Hoping to someday find M's brother adopted in the U.S. -
Myckola Oleksandrovych Markov - 8/26/2003

Tuesday, February 28, 2012

Botox, SMOs, & a friend!

We spent 4 hours at the Kluge Children's Rehab Center yesterday.
The first good news came at registration.  Mariah had gone from 29.5lbs in October to 34.5lbs now.  She gained 5lbs!  Whoo hoo!  The Carbo Gain shakes are working!


Mariah's Dr agreed that botox would be a good thing for her right arm so we waited an hour for insurance approval (think $1K a vial!) And got it done. 

Her Dr also said she has gotten much stronger and has good range of motion in her legs so we could go to SMOs!  Yay!  Three months ago they refused to let her have hinged AFOs because she was too weak and now she doesn't need the high calf support at all.

While we waited for botox approval, she got casted for SMOs which she loves doing now!

She got to pick out colors and boy did she pick out a doozy of a combo!

Multi-speckled foam padding, rainbow stripe velcro and bright blue straps. Oy!!

The orthotics guy cut her AFOs down to improvised SMOs so she can get used to less support.



While we were there, we met up with another CP mom at Kluges and had lunch in a really small, really weird little cafeteria.  Her little boy was so sweet and is also adopted from Ukraine very close to the same time that Mariah was.  She stayed after lunch to help me hold Mariah down for her botox.  She screeeeeeeaaaaaaaammmmmmssssssss from the time she sees the needle till after I pick her up.  I also have a tendency to pass out or sometimes throw up (or both) when faced with needles.  Thanks Marnie!  I didn't mention that I might throw up... just the passing out part, but fortunately I was ok this time.  Whew!  Honestly the nausea part comes only IF I begin to black out and fight it.  Fun right!?

The Dr also mention Mariah's legs still look great from botox 4 months ago and she might not even need botox in her legs again, but we'll see.  It typically lasts 6-8 months.

We also got a look at her MRI from the summer and it was fairly non-surprising.  It showed a bit more damage on her left side in the arm area so no surprise its spastic.  Her Dr. just wanted to check the MRI to make sure that it was indeed the brain damage causing the spasticity and therefore the botox is a good choice for treatment.  She has a mix of spasticity in her body that he said was kind of unusual.  Tight right ankle but floppy leg.  Looser left ankle but tighter left hamstring yet unaffected left arm.  Usually most people with CP have a definite side that is affected more, but with Mariah its kind of a mix.

I asked if it looked like there was any reason to think there was a cognitive impact and the Dr. said it looked like the damage was mostly in the areas that affect gross motor skills.  He also said that the brain wasn't formed quite "normally" while pointing at the lumpy folds on the outside edges close to her skull.  Not sure what "normal" looks like though!  Of course with Mariah standing there looking at her brain image complete with eyeballs on the screen saying, "Oh dat is so gross!  Dat is scary! I don't wike dat!  Ewww!!"  we all had to laugh.  One of the assistants was like, "Well she seems really bright!"  Yep, she impressed everyone with her chattering. 

Overall, she's doing awesome!  Her Dr. said that there really isn't anything else that needs treatment right now so just keep doing what we're doing because she is making great progress. 

I realized once Marnie and I said goodbye that we didn't take a single photo of each other or our kids together!  Ooopsie.
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We witness a miracle every time a child enters into life; but those who make their journey home across time and miles, growing within the hearts of those who wait to love them,are carried on the wings of destiny; and placed among us by God's very own hands. --Kristi Larson

 

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