Friday, August 23, 2013

Decisions Decisions

There is so much positive going on the Prader Willi Syndrome community.  There is phenomenal research going supported by parents and loved ones of those with PWS.  There are new ideas coming along all the time.  There are support groups for those who need help with every thing from and IEP's to insurance to a place to scream and be heard to just sharing of ideas as parents.  All great stuff.

As the parent of an amazing child with Prader Will Syndrome I can say I love all the hope that I can see, even if it sometimes seem a little to far in the distance for my liking.

Here is the challenge.  With so much information and varying opinions and ideas, how do you sort through it all and decide the path you want to take?  Which supplements?  How much of the supplement?  Do I count calories and monitor food intake that way?  Do I follow a low carb diet?  Is low carb enough or should I go all out Ketogenic?  Should we eat on a schedule?  What if she is not hungry at the time the schedule says it is time to eat, still feed her?

I guess the question is how do you balance doing the most you can for your child and yet, not lose the time with them just being mom and kid.  You know, just typical, non analyzing, no playing with a therapy in the back of your mind, silly, pointless fun.

Oh yea!  Balance... some days it eludes me.

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