Saturday, April 20, 2013

William's Journey April 8. We have had a few good weeks. They have been emotional, but William experienced no significant decline. He is not sleeping as well as he had been, getting up around 2 a.m. It’s different than before because he is not agitated nor crying, but just “talking” and very calm. I could let him stay in bed, but I haven't. I go to him because I can’t stand the idea of his being awake and alone. However, I will need to sleep soon, so he might have some mornings without me. William is also losing neck muscle control. His head leans to the right. This was expected but it’s hard to see, and he has stopped walking all together. We got a new gait trainer on Friday, and he took several steps in it! It gave me chills. I was so happy for him because I could see the excitement in his eyes, but it was sad at the same time. Tomorrow we have a neurologist appointment at Arkansas Children's Hospital. I am giving them one more chance. I have switched doctors (again), so we shall see. We still have our St. Louis doctors, but it would really be nice to have someone close for emergencies. Arkansas Children's Hospital Neurology Department has let me down too many times. If they aren’t responsive tomorrow, we will try Le Bonheur Children’s Hospital in Memphis. William is a complex case. A doctor can’t prescribe his medicines and not expect to hear from us for 6 months! No, we are lucky if we only talk to our neurologist once every 2 weeks. There are always new occurrences and constant monitoring, and most doctors are not very accommodating as phone calls are non-billable hours. I know it’s sad, but that’s how things work. We are grateful for our doctors in St. Louis, but a 5 or 6 hour drive is really too far as William’s condition continues to deteriorate. Wish us luck! Braley

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