Saturday, May 26, 2012

Day +49

Time keeps marching on. I can't believe tomorrow we will be half way to Jacob's 100 day mark when we will hopefully be able to head back to California!

Jacob's hair is growing back and so far it looks like it will still be blonde. It's really short, so it's hard to know for sure.

Jacob has been really tired, some times requesting two naps a day. All he wants to do besides eat and sleep is watch Curious George on Netflix. The doctor said fatigue is a normal part of recovery. J's also been eating a ton because of the steroids. He has been off feeds for about a week and is maintaining his weight on his own! He is still getting extra iv hydration at night because his kidney function has been a little off from all the medications that he's on. Hopefully we will get to start peeling back some of the meds soon. Another issue that has come up this week is a rash on the palms of his hands, classic gvhd. It doesn't seem to bother him and we have been treating it with ointment. In fact, the ointment bothers him more than the rash. :)

Praying for his kidneys and liver to handle all the meds and for his gvhd to clear up so we can continue on his steroid taper schedule. Also, Jacob has another chimerism test on the 31st, so we are hoping and praying that his graft is holding strong and even increasing in its percentage. Maybe the gvhd on his palms is a good sign for the graft? We will see.

Here are pictures of the palm rash and his cute fuzzy hair growing in.

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