With all the "stuff" we have to do for the Grandlove-doctors appointment; lab work; equipment ordering; therapists who come to the house for him and everything else, it's not until I finally put my light out and try to sleep that the overwhelming sadness of the reality washes over me. I am a well-educated, caring woman and yet this reality is one thing that I cannot change. Our little guy is so tiny, that he's now back in size three diapers. The only thing that is large about him is the love that he radiates with his smile and giggles when we play games or he listens to his musical toys.
When he used to love riding in the car, he now screams in terror. Changing his diaper, brings the same results. Fortunately, we have a physical medicine doctor who listens and started a new medicine that should help his brain quit sending signals that he will fall into the universe when he's on his back. Keeping our fingers crossed that his world will not be so terrifying.
At Christmas it's the season of miracles, and boy would we love to have a really big one about now. Our little precious boy, who is a blessing to all, needs to be blessed with good health. In the meantime, we do anything that we can to make his world a happy place.