We went to Shriners on Thursday for our check-in with our neurologist. Its time to start going every 3 months. They took and ex-ray of his spine and its time to get fitted for braces in August to keep him more upright when sitting. This will help reduce early scoliosis, but these kiddos usually are high risk for severe curvature of the spine. At this time, it was confirmed as I suspected) his breathing muscles and retraction never fully recovered since our last hospital trip. Also he sounds junky much more. His tongue is vibrating more as well, and this of course is sad because it confirms his continued loss in neck control, eating and swallow muscles. Bryce is significantly stronger on the right side of his body compared to the left. I have to keep up on massage and activities to keep the left side moving as atrophy may beginning to set in on that side of the body. We will follow up with a Barium Swallow study at Legacy Emanuel soon.
I am watching him so carefully these days. - keeping the house dust free as much as I can. His diet is pretty strict to help him stay regular also as straining to poo, really takes much energy and he isn't really strong enough to get it out. So this is another indication of degeneration, says the medical professionals
Again, please, come for play dates, call, email, keep in touch or just make comments on the blog to keep me feeling the love - Despite recent changes, I know my vibrant energy, amazing mother's instincts and passion for life is helping this kid tremendously- Quality of life is what we are striving for -