Thursday, February 10, 2011
Anyway, he had dialysis on Tues. and they decided not to give or remove fluid. At the end of dialysis he was 11.6kg. Yikes. That was his dry weight at 10 months old. His vomiting has gotten better, but he has very little desire to eat and literally clamps his mouth closed if he sees a spoon come at him. All he'll open for is his squeeze bottle. Not even a syringe of smoothie is tempting anymore. Dr. Tolar and I have been emailing back and forth and I think we're going to plan on added a PICC line when he heads to the OR.
ENT needed a few days to get everything in order for the surgery. It looks like Monday at 1:30pm is the big day. Looks like we're looking at a looooooong weekend ahead of us. It's really okay though, because I'm enjoying the bonding time with Daylon....although I do have to say I miss Brian and the kids like mad! Thank goodness for technology! :)
I want to throw a question out there to all of you:
Are you thinking about having a baby?
You don't have to actually answer that, I just wanted to get your attention! :) A few months back I started emailing a woman named Natasha who has come across a little Russian baby named Anton. Anton's parents hired a surrogate to birth a child for them. She ended up having twins: one healthy baby and one baby with EB, Anton. The parents decided to only take home the healthy baby and left Anton behind at the hospital forever. He's been living in the hospital his whole life. This story broke my heart. I instantly wanted to adopt him, but Brian was level headed and reminded me how much we have on our plate right now. I started telling all of the BMT nurses and doctors about him because I figured they'd be perfect having EB experience and all. We moved back home and I kind of dropped the ball. Anyway, I got an email from Natasha last week that the hospital is moving Anton into an orphanage where there's one adult to every twenty kids. I hate to say it, but it would be really hard for an EB child to survive under those circumstances. They require hours of care and a 1:20 ratio won't allow for the time he needs.
Anton just had his first birthday in January. Psychologists say that he is calm and loving little boy with a surprisingly sweet disposition. Financial help is available.
Let's find a home for Anton!!
Posted by Jennifer Edling at 2:43 PM