Saturday, March 15, 2014

January Surgery

January was not all fun and games. Along with a neurological change in Tyler, we chose to add insult to injury to the poor kid and do up his body for some major tune ups.
We generally do Phenol for his little legs but both our Utah doc and our Arizona doc wanted to make sure that we were all on the same page. We had to try some botox before they kept doing phenol. So we got our with our Neurosurgeon and got the ball rolling. We finally also got to a point where Tyler's retina's were stable so we needed to do some major muscle surgery to help his null zone. I was not ready for how bad the surgery on his eyes were and I broke down sobbing. His tears were bloody and he was so upset that he couldn't scratch his eyes and I cried because I am so sad that we have to keep doing this. But we sure were proud of how well he did.

He had to miss a week of school so we were at home doing lots of entertainment. He wanted to ride his bike a lot and go to the park, but with casts on his feet he was not loving that loss of independence. It made it a lot more work and him a lot more angry. We were already dealing with a lot of anger issues and it made for a long 2 weeks.
One of the days we were out of school and he was SOOO angry. He was so upset that he didn't want to do anything and he curled up on the floor right inside the door and he fell asleep. Grayson was so so hard with Tyler this week. He was mean and horrible and would hit him until someone ended up in tears.
The redness went on for a few weeks and is still read now but his eyes look so much better. The picture that I have below is from the back of my camera  and his eyes are straight. We are thrilled with the results of the surgery so far. Now we just need his glasses back.
One of the biggest bonuses that we had, we were home when Tyler's best friend came to town. We were able to go to the IDEA museum and see him and touch him. They were great to allow Tyler some one on one time to get up close and personal.
Tyler was casted for just over 2 weeks. It was a VERY long 2 weeks. Tyler was unable to do anything that he is able to do for himself. No showers, had to be carried, had to be in a stroller. It was hard. He is now in full legged braces. And seems to be doing well. We need to do botox again in April.

Jan. and Feb. were behaviorally very hard months. Tyler was sent home from school 2 days and he has just been very very hard. It looks like we are working on a few things to help him.

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