ONE YEAR AGO......

Submitted by Colleen and Derrick on Tue, 02/23/2010 - 9:27pm.

One year ago today Devin was given the most precious gift one could ever receive... "LIFE" It was given by a complete stranger at one of the most difficult times in their life... Tonight, as this family deals with the one year anniversary of their childs death. I ask you all to pray for them... Pray for our little donor angel... this little angel will forever hold a special place in our hearts!!

Although Devin has had his share of ups and downs this year... on the ups we try and make the most of every day and on the downs we weather the storm......

Today their are so many people to Thank!!! so many people that have touched Devin's life and have helped him get to 6 years of age.... 1st the NBI crew... Nurses, Doctors, Surgeons, Sedation Unit, Child Life, Message Therapist, Respiratory Therapists, Secretaries, NA's... you all started the spoiling and it just continued... RWJ... a great team of Nurses, Doctors, Secretaries, Child Life Therapist, & Lab Techs. Last but by far NOT least Georgetown... the devotion of a team that loves their transplant patients!! Without each and every one of you I don't think I would have made it through this year!! PICU, Transplant, Sedation Team, Child Life, Respiratory... you are an amazing group!! My wonderful feeding/speech therapist... who NEVER gave up on him... (take a look at the last picture)

Special Thanks to RWJ's... Dr. K & D (nutritionist)... and in DC Dr. K... you are they most dedicated group one could ever ask for and I am blessed to have you taking care of Devin... your attention to detail and unending support has made this year possible...

To ALL!!! who have prayed... lent a shoulder to cry on... an ear to listen... words of encouragement... or a simple message in the guestbook... Thank You....

My family... who have been their through thick and thin... We couldn't have survived this year without you!!! Mom I owe you BIG!!!

Raymond & Caitlin who have been so understanding... kind... and compassionate!!! HE LOVES YOU GUYS!!!!!!!!!!!

This slide show is pictures from transplant until today....

God Bless My Little Trooper!!!!

Back From DC....

Submitted by Colleen and Derrick on Mon, 02/22/2010 - 10:20pm.

Everything looked beautiful... but as we've learned in the past the biopsy results are the final word... We should have them tomorrow night..

I O... I O... Off To DC We Go...

Submitted by Colleen and Derrick on Sun, 02/21/2010 - 10:29am.

Devin's bowel pattern changed about two weeks ago. He started going to the bathroom once a day every day... usualy is once every other day... Last Saturday he went 5 to 6 times... I cut his formula to half strength and things resolved... Sunday I called the transplant center to let them know something wasn't right... but!! I was not overly concerned because he had no belly pain, no vomiting, no fever, and he was as active as ever. Tuesdays labs showed a decrease in his anti-rejection drug levels, even though we increased the dose on Friday... HMMM! something is not right... Spoke with Dr. K Wednesday morning and he made some changes in med doses... and formula... we would re-evaluate the situation on Friday.. Well things didn't go as well as planned.. the diarrhea was back with full strength formula and now we have belly pain.. ggrrr!! So we are off to DC.. Unfortunately nothing is really screaming an answer at us... is it a virus or is it rejection (PLEASE pray not)... The one thing we do know is the bowel is not absorbing the way it was... Dr. K says something is not sitting right with him, so he'd like to scope first thing on Monday... If thats not enough to keep you awake all weekend!!

We will have biopsy results Tuesday night... Unless their is something very wrong and is visable to the eye...

Prayers Please...

Good Week...

Submitted by Colleen and Derrick on Fri, 02/12/2010 - 7:43pm.

Devin made the transition to his new school very nicely... he was very excited and was eager to return... two snow days was the icing on the cake!!! He had a blast! I bundled him up and sent him out to play... As he stepped out he said.. "Ma, the last time I played in the snow was with my old belly, right?? I said... you are absolutely right!! Many of you know I am not the snow... cold.. windy type... I fair much better in the heat... lounge chair... pool type... LOL!!! I asked Devin what was the best part about going out to play in the snow?? He said.... "you coming out to play with me!!!" AHHH!!

I was very happy to finally see the street again.. Mothers worst nightmare... "Tale of Two Cities.... DC and NY get slammed by blizzard" That make you feel real good! When you live in NY and the majority of your child's medical care takes place in DC!!! What's a few more gray hairs!!!

Thank You to EVERYBODY at ELS... you were very warm and welcoming to Devin!!!

