Well, I've been putting off posting about this for nearly three weeks. I am still struggling with the results of Fletcher's MRI and I am really not sure that I understand what's happening to my sweet boy. It's one of the main reasons I stopped to blog about the Lord's faithfulness because I needed to remind myself of all that He's done for Fletcher thus far. One of the first things that the MRI showed is that Fletcher has bone overgrowth in his skull. The overgrowth has 'obliterated his para nasal sinuses', now we know why his nose runs constantly. They are worried now about his optic nerves and his ears wondering if the bone growth will cause hearing and sight problems. They do not know when or if the bone growth will stop. And the hardest news of all...the MRI also showed that Fletcher's brain has atrophied. I just don't get it. I have just recently let my guard down about my dreams for Fletcher's life. He is tolerating (very well) the weaning of steroids, methadone and valium. I honestly thought our next big thing would be conquering the ventilator, knowing that could take years, but that was okay with me. But now, his future is uncertain. I guess it really always has been just like mine and yours. Two weeks ago we went to the dermatologist, he's one of the few doctors Fletcher has that knows anything about Epidermal Nevus Syndrome (ENS). When he was reading the MRI report he told us that all this goes hand in hand with ENS and so does the phosphorus problems. Wherever the nevus is the overgrowth of bone can happen, well most of the nevus is on sweet Fletcher's head, thus the misshape of his head. Also they believe his eyes are protruding because of the bone growth. At this point, no one really knows what to do, so they are researching and educating themselves on ENS. We are working with Fletcher's endocrinologist to help get his electrolytes back to normal. The dermatologist is seeking the advice of one of his colleagues to find out how we can help Fletcher and maybe have some kind of idea of what to expect. We are also waiting for a meeting with the neurologist to see what he has to offer.
As I'm sure you can imagine my heart is breaking. I'm struggling with how to pray. Do I pray asking the Lord to stop the over growth of bone? I know He can do anything, but will He? I'm afraid to ask. I'm afraid to pray for His perfect will, because I'm afraid it won't be what I want for Fletcher. I keep having these conversations with myself. Telling myself that perfect love cast out all fear, telling myself that His ways are higher than my ways, telling myself not my will but Your will be done. But still I'm afraid. I'm afraid of what the future holds for Fletcher. When they gave me the news about the MRI I said to myself, 'this is the worst news EVER!' Then I reminded myself that the worst news ever would be Fletcher not being here with me. Please pray for Fletcher and for Craig and me. We've decided to just enjoy Fletcher and take each day as it comes. That's all we can do for now. He's such a sweet boy. Today I took a few pictures of him while he slept. Craig also took a picture of him playing tonight.