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!!
9 comments:
I'm pretty sure you haven't read Patrice's blog. She has fundraiser going for Anton. I think he's touched a lot of people. I've never commented on your blog before, but I've followed you from the beginning through Patrice's blog. I'm so glad Daylon is doing okay and hope the growth on his tongue doesn't cause too much trouble for him.
Janet
Good luck to you and Daylon while you are in Minnesota. You have a very loving heart to want to care for Anton, and I hope and pray he finds a family very soon.
Having your Daylon and knowing what EB care requires, I think your heart is great. I have read about Anton on the Williams family blog, and have prayed for him daily. I pray he does get that loving family he deserves just like your Daylon and Jonah have along with the other EB parents blogs I follow.Keeping you guys in my thoughts and prayers.
I am glad you got there safely. Flying with a small child is hard at best. I am so sorry that people are leary. I wish they could understand better.
I hope Anton's new family finds him soon and gets him out of the hospital.
Cheryl
I've been following Anton, but I didn't hear he was moving into an orphanage. That is so frustrating! I keep praying for God to raise up a Christian family to love him.
I'm praying that Daylon has a quick recovery and for strength for you :)
We are so thankful that you and Baby Daylon got back there safely. You are always in our thoughts and prayers. Sorry to hear he is not eating well, but glad the vomiting is doing better. I know you miss Brian and the other kids and I know they are missing you a whole bunch also, Your family is such a wonderful family, so loving and caring. Such an inspiration. We will be praying that Daylon's surgery on Mon. will be a real success and that he will get some relief on his tongue. He is such a little trooper and such a fighter. He has such wonderful parents and you are always there to give him the comfort, love and strength to go on. He is so adorable and we love him so much and all of you. I don't know how you do all the things you do, you are such a tower of strength and so amazing. Daylon is truly blessed to have you as his parents. Your other kids are adorable and so loving. Have a Good weekend and Take Care. Hope to see you and Daylon real soon back in CA, we miss you. If there is anything we can do for you or your family we are here for you. We will be praying, praying aand more praying for Baby Daylon that his surgery will go well and that he will have a speedy recovery. We love you. Baby Daylon, Fight, Fight, Fight. Heavenly Father loves you and is going to be by your side all the way and comfort you and give you strength. Take Care & God Bless.
All Our Love;
Myrna & Dwight CA
Can't seem to find words today. Hope all goes well for both these precious boys. Sending prayers!
I am so glad you guys had a good trip. My heart is just absolutely breaking for Anton. I can't believe his parents could do that. I will definitely keep him in my prayers. Hopefully he finds a family soon. No baby deserves to be forgotten.
Lots of Love,
Amber McLaughlin, CA
I cant believe the Anton story! WOW! How could anyone do that to any child EB or not? It is beyond me. He looks like such a sweetie and I pray he can find a family to LOVE him!! He has been on my mind a lot since I read his story. It just breaks my heart.
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