Well, I have fallen behind in blogging again. Thanks for being so patient! :) I've not had as much time to write and at the end of the day I'm pooped! Daylon is making great head way towards getting off the ventilator. I love progress! He's had 4 breathing trials where the vent turns quits working for him and it's all up to him to stay in the game. If he were to slack off or start breathing too quickly or something, the vent would kick in and come to the rescue. The doctors are all amazed at how well he's doing. They told me they can't believe he's the same kid from last week. With any luck, we could be back on 5D this time next week. The only down side is that with less sedation, I'm literally holding him down to keep him from beating himself, several times a day.
Daylon is peeing once or twice a day now and last night they put him on a diuretic. His Creatinine level is just two smidgens away from "normal"! I wish you all could be here today when the doctors came in to the room to tell us they think we should remove the DNR from Daylon's chart! I could have literally kicked my heels up! I know the doctors think that all this progress is just unexplainable, but I know better. I know that there is the faith and prayers of more people than we'll ever know moving Daylon (and our family) along. Modern medicine is great, and works wonders, but in the end, it's all up to Him. Seriously, think of where we were just 7 days ago...amazing!
I need to go get Brian from the airport. Woo-Hoo! I miss him so much! This is the longest we've ever been apart since we've been together! More tomorrow! Oh, I got some fun pictures and a CRAZY story for ya all! Sweet dreams!
Help with the cure
I'm giving up my birthday for PUCK! To donate towards a cure, click here!
LAUGH
About Us
- Jennifer Edling
- Lake Elsinore, CA, United States
- We're Brian and Jennifer Edling and we have 5 beautiful kids: Keira,8; Caleb,6; Violet and Sadie, 5; and Daylon who turned 3 in July. Daylon was born with a rare disease called Epidermolysis Bullosa. His specific form of EB is Junctional Herlitz. When contact is made with his skin, it blisters and peels or sometimes rips right off. Unfortunately, his form of EB also affects his soft tissues (organs, throat, mouth, eyes etc.) giving most kids with his condition less than one year to live. Thanks to modern technology, there's a new clinical trial Bone Marrow Transplant at the University of Minnesota for severe forms of EB. On June 24, 2010 Daylon became their first JEB patient to undergo transplant. We're all so excited at the prospect of Daylon's improved life! This is the story of our sweet baby Daylon, and life with EB.
8 comments:
I am so happy for you! "Hard things take time to do. Impossible things take a little longer." My friend sent this to me. I thought of you.
I am so glad that your sweetie is coming home to good news.
I will be gone all week starting Monday to girls camp. I'll be anxious to get home and see how your week was. I'll pray for a good one!
I am so happy that things have turned around so miraculously. I know life is never perfect or easy. Smooth sailing is rare. But, we know that the Lord is there for us when the tempest blows.
Cheryl
Amen! This is only the beginning! My father has his whole church praying and we will continue to do so!
WOW More awesome NEWS!!! YAHOO! I am so excited he is doing so well! The doctors should be amazed Daylon is a fighter and a little miracle!! And even more pee!! YES! The power of prayer is wonderful and can move mountains. Dont worry about keeping up with your blog...we all know how BUSY you are!!! Go get your hubs :) Glad you will have him back by your side. I am sure he is THRILLED to come home to lots of good news!
YAHOO! Go Daylon. I knew he could do it. I will be fasting again tomorrow asking Heavenly Father to continue helping him to heal and make a FULL RECOVERY. Lots of prayers and love continue to go out to your family. Stay strong.
Take Care,
Amber McLaughlin,CA
Wow, what great news!! I am not surprised though, prayers and lots of love = miracles.
Glad that Brian is coming home to all this wonderful news. I'm sure he missed you guys terribly.
Hang in there and keep the faith. God Is Good. Love Leah's Nana
Hi Jennifer, My name is Cindy Ricke. My husband Don and I know Brian. We used to make parts for Interact Power. Anyway, I had heard about Daylon, but never knew how serious until I got the blog address from Joe. Wow, what a story. You and your family are in our prayers. You are such a dedicated mom and that little guy of yours is such a fighter. I can't imagine all that you and Brian have gone through. I admire you both so much. Tell Brian I said "Hi" and I love reading about how well Daylon is doing. Praying everyday just keeps getting better for the sweet baby. Praying.................
This post brought tears to my eyes. Such wonderful news. I am also glad to see Brian is back and you dont have to do it all alone.
Denise, WI
Don't worry about keeping up with the blog. I am super grateful you are sharing Daylon with us strangers. He has touched my life so very much.
I static about all the great news. I am continuing to pray for a full recovery. It will most likely be a bumpy road ahead but your Faith and the Faith of all those praying for Daylon and your family will make miracles happen.
Post a Comment