Shortly after I posted last Daylon's blood pressure slowly began to drop and within a couple of hours was in a healthy range. He held great pressures over 15 hours and Daylon was released from the hospital Sunday night! We were able to make our flights for first thing Monday morning! Woo-hoo! As usual, the trip was stressful and frazzling. This time they even patted down Daylon. Having his tummy patted a few days after surgery resulted in many tears. Plus, to save money, Brian flew with a different airline and landed at a different airport (note to self: not worth it), leaving me to carry Daylon in a blanket with his long feeding tube, his little backpack with the machine, the diaper bag, camera bag and the car seat all the way back to the VERY. LAST. ROW. of the airplane. Did I mention that in the process I managed to get his feeding tube caught on arm rests three different times and only knew when I had walked far enough away from the armrest that it was caught on that Daylon yelled out. By the time I got to our seats I was ready to cry along with him. One word: Nightmare. Anyway, after a long day and a good night's rest, we're home! We go to clinic tomorrow (and every few days for a while) to make sure that his blood pressure is under control. Today we're just spending it trying to get back into the swing of things. We'll keep you all updated as we know more!
Thank you for your prayers! I know that Daylon has made over obstacle after obstacle because he has so many wonderful people praying for him. Thank you! Thank you! Thank you!
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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.
10 comments:
You need to set up a travel fund. I'd pay to know you and Daylon don't have to go through that again, but so so glad to know that his blood pressure has stabilized, at least for now. It must be great to be home. Have a great day, and a great week. Sending prayers!!!
Wow, that is just one more miracle for Daylon. And I agree, you should set up a travel fund so you guys can travel first class or something. Poor guy and poor mom!
WOW! So glad you guys are home! That is such great news. Remind me to send hate mail to TSA. Love you!
Jen you surely looked like a security threat to the TSA. :o)
Glad your home.
Cheryl
Why couldn't Brian have at least carried the camera bag on his flight to at least free you up with one less item to carry on?? Also most airlines will allow you to board first with small children.
I would get doctor note to show TSA so that Daylon doesnt need to get patted down again.
Lots of free flights for sick kids available via private corporations such as angel flights. Check out for future trips!
So glad to see that you got home safe and that Daylon's blood pressure went down. What a miracle. Our prayers have been answered once again. Praying things will continue to improve for Daylon and all of you. You are in our thoughtds and prayers and We Love You. Hang in there Baby Daylon, you little Superman! Take Care, God Bless! We are here for you if there is anything we can do for you. Give all the kiddos a big hug for us, they are so precious to us and we love them. What a wonderful family. Sending hugs and prayers.
All Our Love;
Myrna & Dwight CA
Hey Jess!
Just to answer your questions...
Brian was already maxed out with 3 bags (which were bigger than the camera bag)to take with him. We have a doctors note explaining his disease (we couldn't get past security w/o it b/c he looks contagious to most people) but the note doesn't justify alarms that go off when they scan his machine and or meds. Normally, I try to get to the airport 2 1/2 hrs early so we can board first and I can try to convince the flight attendants to move us next to a wall (so no one pushes their chair back on his toes). We were running late this flight because we needed to run to Target to buy more luggage (we had more medical supplies to come home with than we thought) and after spending forever in security, they were already starting to board when we got to the gate and got our stroller tag. The Angel Flight program is great, but it's pretty much for dying kids, they take weeks to get and an annual check up and basic surgeries don't qualify him. It's not that we didn't have the money to go together, it was the price difference between flights (several hundred dollars). I was just trying to save a buck, ya know? Needless to say, we won't do that again. :) Thanks for all your concern!
Love,
Jenn
Hi Jenn: So happy that you guys are home. There's no place like home.
Sorry that the flight home was so awful. Why would they pat down Daylon? There sure are a bunch of boobs out there!!!!!
Will continue the prayers for your precious son and the whole family. The EB prayer warriors are here for you guys all the time. Take care and Keep the Faith. Love and Peace Leah's Nana
Oh Jenn! You are amazing. So glad you are back home and Daylon is once again beating the odds. Our prayers continue for your entire family. We miss you guys. Love to you all.
The Paramoures
I could see that whole airport scenario in my head and can't believe that no one helped you. I wish we were there. We're glad you made it home. Daylon is looking so grown up in your other pictures. I love it.
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