these photos were 3 weeks after surgery when John was trying to learn to walk again. He had a severe weakness on the right side. His muscle tone on the left was not up to par either. It took massive work to get him standing again. His ability to walk was seriously compromised and he spent 6 or 7 weeks in a wheelchair. It was hard to keep him in bed or in the wheelchair. He thought he could do what he used to do. He figured he could hop out of bed and go. But, his body wasnt cooperating, which led to a tremendous amount of stress for him.
We worked slowly with Kripa and Olivia to get him mobile again in therapy. It was a LONG process. Johanna bought him a bike to help his quads develop. Lynne and her friend bought him a bob stroller to get him around without the wheelchair. The walker proved to be a vehicle with wheels that John figured he could run with. Wayne from profit nj brought his custom brace to help his right foot be straight.
I spent 5 hours a day in therapy with him in rehab, for three weeks. It was absolute torture.
He had lost so much weight at this point we were watching it on a daily basis. his presurgery weight was 17 kilo-. His low point was 13.9. That is however many kilo- times 2.2 to equate the lbs. I don’t think in lbs anymore. right now he is 17.5 kilos and 2 inches taller. He turned from a linebacker into a gangley knobby kneed skinny boy.
during all of this we contemplated a feeding tube to get him up to par. I just couldn’t stomach a feeding tube. he would be miserable and I felt like the challenge of finding new foods he could eat would be hard, but worth it.
It took him 6 months to go from 13.9 kilos to 17. He’s holding now at 17.8 kilos. Its less than optional. But he has learned to swallow certain textures despite his neck muscles being lower in tone than the normal persons. He is challenged daily by us to try new foods and it is a SLOW process. We are tough on him to consume foods that he doesn’t want to eat or may cause him difficulty in swallowing. It is a hard thing to exercise his esophagus. But, very important to his long-term health.
The brain damage caused his tastes to change tremendously and he would not eat his former favorite foods. NEW CHALLENGE. We had to find out what his new tastes were. The brain is a funny thing. it was a challenge of a mix of texture issues and taste issues. So I randomly ordered stuff from the cafeteria and bought more than i ordered. like $500 dollars more in three months, just trying to figure out what he would eat.
Thank God for people like my good friend Lisa that pressed money into my hand to pay for food. I never counted the amount, but went through all of it in this endeavor.
We finally decided to end rehab a few weeks early after 5 1/2 weeks in the hospital so we could decide on treatment for our childs cancer. We took him home still in a wheelchair and with a walker too. Understanding he had to be supervised every minute of every day. Every second….someone had to be right behind him incase he fell as he had a plate in his head that had just been placed from his brain surgery.
Talk about nerve-wracking. I had to stand behind this child every step even in his walker. every blessed step. I was a mess of anxiety. an absolute mess.
Enough for now, Faith