Saturday, June 15, 2013

Shriners and Newest News

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.

Today and yesterday Bryce has been dropping to  95 on his pulse ox - throughout the day. Thus, I am now doing the cough machine 4 times a day. I will be seeing the pediatrician Monday for follow up. I have been instructed to go to ER if he drops to 93 consistently and doesn't come back up to 99-100.

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 -



  1. Thanks so much for the update Jenni, you're doing a great job with the little man. I know how hard it is to keep up what you're doing, but you're are giving Bryce so much love and that is what quality of life is all about. You're doing great and Bryce's ever-positive smiling face is a testament to how good you are all doing. Much love to all of you.

  2. The love you have for your son bring tears to my eyes. If only every child could feel the love and care you give to him the world would be a much better place. You are truly amazing Jenni. A truly amazing mother and person. Be proud of everything you are doing and the amazing life Bryce has.