Monday, December 7, 2015

Move with me!

Today is the last day of Infantile Spasms Awareness Week, so it seemed fitting to post our update on Bex's progress with Physical Therapy today…

Bexley has been doing great with her physical therapy!  She works very hard. We are so proud of everything she has accomplished within the past several months.  Her PT is frequently commenting that it is evident that Bex is getting stronger.  Muscle tone is a confusing concept to explain and understand, but we found an interesting analogy recently that helped put it all in perspective for us.  A child with low muscle tone has to put forth a lot more energy into getting their muscles moving to do what they want to do.  The PT who wrote the article made the analogy that it is similar to that feeling when you finally get comfy in your favorite chair at the end of the day. Then someone calls you from another room and you have to muster up the energy to get up and go see what they need. 

I can't even imagine having that feeling all the time.  However, seeing my baby girl continue to get stronger, helps me realize just how tough she is.  Below are some quick highlights of what she has been working on and accomplished in the past several months: 

Army crawling and Pushing up – Bex has gotten so much faster and better with army crawling!  I have to do a double take when I realize she suddenly went from one side of the room to the other in a short time.  Her biggest accomplishment is that she has learned to bring her knees under her and push up on her arms (see video below).  While this may not look like much, it is a huge improvement for Bex and shows just how much stronger she has gotten.  Remember the analogy I alluded to earlier about kids with low muscle tone…this is why getting into this position by herself is such a huge accomplishment. 

Orthotics - Bex loves her orthotics!  We were concerned that she could have issues adjusting to her orthotics, but she really enjoys wearing them.  She gets excited when we ask her about putting on her shoes.  We have noticed they do make a difference as they help her seem more stable when standing.  There is always the debate to brace or not to brace, but we feel bracing was the right move for Bex.

Flowers and Ladybugs SMOs

Gecko Stander – About a month ago, we acquired a stander for Bex. It is a piece of adaptive equipment that allows Bex to stand upright and bear weight on her legs while providing her with the trunk support that she still needs.  She loves it! Again, we were worried that she might not like it because it does "confine" her.  Since army crawling has become easier for her,  she really likes having her  independence on the floor to move around and explore things.  However, she really likes standing in it and reading books or playing with certain toys or puzzles.  Of course, we are also guilty of letting her watch her favorite TV show in it as well…but we try to limit that exposure. :) She can stand in it for over 30 minutes. When we work with her on standing outside of it, we can certainly notice improvement.
I love my stander!!

When will it be my turn, Bex?

Bex and Rhett are certainly keeping us busy these days, which is one of the reasons it has been awhile since our last post.  Speaking of Rhett, we really think he has been a blessing for Bex!  She has become more motivated to move around as Rhett has become more mobile.  She loves playing with him and he lights up whenever she comes into the room.  It’s a little bittersweet, because as Rhett develops he makes it look so easy. Bex has to work twice as hard to do certain things, but she pushes through and in the end always has a smile on her face.  Of course, this just shows me how much of an inspiration my daughter is to me.  Like I said, she will move mountains!
Baby brothers are so funny!

Rhett, what are you doing to my books?
Little buddies!!!

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