I know it has been a while, but I just didn't have the energy, or maybe the will, to write.
So now, I am in a wheelchair. I have gotten strong enough to stand on my own and walk a few paces, but I cannot really walk. I can't walk in the store or in the park. I cannot go on walks in the woods or on the beach- this is what made me. I felt whole in the woods, on the beach, in the mountains, by the river. Now I have lost a great piece of myself. I may not get out of my wheelchair. I may never be able to feel that peace again, to loose yourself in the woods. I have not been able to do things on my own and when I have tried, many times I have ended up falling and unable to get up. I continue to have difficulty breathing and headaches.
No one knows why I am losing phosphorus. Not one doctor that I have met so far has ever had a patient that looses phosphorus. It is extremely rare. So far I have gotten shrugs and pass offs.
When I get stressed, overwhelmed, or emotional, I buy books. So I have quite the toppling stack by my bedside.
Layne has had his sleep study. He did better than I thought. He wasn't a fan of putting on the monitors, but once they were on he was okay. He particularly didn't like the pulse oximeter on his toe and had a hard time falling asleep from being annoyed by it. He ended up sleeping fairly well. We won't have the results for over a month.
He got a particularly special present on the way home- life sized Woody, Buzz, and Jessie.
We have decided to keep the micro house. We put so much time and thought and soul into building it that we can't give it away. It will be Layne's school house for now. And maybe someday we can live in it. I think we could work with the laws here to make something work, but it would be a lot of work, and I just don't have the heart and energy to go through that right now. Raising a boy and loving my family is enough right now.