Reese Turnipseed

Sunday, April 3, 2011

4 and 1/2 years after diagnosis...accepting what is! (Jason and me - that is). Reese will always be physically challenged. But, her attitude, spirit and determination will carry her through! She will do whatever she wants, irrelevant of these challenges. And Jason and I will continue to try to have as much strength and courage as Reese does! She will teach us about the unknown territory that we are scared of - and that she is fearless about! Updates : considering getting a power wheel chair (BUT NOT A MINI VAN), Kindergarten (inclusive phsycial disability program) starting in the fall, adaptive skiing with a walker ski and PLAY DATES!! And a break from therapies.

MORE ABOUT REESE & GA1 -

Reese was the 1st Colorado baby to be caught with ga1 at the expanded newborn screen (NBS took effect July 1, 2006, Reese was born August 2, 2006). In theory, if you catch ga1 at birth, it can be treated through diet and medicine. Unfortunately, because of how rare ga1 is, and how little they know about it, Reese was still 'affected' even though she did not have an apparent 'seizure/crisis' (which is usually the cause of the problems). We treat Reese through a low protein diet, a special formula & medicine. It is also important that Reese (and kids with ga1) go to the hospital when she is sick and is not keeping hydrated. This allows her to get hydrated through IV and get the treatment she needs to prevent any further 'damage'. But, as the affect & damage is to the brain, and the brain is mostly developed by age 2 and 3, kids are not at risk for damage after this age, even though treatment with diet and medicine, continues for the rest of their lives.

Reese Turnipseed

Sunday, April 3, 2011

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information on glutaric acidemia