A Day Of Mixed Emotion....

Submitted by Colleen and Derrick on Fri, 02/05/2010 - 10:02pm.

Today was Devin's last day at the school he was attending. This was a decision Derrick and I had made together over the course or the last two weeks or so. Many of you ask "how is Devin doing in school" Devin is doing the same as any other kindergartner who has missed six weeks of school. Over the coarse of time it has become harder to keep up with all the make-up work and school work. Unfortunately, kindergarten has apparently changed and the work load is more then I could have ever imagined.. Nothing is repeated... everyday is something new... repetition seems to be a thing of the past... so if you are absent for a week, you are missing a lot!!!

On Thursday of last week I had an emotional breakdown... as I sat at the table doing make-up work with Devin... I was crying... he was crying and apologizing for not knowing some of the work. It was then that I realized, something had to give!!! I was literally forcing this work down his throat... giving little to no thought as to whether he was understanding it... just as long as the work was done!!

As you have all followed Devin's medical journey of ups and downs. You all know we hit an all time low this past October... he has had a very hard fall/winter this year. Devin carries an extremely heavy load with his illness and constantly being in and out of the hospital. Unfortunately do to the complexity of his illness and the high risk of rejection... Every Day Should Be Cherished!!! Devin's last couple of months have been anything BUT FUN!! hospitals, illness, tests, colonoscopies, school, make-up work, more make-up work, and homework... all at a pace that was to much for me to keep up with, so can you imagine how he feels.

He will be going to a MUCH smaller class... that God willing!! will be working at a nice steady pace... Devin loves learning and has made HUGE achievements since September... for that he should be praised, but instead I feel the focus is on what we need to get done.... Devin needs to learn.... we need to beat the odds stacked against him.... and I need to enjoy every day I have with him!!!

So, as MANY of you are wondering this will sum it up.... We are looking for a better fit to balance.... life, education, and fun!!!

To ALL at the school we are leaving... We are very sad!! Devin has been with these kids for 3 years... they are his friends... he loves them... To the parents, you have all been so wonderful, so supportive, and I Thank You all. To the teachers and staff, Thank You!! The complexity of Devin's illness and the magnitude of his sickness is not easy to understand!!!

As always I ask you to pray for his health! On Monday I ask that you say a little special prayer as he enters a new school... may the transition be easy and may he adjust quick... God knows he deserves it!!!!

Long Day Yesterday...

Submitted by Colleen and Derrick on Wed, 01/27/2010 - 10:52am.

Devin was up at 6AM... the nurse had mentioned on Monday night that we "MIGHT" go home on Tuesday... Thats all he had to hear.. 6AM started... do they have to take the IV out today... will the IV hurt coming out today... when are they coming to take the IV out... It was a long!! day.. 12, 1, 2 no word.. Devin said his ear felt wet! Not giving it much thought I continued sitting next to him. Then all of the sudden he started screaming "blood is coming out of my ear" at that point my sainted husband was on the phone and said "thats impossible he can't have an ear infection he was on IV antibiotics... he probably scratched himself" I remained calm.. got alcohol, and cleaned his ear good. The blood was oozing out of his ear canal.. called the nurse... called the dr... and 3 hrs and 45 minutes later... we were on our way HOME!!! with no real answer... yes, it's bleeding, looks oozy, but doesn't look infected..

We are back up on immune suppression! Waitng to hear from Georgetown about next colonoscopy...

MAY MY DAYS AHEAD BE BORING!!!!!!!!!

.....Time for School Work....

Rainy Day....

Submitted by Colleen and Derrick on Mon, 01/25/2010 - 1:40pm.

Nothing like a rainy day spent in the hospital!!! The window is looking good! Just not sure for which one of us!!! He remains fever free! As of right now I believe the plan is to keep him on IV antibiotics for 72hrs... then switch it to oral for 5 days.. As you all have learned things can change, so we will see.. Then it will be time to re-address his immune suppression...

Good Night...

Submitted by Colleen and Derrick on Sun, 01/24/2010 - 11:37am.

Dev had a good night... He has been fever free :) His cough is horrible!! But he is much more awake and lively today... Actually might do some school work!

The question is... how many days of IV antibiotics, because this seemed to turn this picture around quickly! and the big question.. what do we do about the immune suppression.. Thank GOD for two GREAT doctors!!! That I have absolute faith in... Love them!!!