A couple things...
One is that I just wanted to let you all know that tomorrow Daylon and I are heading back to Minnesota. We'll be there roughly 2 weeks. He has an appointment scheduled for Tues and with some luck, surgery will be Wed. He will be intubated and hopefully only spend a few days in the PICU. After that, he'll spend the rest of his time over on 5D with all our BMT folk. I'm really excited to see everyone! They're like family to us! :) This is some risk with the surgery and I'm really nervous. Daylon's mouth is one of the most sensitive places on his body and his last oral surgery resulted in the latest oral events. They have said that trauma will more than likely occur with this surgery and the mass could grow back. Anyone who is inclined to pray for Daylon, please pray that the surgery goes well and that no damage is done to his mouth. Please pray that the intubation goes well also. His poor little airway, is an absolute disaster, which I know we need to fix in time, but I don't want that to be now.
|Tripp last year at his birthday|
I have a favor to ask of all of you. Will you please stop by Tripp's blog and post a note for Tripp and his mommy Courtney. If you don't know Tripp, he will steal your heart, like he's stolen mine. Tripp has the exact same form of EB that Daylon has and he holds a special place in my heart. I've been reading his blog for quite some time now and so much of what Tripp was going through, Daylon was going through. Their lives almost mirrored each other at times. I always really felt like Courtney just spelled out all of the fears and emotions I was having. It's not like I could just go to my local EB mommy support group at the local civic center. EB is such a lonely disease and when you find out that you have less than a year to help your kid (every parent wants to find a cure)...I'm not ashamed to admit I was panic stricken. You know the nightmare where you run and run, but you never get anywhere and no one can and or will help you? That's a lot what raising these babies is like. Anyway, ever since I came across their blog, life has been so much easier for me knowing that there's another family fighting the battle with us, even if the are across the country. Courtney is a wonderful friend and an amazing mommy to Tripp. Sweet little Tripp is such a strong fighter. He was truly blessed to have such a great mommy who has filled his life with love. Tripp is having a really rough time lately and he can use all of our support, love and prayers. Please visit them.
I'll try to write more tomorrow once we're settled. Sweet dreams.