JT drank even more Carnation today, breaking the 1000 calorie ceiling and keeping everything down.  I hope that they’re as impressed as they should be when we head into the hospital on Thursday.  It’s not easy for him, but he looks me in the eye and tips back the Dixie cups.  What a boy.

He continues to hit a wall around 7:00 p.m.  I’ll be asking about this exhaustion on Thursday too.

Tired.  Tired.  Tired.  That about sums it up on this end for both of us.

JT kept his meds down today and took in about 40 combined ounces of water, whole milk, and Carnation drink.  He’s such a great boy – he’ll cheerfully do whatever I ask of him.

In addition to my daily three requests, please pray for protection against thrush – this is a fungal infection that tends to surface when kids are on long-term antibiotics.

Despite my intentions that this be a restful day, it wasn’t.  With Aunt Rebecca around to play with, JT simply burns himself out.  He hunted Easter eggs, painted pictures on the art easel, etc.  He will miss her energy and creativity when she goes.  Rebecca leaves in the morning for California so it will be all guy time for the rest of the week.  My plan for tomorrow is simple:  & ...

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 ...

Day +52

Still no yellow nose friend - yeah!  Jacob’s weight is holding and his blood counts showed he was well hydrated.  Today he drank 2 cartons of the carnation instant drink (up a half carton from yesterday) along with his regular intake of vitamin D milk ...

Day +51

It was a pretty good day here in Cincinnati.  & ...

Day + 50 – Wow, half way to the day our doctor will consider allowing Jacob and Justice to be together again.  We can’t wait!

Well, we made it home with NO yellow nose friend!!!!  Jacob’s weight did drop a bit from last Friday and the calories I reported he i ...

It was a good day here in Cincinnati.  The home health nurse showed up at 7:30am

When I arrived in Cincinnati on Sunday it was late and Jacob was already asleep.  As is the routine, around midnight it was time for a diaper change.  First Brian just went in and I stood at the door. 

I’m asking for renewed prayer for JT’s recent nausea and vomiting issues.  This morning he threw up a truckload right in the middle of his morning oral meds.  It got all over the IV line and his bedding and it shook him up.  But worst of all, he didn’t keep any of his important medicines down so he missed a whole 12-hour dose of them all.  I called one of the doctors to check in and she said that sometimes kids go through spurts when their stomach becomes upset.  However, I don’t think this is the issue at all.