Physical Therapy and more

Rett Syndrome presents many challenges for Cata but one of the most interesting challenges to me has been finding good physical therapy (PT) for her. Because she is ambulatory and gets around fairly well, she seems to not "need" physical therapy. The challenge is that she gets around fairly well if she does not lose her balance, if her brother does not run up and give her a hug knocking her down, if another kid doesn't whiz by throwing her off balance, if she does not need to sit down on a chair or the floor, if she does not need to stand up from a chair or the floor, if she does not need to go up or down stairs, if she does not need to walk on slippery surfaces such as pool decks...the list could go on. So yes, she can walk from point A to point B without falling as long as nothing is in the way to challenge her balance. We are so thankful that she does have the mobility that she has, but also want to help her so she doesn't fall as often. She is getting increasingly frustrated with falls so it'll be hard once she is in school in the fall and gets knocked down constantly or trips on toys left on the floor.

So in comes a new physical therapy, something called Cuevas Medek Exercises or CME. The whole philosophy is to improve stability and balance. It has really worked wonders for some individuals who were not walking and with intensive CME are now able to walk. So our hope is that with this therapy our already ambulatory Cata gains the stability to have better balance. The therapist (who is awesome!) doesn't see Cata as someone who doesn't need PT, she sees her strengths but sees her major physical weaknesses and has thoughts on how to challenge them. She works to wire connections to Cata's brain so that motor patterns develop in a new way. Maybe she will be able to stand up from the floor when she feels like it, or maybe even take steps downstairs? Who knows. We are excited. Here are some videos of her working hard (and not always loving it).

In other news, Tomas just keeps growing up! In the last week his vocab went from mama, papa, and ball to adding hi, bye, up, out, hat, boom, uh oh. I don't have any videos of him or really any new pics, but I'll post more soon :)

And back to Rett Syndrome, the research that is being done is amazing. More labs around the world are taking an interest in MECP2, the protein that is not encoded properly in Rett Syndrome. As with all things though, funding the research is always a challenge. There are 2 competitions that could win money for Rett Syndrome, so if you have the time, we'd appreciate you voting and spreading the word! They are:

1) http://www.refresheverything.com/rettresearchtoreality. Pepsi will donate $250,000 to the #1 and #2 projects. International Rett Syndrome Foundation is currently ranked #8. You can vote for this every day until June 30th (although I believe that those who land #3-10 get to run again for hte month of July). When you go to the site, you have to register. Each time you will need to log in and then you have to hit "vote for this idea" a second time since the first one only allows you to login, doesn't count your vote.

2) Through facebook you can vote at http://apps.facebook.com/chasecommunitygiving/charities/208011668-girl-power-2-cure-inc

Chase is giving $250,ooo to the charity with the most votes by July 12th, $100,000 to the next 4 charities, and $20,000 to the next 195 charities. Girl Power 2 Cure is a nonprofit that raises awareness about rett and also raises money for Rett Syndrome Research Trust

Thanks for your continued support. I dream about the day that Catalina can use her voice to thank you personally.