Monday, February 7, 2011

Day +226 heading out

Hey Everyone!

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.



I pray for Daylon every night and I will GLADLY add TRIP!!! Sending blessings your way!!!

Have a safe trip back and I pray everything will go smoothly with the surgery on Wed! I am cheering Daylon on.... GO DAYLON>>>GO DAYLON!!I love all you guys and am always thinking of you!

Ps. uuuummmm YA! I would LOVE to come to his Bday party....and am thankful I was even thought of :)

Gilda said...

Sending Daylon prayers, for a safe trip and smooth surgery:) I follow Tripp's blog and just love him too. Your Daylon and Tripp are always in my prayers.

Lisa said...

Hope you packed ski's been SO cold here! Welcome back to MN, I'll be thinking of you. Daylon's a fighter, I'm sure he'll do well with this surgery.

Aviles Family said...

I have been following Tripp too. Courtney is amazing, as are you! Good luck on your trip tomorrow, we will continue praying for you guys!

Anonymous said...

Daylon is in every family prayer that we have! Good luck next week and stay positive :) You're an inspiration! We look forward to seeing you when you get back to CA.

sharon kaye said...

Thank you for the update and letting us know what we can pray for. We love all of you.

Mom to Many said...

We will be praying.
I hope that everything goes smoothly.


Anonymous said...

We are hoping everything goes well and that you and Daylon have a safe trip. Bundle up real good, it is cold out there. Our thoughts and prayers are with you & Baby Daylon. We will be praying for Baby Daylon and the rest of your family. Your children are so precious and we love them dearly. Go Daylon Go, Fight, Fight, Fight you little Superman, you are so adorable. Take Care & God Bless. We are also praying for Baby Tripp and his Mommy. We Love You and are hoping for great updates on the surgery with Baby Daylon. Hope to see you real soon back in CA.

All Our Love;

Myrna & Dwight CA

Annalien said...

Praying that Daylon's surgery goes smoothly and that it is fully successful. God bless!

Jan's Blog said...

Thanks for the update and know that lots of prayers are being sent for Daylon. We pray all good things for Daylon! Thanks for introducing Baby Tripp and his darling mother. They will be added to our prayers.

Anonymous said...

Gosh, Jennifer, I don't know how you all handle this, but I know that God has a lot to do with it! You are the toughest family that I know! Praying for you all and love you all!
Aimee and Carlos
Kerrick and Killian