Joel's "trip in truck"

Some of you have asked me how Joel is doing. It's kind of hard to explain. He is more medically fragile than before, ever since he was in Congestive heart failure in Feb 2011 and had to have a larger artificial valve put in. His lungs, asthma and heart issues keep him from exercising very much, his immature chewing ability and extremely limited food choices add to his weight problem; it's a vicious cycle. He isn't growing in height, his weight goes up and down only a little, some is water weight. Cold and hot weather trigger his problems as do exertion and illness.

Joel was in crisis Friday by the time I arrived home from taking Timmy to the dentist, his PA alerted me by text moments before I got there. As the evening progressed he got worse and was eventually ambulanced to Children's from our local hospital (again), where we were finally able to settled in at 5:00 am to sleep. Joel needed a tune-up, and was then sent home again. Easter Sunday was necessarily a day of rest.

Here's the way it seems, the way I interpret what the doctors said: The new normal for Joel's lungs is abnormal; his heart has another stenosis, we learned about that last month. He's on oxygen on and off in the days, always at night at varying liters, along with his bipap.

There are days when I feel like sobbing in great bursts but I mustn't. I know that Heavenly Father knows the number of Joel's days and what he needs to accomplish here. I KNOW that, I have a testimony of it, the Holy Ghost has born witness of this to me. But it's very hard to see your child suffer repeatedly, and never know when it will strike again. He cries out in his exhausted airy voice when they're struggling to get an IV into his weary veins again, and quotes, "Gimme a chance!" or "It not fair!" and I'm standing there helping to hold him. I wish I could change things for him. I REALLY do!

Oh my Joel boy, little Mister, how we love you!