Friday, July 26, 2013

Update On Bryce



Because 80% of babies diagnosed with Spinal Muscular Atrophy die from it before they turn 2, those in the medical profession act "almost like they're waiting for her to die," Amy said.  "I know that's a cruel thing to say, but she's not just a statistic.  She's a person.  She needs just as much of a full life as anybody else does."
http://www.our-sma-angels.com/lily/

The SMA community is a huge resource for me - strength, hope, support, and similar stories.

Lily's mom is right - this is exactly what happened during our June hospital stay. I have had to learn more about getting records and documentation to the providers. This is happening though and they are starting to review and have everything updated into his file at the hospital.
 
 


Since April, I began the AA diet, using low fat, low protein smoothies, a balanced set of food groups and supplements recommended for children with low muscle tone. Our home care providers delivered the prescribed Pediatric Vivonex to our home.  From May to June, Bryce recovered from his illness but we faced many challenges - on which has been his breathing. He had a great recovery and was doing much better-  There has been signs of decline over the past month. I hope he continues to gain strength.

 I still wonder which is better. High fat high protein such as the soy or the AA diet vivinex that I had him on.

video
Video taken this week
 

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