Monday, January 10, 2011

One tough cookie.

We slept well last night. Lew woke only once. Henry woke at 4:20am. I rocked him back to sleep by 5:30 but then it was morning.
Our day got off to a slow start because the doors to the van were frozen shut. Anastasia and Zane missed their orchestra class and were late for school.

Henry made it to his follow up appointment with Dr. Wadie seven minutes late. It was a quick check up. His site is healing nicely, and we trouble shot some of the retching issues. We need to slow the feeds, and keep at it.
He'll adjust. His stomach will stretch. He's lost 1/3 of the capacity that he had before, so tolerating even half the amount of before causes his stomach to distend, creating gas and the need to vomit. Retching threatens to pull the stitches and undo the nissen fundaplication that is responsible for keep his food in him. The Gtube cause reflux, which causes retching and the cycle begins... We also need to start putting gauze between the gtube and his skin because it's causing granulation tissue, which just means bumpy scar tissue and little bitty sores.

So, we're off on another adventure to discover how much we can handle. I'd rather face the long lines of a ridiculously short roller coaster, but the universe had other plans...


  1. I hope you get many more good sleep nights. Glad Henry is doing better. <3

  2. As always- just sending support and good thoughts your way, Mama!

  3. just became aware of this great site, you guys. i saw the beautiful album on facebook of henry playing with the lightbox. what a knockout he is! :>>)) glad to hear he is sleeping again. hope it all keeps up. love and support to all of you ~lt xoxoxoxoxoxo

    ps. word verification: resmsoup. is that what henry is eating now? :>>)) curiouser and curiouser. life's one helluva ride... xoxoxoxo

  4. I'm back again and no new posts make me nervous! Sending you the good stuff, lady! Just the good stuff. :)