pledged?

I've been neglecting this little space lately.  So right now I pledge (is that what you do… pledge?), anyway I pledge to write more often.  Twice a week at least, or maybe I should be realistic and commit to once a week just to be safe (we'll just see what happens). To be honest I know this lil nook really helps me process all of what's gone on and I want one day to be able to look back and have it all documented because all of the details and the emotions blend together after awhile and it's hard to decipher any of it.  

I know my thoughts gain clarity when I'm alone with them.  I haven't had much time to myself which is odd given that I feel so isolated.  Daddy and Grandma and Auntie are on rotation so that I'm not alone in this for too long but it wears on a Momma not having seen home (or anywhere really) for this long.  Not to mention not having a real break from my little old man and from all that comes along with this.  So forgive me for any confusion but here's my best attempt at separating all that's happened in the last several weeks…  

I'll start with the great news, we found out the results of Kiah's chimerism testing (engraftment analysis).  The donor cells have engrafted!  This means that the enzyme missing in his body is now being produced by the donor cells.  We are thrilled. 

In the past weeks we've been back and forth between the Ronald McDonald House and the Children's Hospital (mostly the hospital).  Been discharged a few times but readmitted due to random fevers.  Momma's heart stops every time the thermometer comes out.  Most of the fevers haven't amounted to anything.  He did however get something called PJP pneumonia a few weeks back and it had us really scared for a bit.  Thankfully he was started on an antibiotic and improved very quickly.  I am learning and comforted by the fact that the back and forth, up and down of all this is to be expected (you would think I would have caught on after 14 weeks in the NICU).  

The main difficulty Kiah is having is a skin rash that covers his whole body.  The doctors have determined that this is likely a form of skin GVHD (graft-verses-host disease - where the transplanted immune cells attack Kiah's own cells).  This is being managed by high dose steroids and topical creams.   Oh, and let me tell you, steroids and toddlers don't mix.  My lil monkey has turned into a wild ape.  Actually the whole primate thing is a good fit given that one of the drugs he is on actually stimulates hair growth.  He is quickly developing a mustache.  Really the hair growth is not isolated to just the mustache region… it pretty much covers his whole face and is working it's way down his body.  Interesting look given the bald head and steroid induced chubby cheeks.  Truly he pulls it off quite well.

don't let the smile fool you… ;)