When it comes to my health….I ignore 99% of it. The 1%, is usually the kicker. I am down for the count until I can learn to listen to my own body.
Problem is, is that I do not have time or energy to listen to my own body because I have about 8 other bodies to be concerned about.
All that being said…my health is better because I’m learning how to take care of myself and I’m seeking guidance from our physician….when I’m there for another child 🙂 I’m sure that thrills my dr!
Then, there is Hunter….diagnosed with OPSOCLONUS MYOCLONUS SYNDROME, a 1 in 10 million condition. After, almost 2 weeks, in the hospital, last June….this diagnosis came. It has been 10 mths and we are not better then when we started. Everyday is a struggle for him. Everyday there is a new thing. Everyday, there is a new challenge.
Our dr was very kind to Hunter…he listened and responded to emails and calls. I felt comfortable that we were a team with the mutual goal of working towards getting Hunter in remission. Lately, however, I feel like it is me do my thing and he do his thing. I know that he is a good dr and I do not question the diagnosis…at all….I just want more. I want answers. I want to understand. I want it explained to me 1005 times so I will finally get it. I read through 1300 pages of hospital records. I took notes, made charts, asked questions of my dr friends and fellow OMS warriors. Yet, radio silence on our doctor’s end.
Somewhere along the line, I must have offended him. Maybe it was when I mentioned getting a second opinion because the last email I received had the words in quotes “OMS experts.” I must have ticked him off. That was not my intention. My intention was to get any and all eyes on my son…I believe that someone, somewhere, somehow, at some point read something that may be the key to his remission. If that means I keep up with a GoFundMe page and a CaringBridge page, and a Youtube page….I will.
See, the longer he is symptomatic…the more brain damage is being done and that is not acceptable to me. I want to prevent that, if I can. I want him to live a life that is full and one that he understands completely. I have 2 kids that have brain damage from FASD because of the choices their birthmother made. I don’t want another one. It hurts my heart, to the core to see him struggle to even hold a spoon or put a lego together.
I’m set to go visit another dr with Hunter this week. She is about 4.5 hrs away, so it is going to be an unimaginatively long day. We may get nowhere….then again, we might get somewhere. I have made it clear to her that I do trust our current dr. I do believe his diagnosis is current. I just want to see what other opinions/options are out there for him.
I hate to hurt feelings during this process….but this is not about me. It is not about our current dr. It is not about this lady we are meeting this week. It is all about Hunter and his future. I will do my best to move heaven and Earth and to get him the help he needs.
Please be in prayer for our trip…that it is safe and fruitful and that we will get some answers.