Today marks another six months since we last visited Andrew's Neurologist. Steve and I were a bit anxious for this appointment because Andrew started taking Prednisone (a steroid) since our last visit. Starting steroids at five years old was a huge decision, but one that had to be made to give our little guy the best chance at fighting this fatal disease. Today will let us know what kind of impact, if any, the Prednisone has made thus far for Andrew.
Andrew did great with everything asked of him as usual :) Sitting in these appointments and watching our son just move from one test to another measurement to another timed trial and all the while being passed from one doctor to one fellow to one therapist to one nurse is overwhelming to say the least. Not only does Andrew just go with the flow, but he keeps everyone smiling and laughing through it all. These appointments are not short in length by any means. Our experience has been a minimum of 2.5 hours...and seems like forever. Andrew doesn't seem to even notice the amount of time spent at the clinic, nor lose interest in whatever is going on. He keeps everyone going!!
We did see some increase in the results from all of the testing, but nothing to get too excited about. Overall, we are to keep everything the same and continue with our routine. We'll take it. MDA summer camp was discussed since Andrew is age eligible - camp starts at age 6. He's super excited, but I don't think he understands that it's a week away from home and he stays overnight. I still don't think I fully get it - who sends their little 6 year old to a camp over 2 hours away for a week?!?! Good thing we really don't have to worry about it for six more months.
We continue to take one day at a time and pray that Andrew continues to make progress or at least maintains the muscle function he has.
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