Today is the first day of the rest of your life

This is the first post in an effort to record the ups and downs of our experience with our very special little girl, Chloe.  Jessica and I (Bobby) will both be posting to this blog as we have things to share regarding our battle with Rett Syndrome and how it affects our lives.  Occasionally we will share specific ways you can pray for us and offer other help in an effort to give our daughter the very best provisions for a healthy, happy life.

With Rett's, there are four stages that the average girl goes through.  In the first stage she develops normally and hits all her milestones.  Then comes the second, regression stage in which she loses her ability to walk, talk, and perform normal motor functions.  Chloe is atypical (nontypical) and so far, not in a good way.  Chloe hasn't hit any milestones on time like crawling, walking, talking and feeding herself.  She has the handwashing, wringing, clapping patterns of debilitated motor function and the regular frustrated screams that would come at a later stage with a typical Rett's case.  When we first learned that Chloe has Rett's, we were pretty discouraged knowing that she was already so far behind and faced regression in the future.

Even so we have much hope for Chloe's progression.  Recently a local church donated an Ipad2 to help Chloe learn basic cause and effect and eventually it will serve as a communication and learning tool.  It would have taken our family a long time to save up enough money for this piece of equipment and in that time we would have missed a crucial window in which to take advantage of Chole's functioning before the regression sets in. Thanks to the generous gift of our community we can begin working with her now in order to help her function as much as she can before the regression phase comes.  It is really a dream come true.  In the same way we will serve through this blog in sharing Chloe's story with the world, the Ipad may very well be her voice to us in the future.

We are learning so much about Rett Syndrome.  Jess is completely consumed with books, medical journals, websites and other literature on the subject.  She is working so hard.  I have been a bit flighty during this time, not really wanting to face the reality of our future together.  I created this blog today as a first step in the direction of using my time more wisely to face this thing head on.  Chloe is worth all my spare time and more devoted to understanding her disorder as best as I can and working to prepare for the future and all of the ways we will need to meet her special needs.

This blog will be our outlet to document and share with you all how the family is doing.  Hopefully it will also serve as a source of hope for other families that are facing a future with Rett's.