an add bonus we had to buy new shoes because they didn't fit into her normal size shoes). Nap time comes around and we take off our shoes, braces, and socks and wiggle our toes. Then when she's up again it's back into the braces.


So it's been about a month now and it's starting to make a difference. The doctor told me we could start to see a difference at about 3 weeks, but I was doubtful. That seemed really fast. But in a few weeks time, one of the rare moments when she wasn't in the braces I managed to snap a picture of her standing.


I know the first picture was from behind and this one was from the front, but I can definitely tell a difference. She is standing a little more flat on her feet. It's still a long road from here but it helps to already see improvement.

This has been a heck of a journey to get her to where she is now. We aren't over yet and I plan to continue to help fill you in, but hopefully the updates slow down because things are just developing as they are supposed to. I am really excited about how well she is doing. I am not kidding when I say that I look at her and watch her walk or do whatever it is she wasn't doing before and want to cry. It is pretty dang amazing.

To catch up on the story:
The One with the 18 Month Old Who Can't Walk
The One with the 20 Month Old Who Still Can't Walk
The One with the 21 Month Old Who Is Trying to Walk and Talk and Going to Get Help
The One with the 21 Month Who Did This





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