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Monday, February 20, 2017

2 Year Anniversary - SDR

Part of me can not believe it has been 2 years already since he had Selective Dorsal Rhizotomy. The other part realizes we have all put in so much time, effort, tears and sweat over the last two years that there is no way I wouldn't know how long it has actually been.

Honestly it has NOT been easy. It has been hard. We have all shed some tears. We have all lived life a little differently since that day we handed him over to one of the best surgeons in the United States, Dr. TS. Park. We were watching videos today and were reminded of how bad cerebral palsy was deteriorating his body at just 12 years old. He could hardly walk. He was so stiff and didn't bend his knees. He basically shuffled around using mostly is arms propped up in his walker. He was on his toes and I knew he wouldn't be walking for much longer. He was headed into full time wheelchair usage at just 12 years old. I am so happy I finally decided to go ahead with the surgery. It took me 9 years, yes 9 years to say "Let's do this". I will say it takes people months to decide now thanks to facebook groups. 9 years ago I felt alone. I lived a life with my disabled son and lived it alone. I had babycenter and that was it. One group that I joined months after he was born searching for answers and advice. So much has changed on the internet in the last 9 years. Parents are very lucky to have the support of all those groups and parents. I am always chatting with people and encouraging them and sharing our story.

The last year was not an easy one. Someone decided to grow over 3" which caused him to walk crouched which caused pain and made walking very difficult. It came out of nowwhere. Over the summer it was very apparent he needed SPML. Of course me being the mom that I am decided to throw in a right bicep tendon transfer making recovery BRUTAL!!! It was so worth it but it has been almost 4 months and he is just beginning to progress again. SPML was the best surgery he could have had after SDR and he is blowing away his prior progress.

Brendan can now:
Pedal his accessible bike for 1 full mile without assistance (I can not wait for Spring to see if he can progress even more)
Walk for 30 minutes straight on the treadmill with out any breaks (this actually caused tendonitis in his right knee which is a total bummer)
Walking is much better but he still needs some major strengthenng in his quads and glutes
He is walking faster in his walker and still has zero supports
Besides his knee hurting recently he was enjoying walking a lot more
Watching previous videos made us realize his speech has improved. Partly due to his brain having less to fight and partly his muscles. He speaks more clearly with better sentence structure and more lengthy conversations. He is always improving in speech but hearing the difference was awesome.
He is continuing to gain muscle mass. Those legs are difficult but they are bigger and he had new leg braces made after his last surgery and we already had to have them blown out because his calves got too large! Can we say EXCITING?!
His right arm was casted for one month and he wore a splint for another 2 months and yet his bicep is popping! Not sure where that muscle came from but it is there
He can pump out leg presses on the total gym one leg at a time and kills it
He can hold a bridge for 2 full minutes
He has gained over 15 pounds and looks healthy
He has finally left size 8 in clothing and we have been buying size 12 recently

He is happy and healthy and we will continue to see what his body can do. Progress is slow, beyond slow. It is hard at times sad when I see 3 and 5 year olds blow past him but I have to realize he is a spastic quad whom was almost wheelchair bound. I was very down for a month after the last surgery. I expected a much quicker recovery. I had no idea his arm would set him back so much. His school therapists wouldn't help at all and still are not helping do anyting with his arm. We had to fight and had a meeting and yet still nothing is being done. I can't fight about it any longer. I stretch it and he attends therapy weekly. They didn't do anything differently after SDR yet for some reason after this surgery they won't touch him. Whatever! Moving on.

I am finally in a better place mentally because he is progressing. He needed time. His bicep transfer was difficult on him with a slow recovery. it hurt him a lot. He acted like he never had SPML but he is still favoring his arm. We will see Dr. Yngve while in Texas for therapy so I am looking forward to see what he has to say. I am hoping he took measurements because his therapist said he gained over 20 degrees in range since the cast came off.

I have to remind myself to still take it day by day. Even 2 years after SDR.