Monday, July 13, 2015

Kanaan's Kidney and Shriner's Update

We met with Kanaan's new pediatrician/nephrologist last week. She is very nice and very thorough. She took labs and his labs were overall good, his creatinine was stable. His vitamin D was low so we have started him on a supplement. His sodium was at the low end of normal, and his potassium was a tad low so she suggested we give him things like juice and fries occasionally. He asks for fries every single day, so that won't be a problem. We will re check his labs in a few weeks. She does want us to see a nephrologist in St. Louis at St. Louis Children's hospital in August. Basically  because she doesn't have the resources here that the nephrologist would there. Also once his function gets worse, we'll need to see the nephrologist there anyway, so we are establishing care now, to be prepared. We go to STLCH on August 24.

We also had Kanaan's appointment at Shriner's Hospital for Children last week as well. Kanaan is still not walking more than a few steps, and his physical therapist mentioned that his legs look knock kneed. Kayla had surgery at Shriner's when she was young for being knock kneed so, we definitely wanted to get it checked out.

We saw a Nurse Practitioner, Radiologist, and Physician. His xrays were normal, so he isn't knock kneed. It just looks like it because of the way he stands. They did say he has really loose joints and low muscle tone in his lower body. He was fitted for orthotics (SMO), they are small braces that will fit inside his shoe, they will help give his ankles support when he is walking. They also want us to meet with Neurology, regarding his low muscle tone. They said he doesn't have any other signs they would be concerned about, but they want to look into everything. We go back on August 14, for the neurology appointment and to pick up his braces. They warned us that the neurology appointments can take 2-3 hours, because they are very thorough.

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