Saturday, October 27, 2012

Bryce's SMA Awareness Video and his Care Plan

Bryce Noah Amiel: Born January 26th 2012 - Diagnosed with SMA -1 at 9 months -

This post is temporarily being revised.

2014 SMA Awareness Video

                                           Byce's 4.5 year old video - Easter Egg Hunt 2016

                                                         Living with SMA - Our Story -

Today, Bryce is 4.5 years old. Doctors told us he would not live beyond the age of 2.
I believe my medical choices and home care "keeping him busy" and working with a variety of medical professionals and my home health team along with friends from Church and our faith, has given us the strength and ability to fight this horrendous degenerative disease.
SMA- Type 1: Dr. Finanger - Primary Provider - Neurologist

  In 2017 we may consider the magic rod surgery. Until then, we are still consulting with providers and parents. Its very important to maintain Bryce's quality of life - sitting up allows him that quality of life -
2016 - Bryce drives his power chair as much as possible, we have other sitting chairs for him - He loves me to hold him also - I know those days are coming to when it will be more difficult to hold him -so I do spend a few times a day holding him - reading a book play, talking, sometimes looking in the mirror we have in the front room and making funny faces.


1 comment:

  1. Me and Erik watched the video together and he smiled and waved at Bryce laughing. Thanks for keeping up with the blog, he is so adorable! Love Lotta, Ty and Erik.