Wow, its been a while......

Not too much to report these days which is a nice surprise.

Avery saw hematology on Wed. I was actually surprised to have walked out with an explanation of things. They had charted his hemoglobin/hemocrit for the last yr. It seems as though he has multifactorial anemia. Which basically means he has anemia for a number of different reasons: 1) chronic gi bleeds, 2)low epo (how the body makes red blood cells), 3) low reticking (he is not making enough red blood cells, 4) inflamnation of the kidneys, 5) the mito cells just don't have the energy to keep up with the red blood cell production.

So the question is, what to do about it??? We can continue with transfusions as long as he is not getting more than 6-7 per yr., He can start procrit (injections) which is more likely. I suspect he will need a transfusion in the next couple of wks. and we will probably start procrit after that.

As far as he reaction to the IVIG, my pediatrician thinks the respiratory issues where due to fluid overload with the infusion. She he is going to check on that and hopefully we can have a better pretreat plan in place for the next infusion in a few wks.

Sadly enough, I also just ordered a BIG BOY wheelchair for Avery. It will look just like Isaiah's. It is just so hard to make that transition. He is no longer a baby but a big boy who needs better support. It will be a matter of time before we are forced to get a handicapped accessible van. UGH. But I think we will need one within the next yr. or so. It will be impossible to fit both wheeelchairs in the van. I am going to have to use Avery's stroller for now. Just would have never though that I would have 2 of my 3 kids in wheelchairs. :(

Isaiah is out of school for the next few wks. He is going for his tricycle trial next wk. Trying to keep Ness busy as well.

That's it for now. Oh and since Rick got home I have put his butt to work at home :)