Anniversaries

As we move closer to the three month anniversary of our little vacation in the PICU, we also have another thing to celebrate. After 90 days has past the boy will have his own blood again! Because of plasma and blood transfusions he has basically been running with someone else’s blood pumping through him. Stop and think about that with me. For three months…. you have MULTIPLE people that have helped you live. I have never been able to give blood before, I was too scared. But now even though I am still freaked out by needles and the idea of it I will. I hope that you will consider a donation as well. I know fully understand the idea that it does save a life.

The rheumatologist told the boy in the PICU that until the new year he couldn’t do any testing. He said, “I’m testing somebody’s blood for a disease...but most of it isn’t yours.” I wasn’t in the room at that point. I missed a doctor visit! Not sure how I feel about that, but the boy remembers better than I do what some of the doctors said. I’m blessed to have him.

But that statement had a major impact on the boy. He didn’t quite know what to think about the fact that there could be 8 different people’s blood in him. I don’t think he has come to grips with that yet, I know it is on his mind because he reminds me. Oh… and now that there is a diagnosis and things are improving with the meds we don’t need to go to any other specialists. YEAH for less co-pays!

We also learned that the boy has what is called hyper mobility.  Think double jointed, but a little weirder. What makes it different? Well it is in his hips and shoulders. For anyone who has ever seen him wrap his arm around his head and hold his own chin all freakishly…. NOW we know how he can do that.  Does it hurt? Nope. He has his own built in parlor trick. Long term, sure he could get some aches and pains from it. AIH causes the same aches and pains. So… damned if you don’t, damned if you do.