I know it has been awhile since my last post, but to be honest there has not been too much to tell until today. We had several test run during December and the good news is that they all came back normal. This includes the biopsy of his spine.
We have not seen any improvement in his walking or energy. We did have an appointment with PMN&R at Texas Childrens'. Which is just a fancy name for a doctor of physical thereapy. Of course physical therapy was recommended again along with speech thereapy. So with periodic phone calls with our neurologist we discussed treating him with physical thereapy and possibly trying Cooper on a trial period of a medicine for dystonia.
Today we saw a different neurologist at Texas Childrens that specializes in movement disorders. She asked Cooper to walk and immediatly noted that he was having severe muscle weakness. This is something we have already noticed, however, she noticed that his muscle weakness was in his upper body as well as his lower body. So we are now leaning towards a muscle disorder. There is ANOTHER neurologist that specializes in neurological muscsle disorders. We will be seeing him as well. The doctors are now starting to see his muscles degenerating.
They wanted us to test him when he was having one of his "can't walk" moments for his potassium levels. And considered having his admitted for this and other testing. While we were there he had was unable to stand on his own, so they went ahead and drew blood right there in the doctors office.
We will be heading back to Texas Childrens on Thursday to test his heart. Since the heart is a muscle they are worried he might start developing heart problems as well. Then we will be having a muscle biopsy done in the beginning of February.
Basically we are now leaning towards a muscle disorder, but when we asked them to give us an idea of what they were thinking, they told us they would rather not alarm us. So we are back to the testing and waiting phase.
Please continue to pray for Cooper. Thank you to everyone who has been following are journey. Your enecouragement means so much!
The Cannon Family