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!