Friday, June 24, 2011

Day + 365 One year ago today!

Daylon receiving the last of the bone marrow last year
The title pretty much explains it. One year ago today our sweet Caleb had a pop can worth of his bone marrow pulled out from him and place into Daylon. I can't believe it's been a year. In some ways, it seems like just yesterday but in other ways it seems like a life time ago. This has been the toughest year of our lives (especially for poor Daylon). I can't believe everything that's happened. I'm recapping this for you all: In this last year Daylon has not only undergone an intense regimen of chemo and a bone marrow transplant, but has had such severe mucositis that his airway swelled shut and coded, VOD a form of liver failure that causes kidney failure, then kidney failure, a brain bleed which caused a series of seizures one of which was so long, it more than likely caused a second brain bleed which shows as a stroke and caused severe brain damage to about 70% of his brain. His brain stem malfunctioned for a couple weeks and told his heart to shut down. Signed a "Do Not Resuscitate" order. He's had a couple dozen blood infections, a couple dozen skin infections, mucusitis of the gut that lasted for apprx. 8 months and caused severe vomiting . The vomiting and an unknowing respiratory therapist ripped apart his mouth resulting in 2 surgeries to repair the damages. A third head bleed, followed by 3 burr holes drilled into his skull. Then malnutrition to the point of electrolyte deficiency and possible death. I have been told by countless, countless doctors that a healthy adult could not have survived his medical history, more or less an infant with a deadly disease. He did though. There is no scientific reason to support why he has. No scientific reason to explain why he can breathe on his own, not to mention play or problem solve. Since his birth, we have been told over and over the same line, "I'm sorry, but your son will not survive." Do you have any idea how much I hate being called into a conference with a doctor now? The thing is, they've been wrong. He's survived. He's a fighter and one of my heroes. No matter what's thrown at him, it may knock him down, but it doesn't knock him out. I feel so blessed to live my life and get to watch miracles unfold daily. I know that the reason my son is alive is because of the hundreds of thousands of prayers on his behalf from those who love and care about him. Thank you for your prayers. Thank you for raising awareness of EB. I hear all the time about Bible groups that are praying for him, people who've put his name on Temple Prayer Rolls, fasts that have occurred on his behalf by entire congregations or individual people, people who put him on their list for Mass, book clubs that pray, co-workers that pray, children that mention his name in their precious prayers, the list goes on and on. We are so thankful and so touched that all of your are standing beside us in this journey.
  As you all know, the transplant has worked and it's been absolutely amazing how quickly it's worked. We're hopeful that several years down the road Daylon's life with EB will be a memory. Daylon's personalty shines through each day now and we see more and more of a happy, healthy little boy. He's also up to 23 lbs, which is heaven! Just 7 1/2 lbs more to go! Thank you all again!

16 comments:

Anonymous said...

Yes, Daylon is a miracle, but he managed to survive because you and your husband were always at his side and you never gave up. So, congrats to the great family! I hope that one year from now you will be counting the happy "first times" and will have less and less contacts with medical community!

Go, Daylon!

Elena

Anonymous said...

So happy to be reading this post. God has blessed not only the Edling family, but those of us who read here, and pray for Daylon.
God continue the work You have started.
sg-KS

Mom to Many said...

((tears)) It is simply amazing!
I believe it is all about us learning to turn to God the Father of our Souls. We turn to him and we ask for help. Help putting one foot in front of the other each day. For some, the endurance asked for was to keep going as their little ones lost their battle with this terrible disease. For others, the prayer for endurance is to keep going when a solution seems so far away as the battle rages on.
For your family the prayer for endurance has been, help us to survive one more complication, one more emergency, one more untold financial set back, one or two more siblings needing extra love and support today when it seems there is nothing left, enduring days of uncertainty, days when you are just so tired, another day in the car, another attempt at power packing Daylon only to have it come back up, and enduring the good days too. I have learned that we need our Father above even on the good days...
I know he is there. I know he has not forgotten us.
I am so happy that Daylon's sweet little personality is coming back.
We have all felt desperate days and nights as we live our lives.
The thing that we can learn from watching your family is to keep going and never quit, to never stop praying for help and never stop believing in Him.
These little E.B. kids have made their mark on MANY hearts, mine included. Many knees have bent in prayer for them, many hearts have been humbled. And many have benefited.

