Exhausted and running on E …. Baby Nicholas hasn’t been sleeping well and we haven’t figured out his feeding schedule that works for us yet. Oral meds upset his tummy and he’s just so unhappy. Endlessly walking in circles around the Target House and on the grounds. Nick took the baby to the Medicine Room (which is like ER for St. Jude) To get his blood levels to make sure that the Methotrexate (chemo drug) had cleared his system. Today he cleared completely – PRAISE GOD! (always praising God for the small things) This had us a little worried because after surgeries like his sometimes this drug will stay in the hidden in the brain because of swelling. So it was great he cleared so quickly.
We are happy to have round 1, week 1 gone …. But the reality is that we can’t put Baby Nicholas down at all, he sleeps in bed with one of us while the other sleeps with Christian and we switch when he wakes up. During the day he either needs to be strolled or be needs to be held. He is finally gaining back some strength to sit up but he can’t get into that position like he use to because of his G-tube, it hurts him and he cries. It’s so frustrating because he doesn’t understand why it hurts or why he can’t do what he use to.

Dear God,
Please heal Baby Nicholas’ swallow – heal his throat God ….. so that after chemo we can get rid of this G-tube. Please heal his vocal cords completely. You are the only one who can Lord… so please, please, please heal our boy – mind, body and spirit.