I wanted to share this picture of Nicky’s right hand a year post surgery. It’s doing fantastic! We do wrap the hand religiously and use the splint every night to keep the opening between the thumb and index finger intact, and while we lost a bit on the pinky, it is still ‘straight’, which means it does not pull the wrist inside, which is really great regardless. Even if it gets webbed again, as long as it stays straight Nicky does not mind, it’s the thumb which is most important for us to keep open.
I wanted to share this pic of the same hand 13 years ago (below), 2002 to be exact, just before the surgery he had back then. He was almost 6 when he had that surgery, and it was the last time he had surgery on that hand until last year. Without the wrapping and surgeries, as you can tell, he would have no hand. I know for some patients that is not a big deal, but it is with Nicky, so, as always, I oblige to his wants and needs. They are his hands after-all.
Nicky’s throat has completely healed and with that behind us we can now concentrate on his school and our mundane things such as infusions etc. I do hope he can graduate high school by next June, we’ll see. I did mention earlier that Nicky was accepted into the trials at Stanford, which he will participate once he turns 18 in late November. I have decided not to divulge any details as not to hurt the trials in any way. They did not forbid me to talk about it per se, and they can’t, but they did mention it could damage the research, so if you hear me talk about it, I will try to remain extremely vague on the subject until the official research papers with the results are published. I will keep a detailed diary on my own so I won’t forget anything. Fingers crossed it will all work out for Nicky!
Thank you as always for the kind words, God knows we need them!
Love & Light,