Thank you for sharing Daylon's journey with us Edling family.

Cheryl

Jan's Blog said...

Reading the list like that brings into focus Daylon's struggle and the miracles that have saved his life. He is a miracle and an angel. We'll keep praying until EB is a distant memory!

Jess Edling said...

Must. Not. Cry. Must. Not. Cry. ... Drat.

Daylon is such a rock star! He isn't the only miracle - you and Brian are too. You have never given up, never gotten angry at Heavenly Father, and this has only served to strengthen your family, not break it apart. All of you are my inspiration. Love you all.

Jamie said...

God is bigger than Daylon's medical history :)

It's been an honor to read your blog, you are a light for Jesus shining in the darkest of times.

You have blessed me with your optimism and love in every post, no matter what was happening.

You have really shown me a way to be more like Jesus in everyday life, thank you so much.

Blessings and weight gain to Daylon (just blessings for the rest of you;)

Lisa said...

Daylon looks so great. I know your family has had a very, very difficult year. I'm overwhelmed with joy that he is continuing to improve!

Amy F. P. said...

Yeah! What a happy day. Thank you for sharing the many miracles of Daylon with us. You have an amazing family.

Hedi said...

Thank you for such beautiful and loving overview of his year!

Many, many God´s blessings to Daylon and your family!

Anonymous said...

Thank you so much for the update and overview of this past year and what a year it has been. You are an amazing family and that little boy is my hero....thinking of him and praying for him every day has made my life a lot different. Every time I think things are bad etc Daylon comes to my mind and puts everything in perspective. God bless you all and here's to an awesome year 2 of this amazing journey. I love to prove these professionals wrong......nothing can beat the power of prayer.
Daylon ROCKS!!!!!!
Bernie Gallagher, Fontana, Ca.

Anonymous said...

Yeah what a glorious day. So great to see your update of the entire year. What a blessing and true miracle of the way Daylon has come along during this year with so many struggles and tribulations, not only him but your entire wonderful, caring, loving family. You guys are awesome and We Love All of You. The pictures are great and he is such an inspiration of miracles and truly a Child of God. Give the kiddos a big hug for us, we really miss them and Love Them. Hope to see all of you real soon. Hang in there Daylon, you Little Superman. Take Care, you are loved.

All Our Love;
Myrna & Dwight CA

Anonymous said...

I am so very glad that Daylon is feeling so much better and gaining weight (yay!). I pray that form now on he just never looks back. Thanking for continuing to share your journey.

Much love to you all.
Annalien (from South Africa)

Anonymous said...

My 20 year old son, Kyle, has RDEB. We are currently in Minnesota while Kyle receives a live saving bone marrow with Dr. Wagner. When I first found Daylon's blog we were both here at the hospital. I didn't know if I should go knock and bother you. We couldn't believe all Daylon and your family have been through in such a short time. You have been in our thoughts and prayers since. You can facebook myself and/or Kyle or www.cotaforkyleh.com. Happy First New Birthday to Daylon!
Jerree Hicks

Bella's Blessings said...

Dyno Daylon, you are a CHAMPION! Mommy and daddy, you are the heroes! You have been steadfast in your love, dedication, advocacy, and care since day one and that shouldn't go unnoticed! God IS good; there is no way to explain Daylon's continued defiance of the odds. He is teaching so many lessons to so many around the world... through your blog. Cheers, and we can't wait to celebrate another MONUMENTAL MILESTONE tomorrow with you! Much love, the Ringgolds

Susan said...

Happy Birthday Party day, Daylon!!! I'm sorry that I don't know your exact birthday, but I hope you have a wonderful day. You're a miracle for sure and there are SO MANY people who love you and are rooting for you all around the world!

Best Wishes from Pittsburgh!

Susan, Roger, Ian, Aaron, & Lauren

Mom to Many said...

Happy Independence Day!