Monday, April 8, 2013

*Inch*stone Captured

When Emma was very young, when we first found out about her cerebral palsy, we thought that perhaps only her arms would be effected.  We saw that she wasn't using her arms or hands very good but we thought her legs seemed to be moving around pretty well.  I had researched a ton on CP and found that usually CP has the following effects:

  • All limbs effected
  • One side of the body limbs effected (i.e., arms and legs on right side of body)
  • Legs effected
We wondered early on if it was possible that Emma would "only" have her arms effected and that the rest of her body would work fine.  Doctors didn't really have an answer for me and we started therapy to address her arms.  Chris and I expected that she would walk but maybe have trouble with writing.  Let's just say our expectations have been reset over the years because as of now she is neither writing or walking unassisted.  

Emma had THE BEST occupational therapist (OT) for early intervention and she was able to see her up to 3x/week and made a lot of progress with her hands and arms.  Since we moved Emma has only received OT at school and we've noticed that her arms were getting tighter and her resting position was often with her arms curled up, wrists bent and thumbs inside her fist.  She wasn't always in that position so I hadn't realized just how tight she had become until I noticed that in most of her recent photos her arms were in this non preferred position.  Here is a photo with her left arm in the curled up position, but lots of times she had been curling up both arms.  

I started to worry that most of the doctors Emma saw were not even looking at her arms.  They focused on her hearing, her legs, her hips, her feet, her feeding, her talking, etc.  Everyone I talked to about her arms sort of glossed over my concerns so I made an appointment for her to see a physiatrist and I'm so glad I did!  She is concerned with the whole of Emma.  Not arms, not feet, not ears, etc.  All of Emma and she listened to my concerns about her arms and made some very good suggestions and she is now on team Emma and in our every 6 months appointment rotation which makes me very happy!

Some changes we've made is focusing more on arm/hand/wrist stretches, purchased Benik splints to help her wrists and thumb stay in a more neutral position and added in an extra OT session outside of school (not sure I'm thrilled with the provider, though, so we will likely be looking around for an alternative provider that fits in our schedule).  

Emma with her splints on
The past couple weeks I've noticed some changes.  I've found her sleeping with her arms over her head on several occasions.  She has a hard time raising her arms up high and in rest she typically slept with her arms curled up or with them by her hips. And then this morning when I went in to wake her up she seemed to be starting to stir and she brought her forearms over her eyes and rubbed a few times.  She didn't rub her eyes with her fists, but did slide her forearm back and forth so there was no mistaking it was a rubbing of her eyes before she opened them like most of us do in the morning.  And then she opened her eyes and was a bit startled to see me standing over her smiling down and she giggled.  

When we were in Washington D.C. Emma was resting in the corner of a chair and she brought her hands to her mouth and put her finger in it like she has been sitting like this for years.  She hasn't and it was big news in my book that she was sitting like that while moving her arms so loosely.

Yesterday we visited the zoo and Emma was very interested in the animals - she is branching out from her love of watching people at the zoo to attending a bit more to the animals ;-)  At the giraffes she even reached out for the fence, placed a finger on it (wow, this is HARD to isolate a finger from her fist!) and then her open hand on it before swinging her arm over the whole bar.  I caught a bit of it with my camera and was so excited because this was a big *inchstone* for Emma.  

Emma's starting to use her arms more and it's worth documenting;  it's worth celebrating!  

4 Comments from readers:

Anonymous said...

That's spectacular!!!
You're so awesome at leaving no stone unturned. I think many people who parent look back on their parenting with some regrets, it's a natural human thing to do, but I can't imagine you will be one of those people. Emma's constantly moving forward and you're right there to facilitate and celebrate and SHARE it with the rest of us. It gives me chills.

Laura Garrett said...

Definately worth celebrating....The Benik splints have helped Cody a lot. Love how well she's sitting too :)

Unknown said...

I completely understand and share in you celebration! Tracy (5) sat up on the edge of a bench, feet flat on the floor, for 30 seconds last week. A few weeks ago she had sat up for 40 seconds, but was different this time was that she was holding her arms out and when she would sway one way, she would will herself the other way (like she was trying to balance). Also, For the last few weeks we have been trying out walkers for Tracy. I am really nervous about choosing one because the last walker we had (a green and tan Rifton) for three years and she never did walk in it because (i believe) it was too heavy for her and it only succeeded in giving her bruises on her inner thigh from the seat rubbing. So this week the therapist brought in a "Pony" that had been donated by a family, Tracy was racing around the room squealing and i am telling you I have never seen her little legs move so fast! I think we finally found a winner! It just makes me want to cry to see her moving around independently, she has finally found the freedom we have been praying for!!!!!

Kristina said...

Thanks, ladies, for the comments! I loved reading them.

Heather - Such a lovely comment. Regrets? Yes, I have a few but I know I'm doing my best so I can't spend time worrying on what was already done and just try and focus all my energy into moving forward.