Pt, urology & mito update

Addyson had a pt eval today. Her motility dr at chop recommended we reconsider Pt and then with some recent gym homework we noticed some issues. So today she had the eval. They noted:

-Weak at hips
-Right side weakness 
-Core weakness

The pt recommended 3x per week. We cannot meet that often but we can work with her at home nightly. We worked on the recommended activities last night as a family. This morning I’m brushing my hair and I hear Ethen counting 1-2-3… I look out and he’s doing sit ups with her!!!

It was the cutest thing. 💕

We have been talking with her mito dr and the compound pharmacy on her mito Meds. We finally got the cost for the cocktail. It’s very expensive and means and additional 6 meds per day. 😞 I never knew meds would be so expensive with having insurance. It’s insane! the good thing is that this cocktail is being made specifically for her.

She also recently had her bladder and kidney ultrasound. Her kidneys look good!! They did see debris in her bladder. They don’t believe it’s a uti. They are leaning towards her not emptying completely. We have a follow up in a few weeks to discuss.

The kids went on a bike ride today with mom mom and pop pop so that was fun! The kids have been bugging me to let them go on a bike ride so today we did!

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