In the past fifteen years, there have been so many roller coaster rides. If you read this blog or follow David on Facebook, then you know, and you know I have taken you all along for some of those tougher rides. Currently though, things are exciting. This doesn't mean that the minute I push "publish" on this blog that we won't be right back on the roller coaster, but it does mean that right here and now....in this moment.....David is doing and accomplishing things that he has never done before. He is making daily and consistent progress and yesterday after PT, I had to take some alone time and shed a few tears.
Yesterday at PT, Davids therapist did an updated evaluation on where David is at as to where he was a year ago when he started with her. We set goals back then for David and while he made a little progress here and there, he had a lot of set backs with seizures and his health. We missed a lot of PT sessions and for a while, he lost a lot of ground physically. In January, I almost quit sleeping over the state of David's health.
If you remember, David was doing home bound school because of his seizures. He was throwing them almost daily and sometimes multiple times in a day. He was fairly inactive and even though he was having HB school, he was just losing so much. His little body looked frail and his ribs stuck out like razors. I saw it and was trying to figure out what to do as I met with doctors, his PT and his school team. It was getting pretty devastating.
It was at this time I started researching alternate ways of eating, diets that worked for kids with cerebral palsy and foods that would help to build muscle in his body and strengthen him. Once the diet was in place, we hit the PT strong. The diet seemed to be keeping him healthy and we were seeing less and less seizures.
Then came the botox. I knew so little about botox but both David's PT, whom I trust implicitly as well as his neurologist whom I trust even more, supported botox therapy for him. I had to try for his sake. After his first week of weakness and my constant fear that something would go wrong....it has been one of the greatest things that has ever happened for David.
So at his evaluation, his PT proudly told me that David has met or surpassed every goal that she had set for him. He can ride his bike, he can walk in his walker without a seat and he can walk pretty good distances with his walker. It was like he got straight A's on his report card and I was so excited I wanted to cry right there. So as these were all met, we had no choice but to set up a whole new set of goals and one of them is......standing on his own! It literally took my breath away.
David is very determined, but even with his determination.....he will have obstacles ahead. They are the kind of obstacles that to this mom are terrifying, but they are also an ends justifies the means scenario, if the outcome is that David is independent. Currently we are getting David as strong as he can be from head to toe and diet and PT are the keys to this. Then there will be his spine surgery which at this point looks to be a necessity. If not done, then eventually the curvature will start crowding his internal organs and make standing impossible. After that recovery and re-strengthening....then there will be the decision to see if he needs his hip done again. You might remember that after his last hip surgery he broke his leg and in the process of the leg healing, his hip fell back out of alignment. If that surgery is necessary, then he will have to heal and once again....re-strengthen. After that though.....the sky should be the limit for him.
It is a lot to process and a lot to keep this mom from sleeping some nights, but it is also exciting. So much has to go into the next couple of years of Davids life and one thing his PT really wants is the gradual banishment of his wheelchair. Yep, she wants him using only his walker as his means of mobility whether it is at home or at school. This means....Mom, teachers, para's and all those who participate in David's day to day life are going to have to be strict with him, patient with his progress and huge cheerleaders in his life. I have no doubt we can all do it. I mean really....who doesn't want to see David achieve his independence?!
So yeah....standing on his own. Those are words that I had been told to never even think about where David was concerned.....let alone hope for. Now they could be his reality. Now.....maybe you understand my tears.
Well....as I said....this summer is exciting and soon we will add the pool to our daily therapy. David is amazing and apparently he maybe walking yet. We will keep you posted. Until then....Happy Summer Everyone!
