Reading, Studying, Research, and Phone Calls

Since receiving the diagnosis of Trisomy 13, I have spent a lot of time researching, and what I have found is far more encouraging than the statistics. I am amazed at all the resources God has placed before me. I have joined a yahoo group of other families with Trisomy 13, read 2 books by the leading doctors/researchers of Trisomy 13. I have also had the opportunity to have phone consultations with both a nutritionist and a geneticist who have both done research into diet and nutrition of children with chromosomal disorders.

Honestly most doctors (including our great team over in Ft. Wayne) have never cared for a patient with Trisomy 13, and all they know of this disorder are the statistics. Getting to speak to parents and doctors of survivors was extremely encouraging. That being said while Alegria will always have special needs, our hope is to do our best by the grace of God to help her grow healthy and strong.

We are now starting to settle back into a routine. While Alegria's care is certainly more consuming in many ways than caring for her brothers and sister when they were babies, it is certainly easier than it was 2 months ago :) Since changing out the PEG tube though, she has had an increase in reflux again (still not as bad as it once was), but I am strongly considering trying out a Tucker Wedge and Sling which is supposed to help alleviate the reflux.

We are certainly learning a lot, and we continue to see God's hand guiding and directing us each step of the way.

Jill