Well, there is less than 1 week remaining in Casey's 40 hyperbaric oxygen sessions. We have seen a few little changes over the past couple months. She is now able to take the occasional bolus feeding (sometimes up to 80cc at once), crinkles the corners of her month at times, and even managed to flip herself all the way over onto her stomach one night last week. We're not sure how she did this, as no matter how much she arches her back, her leg stiffness usually keeps her from rolling very far, but she found a way when we weren't looking.
More than anything else, her crying has gotten much louder since HBO started - hey, this wasn't in the brochure! :-)
As many of you know, we have been researching stem cell injections for Casey for a number of months. When most people hear stem cells, they immediately think embryonic, but significant progress has made treating patients with stem cells derived from umbilical cord blood, which is what we plan to do. Casey will either receive a shot or get the cells IV, both of which have specific benefits. A more invasive (and more effective) approach of inserting a needle directly into the brain is not quite mature enough for us to consider for her.
China and Mexico are the leaders in this type of treatment, and due to the logistics of traveling with Casey, we have decided to go to Mexico. Even though this treatment is not available in the US, the doctors there work closely with a research institute near Los Angeles to track progress, and the stem cells themselves even come from FDA approved labs right here in the US. It seems ridiculous that the US will create and sell the stem cells, and also allow US doctors to participate in the management of care, but make the actual injection for neurological treatment illegal (stem cell treatment is approved in the US for many other conditions, such as leukemia). In any case, we have to accept this is the current state of affairs and work with it.
We are targeting the end of January for the first injection, as we want to get through the holidays and then also have orthopedic and GI procedures pending in the next month. We will post an update when we have more info on any of these.
We want to wish everyone Happy Holidays and thanks for all your support this year!
Love,
Casey, Tim and Marty
