The Energizer Bunny

Dylan,

It is Friday, and 3 days post stem cells and your father and I think you got some new batteries put in. We have both thought you seemed to be a bit wound up at times... not all the time, but when you get going, you seem to have an extra burst of energy.

We fly home from Durham/Raleigh, NC today and won't get in until late. Our plane is scheduled to leave around 3:45 pm, so we are just taking it easy and hoping to visit the pool before we leave today. But, as luck would have it, it is a bit overcast and there are thunderstorms forecasted. Hopefully those will subside before we fly out.

You are ready to go home and be in your own home. You need your own bed, music, toys... Your dad and I are looking forward to being home and starting in on your daily therapy. We are outlining a program that we will stick with daily which will include vision, vestibular, leg & back strengthing exercises, patterning, physical therapy, and an excellent nutrition program (you are already doing much of this work daily, and have been on a 'whole foods' nutrition program for about 3 years)... We know is helps you, as when we allow you to have non-whole foods, or something prepared in a restaurant, you do seem to be more agitated and have issues with your diabetes insipidus (your sodium level) and your need for water increases... and then you need to pee more. It seems to be a vicious cycle when you don't your whole foods.

We are off to the airport to go home today and hope you will sleep some on the flights.

We love you,
Mom

The Next Chapter in Your Life...

Dear Dylan,

I have been writing letters to you since you were born. Today I created a blog for you and will post my letters to you here, so other moms & dads might be able to learn something from our journey. I have lots of back letters that I have written to you and they will be placed on this blog over time.

But today, I got your blog up because tomorrow you are having an amazing procedure at Duke University where you will get a re-infusion of your own cord blood stem cells (which your father and I banked at your birth). We don't know what this procedure could do for you, but when someone asked me the other day, this is what I told them -- "It's like Christmas when your a little kid -- you know your going to get something good, you just don't know what it is."

Your father and I hope this will help your vision, your ability to talk and your mobility. You want to walk so badly and when we help you walk, you feel like such a big boy and never stop smiling.

You know, a lot of amazing people have worked pretty hard to help you get to Duke University Medical Center for this re-infusion. We have done several fundraisers and on Friday before we left to come here to North Carolina, we got new silicone bracelets that the "Charis House" (on OSU Campus) is going to help us sell to raise money for you. We brought them with us and are proudly wearing our bracelets that say: www.ALittleBoysJourney.com - a story of hope... (on the outside) and 1 Cor 13:13 Faith Hope Love, the greatest is LOVE (on the inside). Everyone that has bought them so far loves them.

It is an honor to be your mom and to join you on this amazing journey. Today we visited the hospital where we will go in the morning. We took pictures of you in front of the office where we will go at 10:30 tomorrow. It was an incredibly peaceful feeling being there.

Tonight you fell asleep in my arms after a long day (on a different time zone). I couldn't help but wonder as you lay there sleeping so peacefully, what tomorrow might being for you, and if you understand what we are doing here in North Carolina. You are very smart, and we have told you why we are here, but since you can't talk to us and ask us questions, we aren't sure just how much you understand.

We are all on this journey together and your faither and I are blessed to have you in our lives. Your smiles, laughter and spunky personality bring smiles to us everyday. Dylan, you are ready for the next chapter of your life.

Our prayers and love are with you...

Love,

Mom

p.s. this picture is of you and Dad at Duke University -- right in front of where we will be taking you on Tuesday.