yep i'm behind. week 13 "get emotional". not a good technical photo, but i love it for the snapshot that is is.
Tuesday, April 24, 2012
Orthopedic update
On Friday Taysen and I went to Seattle to meet his new orthopedic surgeon. Dr. Song has seen Taye since his diagnosis, but he recently moved back to CA. I really liked the new Dr. (Dr. Dales) He has a lot of experience and approachable as well.
Taysen's curve has increased to 19 degrees. This is not great news. After having stable spine xrays for the past several years, the last 2 have gotten worse. Last one was 9 degrees and now 19. His hips are also a little worse (but was hard to see on film) His feet are also getting very tight.
What does this mean? Well, the topic of surgery came up. He says he waits until 40-50 degrees for the spinal surgery. It may progress quickly or slowly, or (although not likely) not at all. If we can't wait until he is about 11or 12 years old, then he would need growing rods placed. They would go back in every 6 months and grow the rods until he is ready for the fusion.
There are a lot of clinical trials in the pipeline and I really want to hold off as long as possible so that he won't be excluded from any of them for having his spinal fusion. In the meantime, he is getting cast for new AFO's and TLSO next week and then new xrays in 6 months. We will be going to Salt Lake soon, so it will be good to talk with Dr. Swoboda about it.
Other than that, he is doing great! Only about 8 weeks of school left and then we are looking forward to summer break. At school, he wrote a short story about himself and I recorded him reading it to me. He is learning to write paragraphs and somehow always manages to include something about his brother. Last week's paper had a sentence that read "My brother is bossy."
Taysen's curve has increased to 19 degrees. This is not great news. After having stable spine xrays for the past several years, the last 2 have gotten worse. Last one was 9 degrees and now 19. His hips are also a little worse (but was hard to see on film) His feet are also getting very tight.
What does this mean? Well, the topic of surgery came up. He says he waits until 40-50 degrees for the spinal surgery. It may progress quickly or slowly, or (although not likely) not at all. If we can't wait until he is about 11or 12 years old, then he would need growing rods placed. They would go back in every 6 months and grow the rods until he is ready for the fusion.
There are a lot of clinical trials in the pipeline and I really want to hold off as long as possible so that he won't be excluded from any of them for having his spinal fusion. In the meantime, he is getting cast for new AFO's and TLSO next week and then new xrays in 6 months. We will be going to Salt Lake soon, so it will be good to talk with Dr. Swoboda about it.
Other than that, he is doing great! Only about 8 weeks of school left and then we are looking forward to summer break. At school, he wrote a short story about himself and I recorded him reading it to me. He is learning to write paragraphs and somehow always manages to include something about his brother. Last week's paper had a sentence that read "My brother is bossy."
Sunday, April 1, 2012
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Taysen is our 7 year old ray of sunshine living with Spinal Muscular Atrophy type 2. He has a spunk and zest for life like no other and inspires everyone he meets. He has a huge imagination and a great sense of humor...he feels it is his purpose to make people laugh. Taysen loves to drive his powerchair at speed 5, watch movies, play with his toy animals and eat junk food.
River is our 5 year old little sweetheart. He has a sensitive soul, patient and protective of his brother. He is a huge blessing to our family, always ready to give and recieve a hug. He is sometimes called "Running River" as he is always on the go! River likes to play outside where he swings, climbs and gets dirty. He loves books, watching "The Berenstain Bears", and cookies & hot chocolate
