Utah

well it's been a while. Again. I am going to do a better job of blogging for my own self! I can hardly remember anything these days! Our family recently took our annual trip to Salt Lake City to see the SMA specialists. It's hard for me to believe that Taysen has been on VPA for 4 years now....just a tiny little 2 year old now my big 6 year old. I wasn't sure what to expect from the testing this year. At times I think he is doing so well... some things even stronger than last year; on the other hand I have noticed him struggling with some things this past year as well. Taye has had a tremendous growth spurt this past year.. both in height and weight and that definitely affects his strength and endurance.

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.

Monitoring oxygen levels since he was on Versed. We all get a good laugh at his expense when he is on Versed. He is a funny kid as it is, so you can imagine the things that come out of his mouth on drugs!

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.

getting measured

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.

DEXA scan.

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. :(

Overall, a good report. We have much to be thankful for. That little boy means the world to this family! To hear that he is stable, gives us much strength and hope. We Love Taysen!