Sunday, May 31, 2009

You are Home!

Dylan,


Whew... what a trip we had home. The plane was delayed in Raleigh, NC because of thunderstorms there and also because there were thunderstorms in Pennsylvania, where we were to change planes. We stayed on the tarmac for almost an hour and before we even flew out, and knew we were probably already on track to miss our next connection in Philadelphia, even before we left the ground in Raleigh/Durham.


We landed in Philadelphia and then had to run to another terminal to catch our next flight home. We arrived just as they were closing the doors. The nice flight attendant actually moved us up to an empty row towards the front of the plane and that made it easier to get all our stuff on with us and not hit all the already boarded passengers with our bags as we were going by. This flight was also on a gate hold and delayed. Once we were on board we didn't really care -- we were just glad we were going home. You managed to eat some food that we brought with us and then fell asleep even before we took off. You slept pretty soundly through take off and for about 3 hours. That was a great nap for you considering that we would be getting home very late now.


Dylan, we hope we are nearing the end of having to gate check a stroller for you. Your first stroller, which was awesome for traveling with, was badly damaged on one of our early flights to the Institutes in Philadelphia, so we used a jogging stroller that your dad bought for me (it was a birthday present for me so I could take you on walks -- pretty nice gift for the both of us), and then at the gate, we broke it down and put it into a massage table bag to protect it. One of the wheels still managed to get bent a little, but none of the fabric got tore and we knew it would be nice and clean to put you back into when we landed. We decided since there was a high probability your stroller could get damaged on this trip, that we should NOT take your very nice, Special Tomato Jogger (a stroller for little guys like you that can't walk yet) that we got from Developmental Disabilities last year. It is very nice and you love it. But, you adapted very well to the stroller we took and were very happy every time we took you out in it. We always appreciate your happy spirit and great attitude. You adjust so well to everything that goes on in your life.


Since our connection in Philadelphia was so tight, it didn't surprise your dad that our bags didn't make the flight with us. We got to Portland and then had to go to the US Airways counter and make a claim for our bags. We also checked your car seat and so we had to get a loaner car seat from US Airways. (Just a note to you when you read these 20 years from now -- the airlines have just started charging for bags -- $15.00 for each checked bag, but car seats are allowed on flights free). Your father and I are pretty picky about how clean things are for you and keeping you healthy, so we always bring our own car seat for you, but made the loaner seat work by covering it with blankets before we would put you in it.


We got home at around 1:00am (Portland time), but 4:00am North Carolina time (the actual time zone we were on). Yesterday seemed to be a big blur and we are just trying to get settled back in. US Airways did get our bags delivered on Saturday and everything looked fine with them. Your father and I thought it was interesting that the two times our bags have got lost by an airlines, that both flights were US Airways.


Your dad went to a softball tournament today in Portland (it was a one day tourney) and had to leave the house this morning at around 6:30am -- that is dedication. (way to early for me to even think about playing ball). A few of the guys on the team asked him to bring your silicone bracelets with him (we got them right before we left for NC). The bracelet color matches the color on their jerseys, and several of the guys bought them.


Your progress: We are still noticing the bursts of energy, but really haven't seen anything else. We are told it will take 6 months, and will now wait...


Dylan, you are VERY glad to be home with all your toys. I don't blame you, you have had a long trip.


I love you,

Mom

Friday, May 29, 2009

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

Thursday, May 28, 2009

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


Tuesday, May 26, 2009

Your Big Day - Post Re-infusion

Dear Dylan,


We made it! It was a long day, but we are home and settling back in for the night. You are one tough little kid.


Here you are in this picture waiting for your turn!



This is where your day started - a stay in the waiting room with a bunch of other parents and little ones, all waiting to be seen, and the sobering realization that we are in what seems to be the cancer/chemo clinic for toddlers, little children and teenagers. Wow -- what a tough & amazing job the people in this clinic have.


You were taken back to be weighed and measured about 11:00am and we were taken to a room where we would spend the day.

We made a little play area on the floor as it became obvious to us that you were going to go head first off the bed if we didn't actually help you get to the floor. A little while later a very nice woman named Colleen came into the room and we talked about your medical history and she examined you. We talked about current therapies and 'the program' that we have done with you (http://www.iahp.org/) for 3 years. (http://www.help4dylan.org/)

We were told there were 3 children like you getting a re-infusion of their own cord blood stem cells in the clinic today. They were both younger than you (2 years old or so). The younger children would be done first, and then it would be your turn. Kristin, the head nurse for the day, came in and gave you some Tylenol and told you that your turn would be coming.

About 2:50 the 'crew' showed up. That consisted of Dr. Kurtzberg, June, Colleen, Kristin (the head day nurse) and Teresa (another nurse). We all had to hold you tight as Dr. K tried to get the IV placed into a vein in your foot. I understand that she personally places all the IV'S for the re-infusions. It looked like that might work, but it wouldn't draw back blood, so we decided on a vein in your right arm. That was quickly successful, but, you were pretty upset by this time and couldn't stop crying (and screaming). Through the IV, they drew some blood and then gave you Benadryl & some kind of steroid(?). Then they started the IV drip with your stem cells in it. You wanted nothing more than to sit up, but the important job of actually re-infusing your cells had been started, and it was imperative that you remain lying down and still. I am sure you may have also been bent on tearing out the IV, since you weren't too happy it was there.



The actually re-infusion was only about 15 minutes, and then the IV was checked again and an IV drip solution was started. The IV drip was to run for 2 hours, but about an hour into the process, you managed to dislodge your IV line and it was disconnected. You were finally successful getting rid of that thing!


You seemed to have a pretty strong reaction to the Benadryl and were wired and very upset. You were really out-of-sorts and screamed for much of the next hour. We finally got you some snacks and one of your favorite toys (a belt you like to chew on & you give it to me to run my fingernails on and make you laugh) and that seemed to help you to settle down and bring a that cute & long overdue smile back to your face.



After the IV was removed, we changed your clothes (you were pretty sweaty with all that crying, squirming, wiggling & screaming), and I know that also helped you to feel better..

We hung out for the next couple of hours until Dr. Kurtzberg came back in and checked everything out. We had a few minutes to talk with her and Colleen and were released to go home (about 6:30pm).


Here is a movie of your day. Your actual re-infusion started at about 3:06pm. I noticed that the camera date/time stamp is early by an hour....

video

Dylan, we love you, and our prayer is that this day will prove to be a huge stepping stone in your life's journey. We will ALWAYS be by your side and WE CAN do this together.

All our 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

Monday, May 25, 2009

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.