Friday, September 30, 2011

24 Weeks Post-Rhizotomy

It is hard to believee that it has been 24 weeks since Nina had her SDR surgery. I have not done a very good job at keeping updates on how Nina is doing. I am not the type of person that notices gradual process and I think that makes it hard for me to be objective about the changes in Nina. My initial thought is that things are the same, and that Nina has not made much progress. But that is not true.

A rhizotomy does not only help with walking and gross motor skills. Nina's fine motor skills are actually very good. The only thing she really struggles with are letters. She cannot get letters. Even when tracing letters she has a hard time. She can color and cut, she can draw a picture of a person, and her overall fine motor skills are almost the same as most 5 year olds. Pretty incredible.

We spend a lot of time focusing on walking. A couple of times we thought we had finally turned the corner and we were on the road to walking independently. There have been 2 different times where Nina has walked around the house. On her own. No walker. No help. At school, she uses her wheelchair and her walker. The teacher mentioned that she is beginning to cruise a little and taking small steps on her own.

There are times when it is hard not to get frustrated and wonder if she really wants to walk. We are not sure what it is that will give her the final push so she takes off. But as Andy and I were talking the other day, we realized that Nina is walking. She is actually walking independently, but she has no idea. She thinks we are actually helping her. The last few weeks Andy and I have been holding the back of her shirt with a reassuring "I got you." And she walks. On her own. For as long as she feels us right behind her and feels we are touching her shirt, she can do it. The thing is, we are not doing anything at all, just walking right behind her. If we let go, she feels it and immediately falls and looses her balance. At this point it is not weather Nina will walk or not. She can walk. She is walking! This is a battle of her mind, of believing she can do it. This, I realize, might take a little longer. Yet, we are encouraged, because this girl can walk. She is actually walking!

Nina continues to walk on her toes out of habit. When she uses the walker we remind her of that several times and she gets those heels down no problem, even without her braces on. I am not sure if this is just Nina or if it is common after a SDR.

In a month we go back to Mayo clinic for Nina's 6 month follow up. We are interested to hear what the doctors have to say when they see her again and what their future recommendations will be.

I leave you with a video of Nina walking this afternoon. With Andy holding her shirt. It is not the best quality video but you will see what she does on her own.


video

Don't forget to enter your name for a book giveaway "A Good and Perfect Gift" by Amy Julia Becker. Just click here and go to that post.

And tomorrow starts Down syndrome awareness month, I am excited! Stick around as I share our journey with Down syndrome for the last 4 years!

4 comments:

  1. Seeing Nina walking was so encouraging! I have faith in her; she will, eventually, work through the "battle of the mind" she's got going on. At least she's got supportive parents in you and Andy to keep her going. I'll be praying for her. :)

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  2. ELLEN LOOK AT HER! That is huge progress! Everything about how she walks is changing. I'm shocked. I am right with you on not noticing gradual change. We can't wait to see you all again!

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  3. Awesome! That's interesting that really all Andy is doing is holding her shirt and yet she feels like that gives her what she needs. (reminds me a little of Dumbo's magic feather) Well, now we know better how to pray! I liked seeing a little of your house, too!

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  4. Awesome!!! Love that video! Ben finally has an appt to see the neuro on October 25th! Can't wait to hear what he has to say about Ben and SDR.

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