I talked to Chicago and all of Kya's labs are in the normal range. Her aldolase is 6.7 which is good and normal, but it is up 1.5 from April 2. I don't know why and neither do they, but they said it doesn't matter normal is normal. They are not the ones with a sick kid!!! That is a big jump in 3 weeks as far as I am concerned. So this is my concern. I know as they start to flare levels climb. I know this and they know this so why am I the only one concerned? I guess because I am the mommy!!! They said we would continue to taper and watch her levels. I guess that means we will see in June when we have an appointment at Childrens in OKC. (If I don't have them checked before then!)
We are in the process of getting ready for occupational therapy. Kya is still a little weak in the torso and has a sensory issue. The two combined don't work well. So they are going to see if they can help with the sensory issue to avoid problems from the weak muscles!
Besides those things, Kya is doing good! She has been going strong and is signed up to start Kiwanis T-ball in June!? Should be interesting. She has a dance recital May 22nd and is very excited about it! We got her dance pics in yesterday and they are adorable! I will try to post them when I get a chance.
Please continue to pray for healing in her body. Also, please pray for some nice not so sunny Oklahoma days this summer! We are already trying to avoid the sun. Thank you so much for the prayers and concern!
Kalee
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