Friday, April 24, 2009

This is a hard one for me to write because writing this makes the situation more real. I'm still in the process of trying to accept it. A part of me thought about stalling this announcement because then I could deny it - just a little bit longer. Then, another part of me felt that writing this email will help me to accept the situation and move forward. I can't tell you how many times I have broke down and cried from Hunter's appointment yesterday. I also can't tell you how many "what if's" has run through my head. As tears are still rolling, I can say this is agonizing. I received a difficult diagnosis for Hunter yesterday. Hunter had an MRI done a couple weeks ago. The MRI did not show anything significant. His brain bleeds were gone and there is no evidence of having them whatsoever. They had NO affect or damage to his brain. The condition never turned into PVL (a condition that turns your brain to swiss cheese following the bleeds). His cerebellum is a little small and it could cause a slight issue with balance. All this was great news. However, the neurologist examined Hunter. Hunter was diagnosed with cerebral palsy. It is a very mild form of cerebral palsy. The neurologist does not believe he will be confined to a wheel chair. He WILL walk, run, play, jump, etc. But, he might be a little clumsy doing it. It could also cause him to have a delay in walking or reaching certain milestones. She still believes that Hunter will walk long before he starts school. But, instead of walking at age 2, it might be age 3. When CP is mild like Hunters, he could overcome it all together. He will always have the diagnosis. But, you may never know it if I didn't tell you. This diagnosis will open up the flood gates of help for Hunter. Hunter is being referred to a rehabilitation doctor. In addition to the physical therapist comes to my house, Hunter will see another physical therapist that specializes in cerebral palsy patients.

A couple things about cerebral palsy: 1. it does not affect intelligence or cognition. 2. There are MANY different ranges of CP. Cerebral Palsy is not always the “poster child” in the wheelchair. In fact, it is very possible and common that children have CP and you would never know it. I think this is Hunter's category. At least, I hope. 3. Cerebral Palsy is not progressive. It will not get worse. It is what it is.

Sometimes I feel as though my inner strength is being tested. I have to admit this has sent me in a whirlwind. Yet, I still try to remain positive. I made an oath in the beginning that I was going to fight, alongside Hunter, through this damn prematurity and all that comes with it. And, I still will do this. Hunter has overcome so much already. I'm convinced that with everyday stretches, the assistance he receives from the doctors and therapist, and the work I do with him at home, Hunter will overcome this. It will just be one more miracle to add to his plate. So, now we stretch every day. Hunter's Cerebral Palsy is in his legs only. His official diagnosis is “Mild Spastic Diplegia”. He has normal muscle tone above his hips. I do have many things to be positive about. It could be SOOO much worse. At least, he was diagnosed and his help can start early in life. There are treatments for Hunter's mild case of CP. The neurologist said that the rehabilitation doctors will discuss Hunter's options. A lot of unanswered questions still, but if he was going to get CP, this sounds like the best type to get - a very mild form.

I will still say this over and over again. Prematurity sucks! It is heart wrenching! Please pray for Hunter that he overcomes this. Hunter's first steps are going to be a huge celebration! He WILL get there! I will make sure of that!