As Jodi related, last night we walked down the street from our apartment and went out to dinner. It is remarkable what a big deal this was. Since we had to work in a week’s worth of marriage in about an hour’s time, we managed to get lovey-dovey, get into an argument, spend a moment in silence, make up, laugh, discuss parenting, catch up on each other, walk back hand in hand. Nice. Thanks to Aunt Rebecca for these stolen moments.
It was jarring to see JT after a few days away. He looks so different. The girls posted new pictures last night, and if you toggle back and forth between the first pictures of JT, taken in late October, and one of the pics taken last week, you’ll be jarred too. I keep going back to something one of the doctors told us a long time ago: “Bone marrow transplant is a terrible treatment for terrible diseases.” JT has done remarkably well and God has been remarkably merciful but this process has still been hard on his little body.
And speaking of remarkable, that big face of his is almost always beaming, laughing, or smiling quietly. I know I say this a lot but JT has a gift for celebrating each little detail of this radically sheltered life he’s living. It’s obvious that he’s not spending any of his energy on self-pity. He’s always telling us how his immune system is getting bigger, how he’s feeling better every day. I find myself lost in admiration all the time.
Today was a busy one. Aunt Rebecca made Valentine pancakes and they decorated the apartment with red and pink hearts. We drove around the sculpture park and he even got out and walked around for about five minutes. The Christmas tree finally came down. We saw a bunch of deer at the park this evening. Lots going on.
It was also a great day for calories (we’ve shifted our focus from bites to calories.) He’s taken to the Carnation drinks – he drank two yesterday and three plus today. Tomorrow’s goal will be four and he should hit it no problem. That would be 1000 calories – if he takes a few swigs of whole milk along the way he’ll be right in the neighborhood of 1200, his ideal number. He didn’t anything solid today, even the heart pancake but that will come in time. For now he’s free from the feeding tube/bags/pole/pump and he ain’t looking back.
It’s striking how quickly he gets tired and how profound this exhaustion seems once it sets in. After walking for a few minutes outside today, his legs went to jelly – I had to carry him back to the car and he fell asleep on the way home…tonight he was so tired that at 7:30 he couldn’t even sit up straight on the couch. He is always happy to see Jodi and me together and he was thrilled to hang out with Aunt Rebecca…it was all a little too much for him I think. Tomorrow we’ll do more reading and watching shows so that he can regain some of his energy.
I need to regain some energy tonight myself so I’m out. We continue to ask Jesus for complete protection from any illness or infection, complete protection from Graft-Versus-Host-Disease, and for a strong and enduring engraftment. Thank you for reading this and praying for our family.