MARK YOUR CALENDARS AND SET YOUR DVR'S.....

Submitted by Colleen and Derrick on Wed, 04/08/2009 - 9:04am.

Devin just finished his final interview with Nightline... The tentative date for it to air is next Thursday night... 4/16... This can change if something else should occur in the world that needs coverage... I will keep you posted...

WE ARE HEADED HOME TOMORROW!!! HIP HIP HOORAY!!!!

**** What an appropriate time for this to air... April is National Donor Awareness Month.... Although I know this is not a nice thing to think about it is part of life... Everyday in the United States thousands of people die... of those thousands, 1 in 99 meet the criteria for organ donation... 99 meet the criteria for tissue donation.... 1 person donating can save up to 7 lives... each day approximately 19 people are added to the list, while at least 19 die waiting... As of today approximately 101,552 people are waiting for organs in the United States... 1,990 of them are kids.... NO ONE!, let me assure you knows when they will be on either side... needing an organ or donating one.... NO ONE IS PRAYING for anyone to suffer the loss of a loved one, that I CAN GUARANTEE YOU!!! Accidents and untimely deaths happen everyday regardless of organ donation... I know people fear if they become an organ donor they will not get appropriate medical care... We live in the United States in 2009... Their are strict!! guidelines and protocols that are followed before organ donation can even be considered...
**** All I ask is that you ask yourself this one simple question...
IN YOUR LIFE, IF YOU ARE GIVEN AN OPPORTUNITY TO SAVE SOMEONE, WOULD YOU???? If your answer was yes, please sign up to become an organ donor today... www.organdonor.gov and please let your loved ones know how you feel!!

Their is not a day that goes by that I don't think about our precious little donor angel.... May this precious little soul rest in peace.... I think about the family.... and how through this tragedy they suffered... gave the ultimate gift of LIFE.... and for that I will be eternally grateful!!

We Are Hoping...

Submitted by Colleen and Derrick on Tue, 04/07/2009 - 10:51am.

As long as Devin's biopsy looks good on Thursday.... WE ARE COMING HOME FOR GOOD :)!!! I think this will be a blessing for everyone.... Especially my mom who has been a saint.. putting up with two kids and a puppy!! OH Boy!!! I owe her BIG!! Devin does MUCH better at home... he drinks more, eats more, sleeps better, and is more active.. Here we are very limited in what we can do, so he spends much of his day playing PSP and watching TV... not very healthy!!

How the journey will continue... We will come back to DC for the next two to three weeks weekly. This will allow us to get our Biopsy, Dr's visit, and our Cytogam and Pentamidine infusion when needed. From their I believe the visits will go to bi-weekly for about a month... And then the the moment we are waiting for...... the reversal of the ostomy!!!! This is the plan as long as we have NO set backs!! So, please keep the prayers coming... This journey is far from over!!

Thanks again to everyone!!!!!!!! for all your love, support, and prayers!!

The Verdict Is...

Submitted by Colleen and Derrick on Mon, 04/06/2009 - 1:36pm.

He can maintain his weight.... oh boy!!! He now weighs 51 lbs..... He put on over 2 pounds this weekend!! GO DEV GO!!!! He is loving his food... As I told Derrick (who worked all weekend) all I did was give meds and make food.. Now between him and Raymond I need a short order cook... LOL!!

Back In DC, Again.....

Submitted by Colleen and Derrick on Sun, 04/05/2009 - 8:39pm.

Devin and I are back in DC... We had a great weekend home.. We got to resume some measure of normal living... Ma... I need a ride, can you pick me up, can we go to, can I have my friends over, can you make me, and so on..... Devin loved being home with Raymond, Caitlin, and Buster ( the puppy)
Devin did amazing!!! he ate like a champ!!! He seemed to tolerate being off his feeds for 6 hours. Tomorrow, we'll see how his body tolerated it. Was he able to maintain his weight and hydration???? Time will tell...

Next Step...

Submitted by Colleen and Derrick on Fri, 04/03/2009 - 7:54am.

Biopsy #8 went well. The Dr says it looks great, just waiting on the final word. On Monday they may start a second anti-rejection med and start weaning the steroids... Thank God!! because he is very!!!!! grouchy and emotional... I am hoping it is just a side effect of the steroids. Yesterday they took his staples out, which he was quite excited about... and repositioned the drain, which he was not excited about.
Today is a big day... We are moving on to the NEXT STEP....Devin will only have his tube feeds for 18 hrs instead of 22. He is very excited about this because it means 6 hrs totally free. Their is a catch.... he must drink 6 hrs worth of fluid by mouth. He can drink G2 or Propel. Lets see how that goes..... He must take in about 550 cc (18oz) by mouth... Time will tell.. We are hoping this will make him eat more and want to drink more... Don't forget the ultimate goal is for him to take in enough calories by mouth and possibly only use the feeding tube at night for supplemental hydration.