Mom Hijack: Stem Cell Treatment Update

Lots of people have been asking when we find out about Kai's stem cell treatment- whether Kai got the stem cells or the placebo. Well, we finally got the call! After just under a year of waiting, the nurse coordinator, Steven, called to schedule Kai's 1-year follow-up visit. We will be heading back to Texas at the beginning of May for an MRI, xrays, blood tests and physical motor evaluations. I was informed that Kai did in fact receive the stem cells at his first visit last May. So, to all of you who crossed their fingers, said prayers and sent positive energy- Thank You! We got what we wanted.

Interestingly, over the past few months, I have been hoping to hear the opposite- that we didn't get the stem cells. Even though I knew any changes would be slow, gradual and small, I still haven't seen anything that I can pinpoint as such. Of course, I see Kai every day and may miss something that could come through on the testing.We still have another year of monitoring to see if any changes occur as well.

When we saw Dr. Cox six months ago, he told me that they would expect one of three results from the treatment:
1. Noticeable changes in function and in brain structure (MRI).
2. Noticeable changes in brain structure only, but not in function.
3. No change

So, it will be interesting to get the results of these tests to see if there is a difference in Kai's pre and post MRIs and if the other evaluations show any change that we are not seeing. Kai is only the third child to get to this point in the study. It will still be a few years until they have any data/results to share. We will go back to Texas one more time in 2016 for our final evaluation. Hopefully at that time they will have more information to share about how other children progressed in the study, and we may see some changes in Kai that have not manifested yet.

Now that we have made it this far, we need more crossed fingers, prayers and positive vibes. It is important for the CP community to show some change/gain from this type of treatment, even if it may be small. If this study shows enough promise, it will encourage the researchers to expand the study, changing some of the factors and continue working to find ways to help our kids. Without any statistically significant results the investigation will likely end here. There is no federal funding for CP, so finding researchers interested enough to find outside funding sources to investigate treatments for CP is difficult. So say a quick prayer that something changes for enough kids to show viability for this treatment.

We feel very honored to have been part of an important medical advancement such as this and are happy that Kai continues to have a positive attitude and sweet disposition. He truly is the Ambassador of Happiness! We are looking forward to the next year in hopes that there are some gradual changes for him.

Happiest Kid on the Planet

This Month is Cerebral Palsy Awareness Month, and next week on March 25th is CP Awareness Day. If you think of it, wear something green to show your support for the 17,000,000 people afflicted by CP worldwide, approximately 800,000 of which are in the US (Statistics from Reaching for the Stars, 3/17/15).

If you are feeling extra generous (or maybe need a tax write-off;-), consider donating to either of these organizations working to get more research money for CP:
Reaching for the Stars
Let's Cure CP!

PS: Thank you to everyone who made being part of this study a reality for Kai. We could not have done it without the donations and support from family, friends and kind-hearted strangers.