We are so thankful that Coltrane is doing so much better. Everyday he gets better and better. We have had a setback today that downed our spirits quite a bit. We saw evidence that he has a "chylothorax" and some of the proteins from the formula we've been giving him has been leaking into his drains instead of being absorbed into his body. If it was worse or get worse we could spend up to weeks or even months in the hospital clearing it up. So far, his drains have been improving greatly. Please pray for Coltrane to heal up quickly and that we can go home soon. And also be able to have our regular schedule for the stem cell transplant and such. Thanks so much!
Today was a difficult day for us. We were both pretty down from having yet more turbulence in the course of our path. We spent time outside, got to see our son Jack, and we exercised to release tension. What kept coming to my mind was "Trust me." So I will. It's hard to just do that and make it a verb your life. But it is an action. It must be done. Sometimes I wonder if all this didn't happen with Coltrane, would I be so willing to trust as he expects us to? In the end, it was a good day. Bad start, good ending. And tomorrow is a new day! (very dramatic interpretation of Gone with the Wind. P.S. I really despise overacting, but I make fun of it because I like hating it so much.) Hee hee. :)
Good news: Coltrane has been weaned off the high flow cannula and is on a regular oxygen cannula. His next step is to breathe normal air. Yay! And we've caught some great smiles from him. He's enjoying grape popsicles and ice chips....immensely so.
Please keep praying for our son and our family. Thanks with all our hearts!
Love,
Justin,
Sonja,
Jack,
and Coltrane the Xboba (he is known to be an "old soul" seems to understand things beyond his years.
No comments:
Post a Comment