Yesterday started out as a rough day, with Idan continuing to have episodes of pain and general discomfort, but a great idea from our friend Ashley got Idan out of his room and bouncing happily down the hallway (see last post for a cute video of Idan playing a real life version of his favorite iPad game, Osmo, that he got as a birthday present from his grandparents). We passed by Idan’s doctor in the hallway who was very happy and surprised at Idan’s energy. Note: Always good when the doctor is smiling.
He continues to shed hair everywhere. Most of the long darker hair is gone and he is now left with a blond peach fuzz, which is very cute.
Today, Idan has been full of happy energy and it feels so good. He received a special surprise today in the form of a Hyper IgM Foundation tote bag filled with goodies. For the last two years, he has excitedly helped us pack care packages for boys around the world undergoing transplant for his disease, and today he got his very own. For a child who has lived the challenges of dealing with an extremely rare disease, it was a nice reminder for him that there are other little boys who are just like him. He is not alone.
Idan is in a great place for the moment, and now we wait to see what happens when his cells start to come in over the next few weeks and months (his blood tests currently show “no data” in the white blood cells). To quote Idan’s favorite author (Mo Willems), “waiting is not easy,” but with any luck, it is worth the wait.