Labs and X- rays

I hope everyone is having a blessed week so far.  Things our way are hectic as usual, back to business.  Monday we had to go to the lab to get some more blood work done to check on LJ's tacro and sirolimus levels.  His tacro was still low, thankfully not as low as it has been before, which was undetectable.  We are getting there, slowly, but surely.  The doctors in Boston called yesterday to say that they wanted to increase his Prograf (tacro) dosage, and repeat labs at the end of the week.  I swear we live in the lab.  Hopefully this time we will be on target.  I hate seeing my little soldier get stuck so much, but I tell you, he is definitely a soldier.  He doesn't even cry anymore when he gets his blood drawn, and they take it from the back of his hand.  I even cringe when they do it.   He prefers it there though, which is crazy to me, but whatever is easiest for him is what it is.  We'll see how that goes on Friday.

We had to go get his back check out because when he had an x- ray at the pediatrician and found out he had RSV, they also noticed that his scoliosis was getting worse.  When we  got to the Orthopaedic physicians office, they took another x-ray.  Of course, it confirmed that his curve was in fact getting worse, which is just another scary thing for my baby.    It's so crazy to me to think that his back used to be completely normal before he had his transplant, then after we come home, suddenly after all that growth, he has a curve.  It's like a blessing in exchange for a curse.  You take the good with the bad I guess.  It's really all we can do.  So now we are exploring options.  We discussed some of the possibilities before, but we were kind of hoping that the curve wouldn't get so bad, so fast.  Now, we are at the point were we are going to try bracing.  He will need to wear it most of the time, but it can be taken off so he can get in the bathtub.   Casting would be the next option, and that would have to be on him at all times.  Of course, surgery if it gets extreme is the last option, which I hope we never get to.  I have a brother who had a rod put in his back, and he is in constant pain because it broke.  I never want my son to go through that on top of everything else that he has to deal with.  So for now, we are going to try to see about casting.   First he has to get an MRI to make sure there is nothing going on with his spine that can be helped before we move on to other options.  It would be a miracle if there is anything that can be done to help stop the progression of his scoliosis.  If it were to stay at the point it is now, he could live with it, but the likelihood of that happening is slim to none, especially as fast as it has been curving already in less than 2 years.  The brace will hopefully keep the curving at bay, it wont improve it, but at this point, it's all I can really hope for.  The sad thing is, bad things continue to plague my baby that can't be explained.  I always ask God, Why can't he have a blessing that can't be explained?  I guess, the fact that he is here at all is blessing enough.