50 minutes ago
Monday, June 15, 2009
A world of possibilities
This weekend, the future seemed filled with possibilities.
Here's Max, playing with his new tennis racket, and Sabrina, showing off her mastery of hissy fits.
Lately, Max is into all sorts of new things—baseball, tennis, swimming. As he's become more sure-footed and has gained better trunk control, he's more willing to try sports. Grasping things is still a major challenge, even with his left hand (the more functional one) but hopefully, better hand control will also come along. One thing I have learned over the years is that, when it comes to Max, there is no time limit for accomplishments. In toddlerhood, when everything seemed laser-focused on developmental this and developmental that, it was a hard thing to accept. But now, I know that we have time.
Last week, I told you there's a possibility we might be able to get Max a stem-cell infusion. Here's what Max's pediatric neurologist e-mailed me when I asked him about the program at Duke University:
"I am quite aware of the program and have had some kids go down to participate. I have not recommended it to anyone yet because I am waiting for results in the kids I treat. I have not seen anything bad, and perhaps a bit of good. So, if they judge his cord blood 'eligible' there would not appear to be any harm in trying it, but there are not any clear parameters that I have seen to judge the effectiveness of the treatment."
Of course, I e-mailed back right away to ask what he meant by "a bit of good," and this is what he said:
"As for the good, a bit more attention and focus, and a slight improvement in motor capacity, but perhaps it is too early. If you look at the cases that have been reviewed in the media, perhaps there is more to be expected with time. The numbers are not sufficient yet, however."
No matter, we are ready and willing to try this. This week, Duke is mailing us a kit to get some blood samples from Max, they need to make sure it's still a good match with the cord blood we've banked.
In case you are wondering, the procedure would cost around $10,000. I haven't yet called the insurance company, I highly doubt they will cover this as it is experimental and, as you know, I have battled them to get them to pay just for speech therapy (and still am).
Dave remembered that when he called the cord blood bank after Max was born, he was told that the sample they had gotten was excellent, filled with viable stem cells.
Yes, the world seemed filled with possibilities this weekend. What possibilities have you been dreaming of for your own child lately?
Posted by Ellen Seidman at 12:02 AM