Here he is getting the EMG which showed that he has MAINTAINED since last year. The remaining nerves have sprouted which is great because SMA is a motor neuron disease.. the nerves typically die which results in muscle atrophy.
The main problem we are running into is Taysen's weight. He has gained so much weight this year.. he has doubled his steroids for his adrenal disease, and also VPA can often cause weight gain. This is not good for his weak body.. it makes things worse and more difficult to move, more pressure on his spine which can increase scoliosis, etc. We are going to keep him on the drugs and really, really, REALLY watch his diet and re evaluate his weight in 6 months. Taking him off drugs is just not an option right now. it really freaks me the hell out. so our little man is adapting a diet of steamed veggies and fruit and he is being such a good sport. so far.
For PT he has also stayed stable. He might have even scored one point higher than last year, but i couldn't find the report from last year. Here he is doing his manual muscle testing.
River is always such a great distraction for Taysen. He is always ready to play animals with Taysen or they will just sit together and talk. My little monkey man is a special little brother.. always right by Taysen's side during any procedures. unless he crying. Then River plugs his ears and leaves the room. :(