Muscle Clinic Day

Today was muscle clinic day. Overall we had great results and everything was relatively stable.

Cade was not particularly thrilled with the blood draw to check his vitamin D levels or the flu shot but both were tolerated just fine.

A lot of information comes at us in a short amount of time and sometimes that takes us a while to process. Today was the first day they began mentioning that we will probably see some progressive weakness in the next year. I felt like the air had left the room for a moment when I first heard that.

We have felt that Cade is still doing pretty well compared to many others. We have still elected not to put him on steroids but have felt that everything else we have done for him has helped him. I couldn’t quite get a read on if they really thought his walking would be much more limited in a year or if this is the talk they give all families of 11 year old boys.

All data shows that most boys stop walking by the age of 12 but I don’t really feel like we are there quite yet. So I will still try to process through this and put my faith in God and see where He leads us.

Cade’s lung function was still really good. He tries really hard to beat his prior scores on his pulmonary function tests.

He doesn’t mind when the cart for the PFTs comes down the hall to his room.

Yesterday was his neuropsych test and it was a long day for him and us. Lots of questions and testing. But we now know for sure that he does not exhibit any signs of any learning disabilities. They did have some suggestions to make for some more accommodations to his 504 plan.

When we were going on our lunch break yesterday, Cade looked at me and said: “I have no idea why the doctor would care if I can do math!”. I burst out laughing and tried to explain to him what they were doing but he had already moved on to figuring out what he was going to get for his lunch.

The one thing Brent and I both noticed the most was how much Cade enjoys his independence from his scooter. At one point he started circling a pillar in the hospital and asked me if he made it drift! I’m sure it won’t be long until he figures that one out!

We are currently waiting to get to see Uncle Kevin and Aunt Kim. This is a huge perk of driving 4 hours to go to clinic! We now get to see them every 6 months for sure!

Blessings. Lynnette

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