New baseline

THANK YOU so much to all of you for continuing to pray and for your patience between blog updates.  Thank you also for those who are cutting and pasting my little FB updates into the comments for me.

Noah is holding his own.  He's not actively sick in the sense that he has no fever, the infection (he grew out MRSA in his urine AGAIN) seems to be abating, etc.  On the other hand, it's hard to say that he's actively living.  His new baseline is a hard place - he's very listless, and while he tries so hard to live and engage and play, he is seldom able to do so.  He'll ask to play on the Wii, but can barely hobble the few steps to a comfy chair in the living room.  Walking at all is painful for him and heartbreaking for us to see, but he doesn't want to be carried if he can manage at all to get there himself.  Even so, it takes a person to push the IV pole, a person to carry the drain bags, and a person to strongly hold and support much of Noah's weight for those few steps.

Once he gets to the chair, he's too tired to even use the Wii controller.  Before this latest illness, he'd actively play by telling a sibling what to do, and the sibling would control the Wii - now he just curls up in the chair under a blanket and watches.  He'll ask for toys in his bed, then be too tired to play with them.  It's just heartbreaking.

He still has little flashes of his former enthusiasm, and has short times when he will play with his toys, but they've become the exception.  As he gets farther and farther from this fever and the active phase of his illness, we keep hoping that he'll turn a corner, but he hasn't yet.

His swelling and ascites are increasing despite tripling his dose of lasix.  His liver numbers are shooting higher - should be around 30-ish but are over 1,100.  He needs a tremendous amount of care around the clock right now and we are all doing everything we can to give him the best quality of life possible. 

He remains eager to do something for other children who have mito, and we are working VERY hard at getting his foundation up and running while he can still participate and see what is being accomplished in his name.  We have a board of directors, should be incorporated by tomorrow and will have a bank account by Tuesday.  I'm going to try to write a post in a day or two outlining just what we are hoping to do with this foundation.

I could write so much more, but need to run.  Please just keep those prayers coming.  We are so, so tired right now but would gladly continue his grueling care schedule for a hundred years if it kept him here with us.

Blessings,
Kate