Thursday, May 17, 2012

Botox Tuesday ~ Vision function ~ My thoughts

Brendan has Botox injections in his legs and right arm on Tuesday. The sad part is it doesn't even phase me anymore. He has been through so much that Botox is nothing anymore. I will be worried that day since he does get put under and I know something can always go wrong but I don't stress for weeks beforehand anymore. I don't dwell on it. It is just something that has to be done and we will get through it. I know he will throw up afterwards and most likely in the van like every other time :). I will have a bucket ready and I know he will actually tell me he has to throw up now and there is an 80% chance he will get it in the bucket!! I am so thankful for the fact that Brendan hasn't had to have Botox since October 2010!!! Thanks to PERCS he has been doing great and hasn't needed it. He is getting a little tight and we are doing it basically for 'maintanence'. He is still doing great and walks flat footed with his left but has resumed some toeing with his right. I still believe PERCS was the most productive surgery he has ever had and has given him the best advantage to overcome his tone. He actually has leg muscles in BOTH calves. He is able to pedal his bike on his own for long distances and use his muscles more when he walks. I honestly NEVER thought I would see a calf muscle on this child and he has them! I will try and take a picture...they are so small but when I first noticed one on his left leg I actually thought something was wrong and he had a swollen leg. All the sudden I realized.... OMG THIS IS A MUSCLE!!! I couldn't believe it. He is turning 10 this year and I can't believe it. One on hand I think where has the past 10 years gone and on the other hand I think of how much we have been through together over the past 10 years and wonder how I have gotten through it all. He is doing so well and has come so far and I am so thankful. He is such an amazing little boy and I always say that but it is true. He doesn't care that he has a disability or that he has to use a wheelchair. He doesn't care that his sisters can get up and run around. He is okay with who he is and that makes life so much easier. He could barely speak at 5 years old and now he is talking with complete sentences and using more vocabulary every day. Bren had a vision anaylsis done at school again. As a reminder he has cortical visual impairment which basically means his brain damage causes his brain to not perceive images like it should. He was basically blind as an infant and on a scale of 1-10 for CVI he was at a 1. Today he is at a 9/10!!! Isn't that amazing?! This proves the brain is always repairing itself and he is STILL progressing. The specialist saw major improvements since she evaluated him 2 years ago. She seemed surprised he is functionally at such a high level. He still has some issues with his right peripheral vision so I need to find out what is causing that because she didn't seem to think it was CVI related. The worry never ends, the appointments never end, the therapies never stop, but over time the anxiety lessens, the saddness fades, and the acceptance of it all sets in. This is my life. I have a disabled child. I have a handicap accessible vehicle. I had to renovate my house for my child to be able to live independantly in and I have 100 more things to do than most parents but I can do it all and I do. I continue to live my life and fulfill my dreams and raise my children to the best that I can. I can look back and see how much we have all overcome and feel proud of everything we have gotten through together. There is still more to come and some of it I am not ready for but at least I know I will make it through this difficult journey in life and my son will be there right by my side with an amazing attitude about his life.

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