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

What's Next For You

Dear Dylan,

Last night and the night before you did really well. You really had no reaction to the re-infusion after you got past that first hour post infusion, and you being so out-of-sorts from the meds and the 7 people in your room all contributing to making it too warm in there (not to mention that you created your own heat trying to get up and away from all 7 of us).

Today & yesterday you were in an amazingly good mood. You are usually in happy spirits, but yesterday you seemed to be in a great mood and were very happy and playful. Today you were a bit more tired and finally took a good nap -- something you had not done since we have been here. You are also really cuddly and want to sit in my lap a lot of the time.

Yesterday we had a 3:00 appointment with the neurologist that Dr. Kurtzberg refers her patients to. Since it was at the end of the day, we didn't do any 'playing' other than going to the pool in the morning. It was nice outside all day.

We had today off -- no doctor appts and it rained most of the day (real rain -- with thunderstorms). We drove around through Duke University campus & also North Carolina University campus. I took lots of pictures of you in the car. We had bought a 'noodle' at the dollar store yesterday, so we could play in the pool with it. Since we couldn't play in the pool with it, we played in the car with it!! and then you finally dozed off and slept until we got back to the room. You still seemed tired after we got back here and that is when you took about a long nap here in the room. You needed that and are now awake and in another great mood.

_________________________

So, now the wait begins. Dr. Kurtzberg said that we really wouldn't see anything for about 6 months. They had done studies that tell them it takes about 6 months for these cells to be seen in the brain.

We had a great surprise on Tuesday, when June told us that they had held back about 20% of your stem cells. That means they are holding over 100 million that you could have at a later date, if needed. We also learned that you were given over 600 Million cells. Wow -- that was a lot more than we expected. We left Duke Children's Hospital feeling very positive and excited for you.

So, we begin our waiting and our continued prayers for a miracle in your little body. Your father and I are very thankful to Dr. Kurtzberg for providing this opportunity for you. She is doing an amazing thing for little ones like you and we are blessed we found out about this through ViaCord (the place where we banked your cord blood).

As I mentioned in my previous letter to you, the clinic where we saw Dr. Kurtzberg, seems to also take care of many children that seem to be fighting for their lives. It is pretty sobering to see all these children fighting for their lives and then there are a few of us, re-infusion patients, hoping to give you, our child, a much better life. I guess, Dylan, in the end we are all striving for the same thing -- a better life for our children, but the reality of just how fortunate we are that you made it through your difficult birth, and are still working hard to recover from a tough start, seems to really hit home in this environment.

We feel very blessed and are proud to be your parents.

Love,

Mom & Dad

Your Big Day

Dear Dylan,

Today is the day!! We have waited what seems like a year for this day to arrive, and we can't believe it is here.

You definitely know there is something big happening today, as you had a very tough night of sleep last night and didn't seem to settle down until I told you, "we will be there with you all the way -- mom & dad won't leave your side". It was after you heard those words that you tucked your head in next to mine and fell soundly asleep. A few hours later you woke up again, screaming and crying. You were just a bit unsettled throughout the night.

Your appointment is at 10:30 this morning and you will have your re-infusion sometime after that. I think it will be sometime this afternoon.

Little 'D', we are with you today, and won't leave your side.

You are a tough little guy. I know you will do great!

Love,
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.