Tis' The Season

Submitted by Colleen and Derrick on Sun, 12/06/2009 - 2:29pm.

Devin is ANXIOUSLY!!! awaiting Christmas.!! The excitement is running (literally) through the house. Yesterday I made the mistake of letting him get the Chipmunk Christmas CD.. Oh boy!! It was like giving him a shot of caffeine followed by 10 more..
He has been battling a cough since his last hospitalization. Getting no better or no worse.. he hasn’t had a fever and has PLENTY of energy. We see the infectious disease doctor tomorrow, which I am looking forward to. We saw the GI doctor last week and she was concerned about a persistent cough in an immune suppressed child. Anything that causes her concern causes me sleepless nights. We are heading to Georgetown Wednesday for a colonoscopy and endoscope on Thursday. Many have been asking if this is a routine check-up.. No!! this is the follow-up to October’s illness. Unfortunately the drugs that were used in October to keep Devin alive are very damaging to the Intestines. They had no choice… they did what needed to be done and now 8 weeks later we will see where things stand. He “seems” to be doing okay, but on a microscopic level that may not be the case. The one major set back is… he is not eating by mouth anymore … ggrrrr No one can tell us why.. it has been seen before after children get as sick as he was in October. They claim in time it does resolve!! He is on full feeds via his feeding tube. Is that possibly the issue?? Once all his biopsy’s and results come back… and we know where we stand. I think we will become more aggressive with cutting calories to try and get him to eat.

I am feeling rather stressed and overwhelmed these days… I am praying he makes it through the holiday season healthy!! I am not thrilled about going for a procedure so close to Christmas. But Dr. K knows best.. I am very concerned that one day this cough is going to blow up into something major. I am trying very hard to keep Devin on track with his schoolwork, finish all my shopping, get the house in order, and buy a car.. Yes, my lease is up Jan. 7th. Thanks to transplant I am 13,000 miles over!!! So this time we will be buying! Although I want to enjoy every moment of the holiday season, I just can’t see that happening!

Please! keep Devin in your prayers!!! Please pray that he make it through the holiday season with no major setbacks.. Devin’s Christmas pageant is Dec. 16th … Please God let him be healthy.. He is SOOOOOO! Excited. He is the cow! LOL

Happy Thanksgiving!!!!!

Submitted by Colleen and Derrick on Wed, 11/25/2009 - 3:50pm.

This has been one AMAZING year… filled with both tears and cheers!! We have so much to be THANKFUL for this Thanksgiving….

** Devin’s “Gift of Life”. Through the unbelievable kindness of a complete stranger during their darkest moment… Devin received the most precious gift one could ever ask for… LIFE!! Forever, we will hold our precious little donor angel in our heart!!

The doctors, nurses, respiratory therapists, and child life specialists at both Georgetown and Robert Wood…. We went to Georgetown last February 22nd as complete strangers and became part of the transplant family.… Then there is the GI doctor and the nutritionist at Robert Wood, if it weren’t for them this journey would never have been possible… THE ENTIRE TEAM… at both institutions have helped us through this very difficult fall… and it is their dedication and outstanding medical care that allows Devin to celebrate Thanksgiving today!!

For all the people we have met through the course of this year… in the hospital, on the internet, our faithful site followers, Healing Spaces, COTA, MACS, the cards from all over the world!, gifts from near and far, kind words written to us, and ALL our "Prayer Warriors"… that have proven miracles do happen!!!

Our family and friends who are their to support us every step of the way!! My mom who is my right hand… and is always their to step in when I have to step out!!! Through the peaks and valleys of this journey they are by our side and never give up..…

Raymond & Caitlin…. Two great siblings… that have not had an easy year!! They keep up with their work, activities, and never give up hope! while patiently waiting for us to return home..

So, to all I wish you a Happy Thanksgiving!!!
Thank You all for your love, support, & prayers….

Great Causes...

Submitted by Colleen and Derrick on Thu, 11/19/2009 - 12:23pm.

Below are two great causes that we hold near and dear to our heart...

The first one is... Healing Spaces.. They were the group of VOLUNTEERS that came in and gave Devin a much needed room makeover.. They are unbelievable people!!! who give room makeovers to sick children..

The second is... The Children's Organ Transplant Association... who are a group of very dedicated people.. who make sure NO child goes untransplanted do to financial difficulties....

Please click on each picture below and vote for these two great organizations... Spread the word... pass it on.... facebook... my space... blog... email... Chase is giving away the money!!! All you have to do is vote...

Devin's Big Night...

Submitted by Colleen and Derrick on Mon, 11/16/2009 - 9:48pm.

Today as I watched Devin roam around the house... doing the usual... TV, PSP, Play Station, and SCHOOL WORK... I made a decision... I told Devin that after he completed all his school work in a timely fashion I had a BIG surprise!!! Needless to say we did a lot of work in record time.. LOL

I let Devin play in his CHAMPIONSHIP baseball game... The excitement was that of Christmas morning!!! He was running all over the house yelling and screaming.... He immediately ran to put his uniform on, which I was smart I put all his stuff together before I even told him and I waited until 5:15 for a 6:00 game.. Perfect!!

I brought all his own equipment and gave him a briefing on not letting anyone use it and staying at least an arms distance away from everyone..

It was GREAT.. we arrived and I began to explain to the coach about the equipment, after two words he said "say no more" Devin was in Heaven!! They let him catch the entire game!! A HUGE thanks to the coaches!!! This made his night.. that is his favorite position... Jorge Posada has nothing on him!! LOL... To top the night off.. He got a trophy after the game....

What a great night for Devin!!!
hopefully one of the other moms took some pictures.. mine didn't come out :(

I Guess It Should Be...

Submitted by Colleen and Derrick on Fri, 11/13/2009 - 6:57pm.

Music to me ears… “I’M BORED”, “IT’S SO BORING IN OUR HOUSE”, “WHAT ARE WE DOING TODAY”, “ARE WE GOING OUT TODAY”, and the highlight of the day… “IS IT TIME TO PICK UP CAITLIN & RAYMOND”….. All many times a day in an assortment of tones!! The only time he seems to disappear is when I say “lets start your make-up work”… then he is very busy!! Oh.. it’s going to be a very long winter…

I realized one thing today… if this hospital/house pattern continues by Spring I will definitely be ready for “THE BIGGEST LOSER” Which Caitlin will be very happy about… being that she wanted me to gain the weight to try and win the money.. LOL oh to be 12!!!

I am also looking for a germ free job… and I think I came up with one!! We have been to so many hospitals and different PICU’s… I think between my years of PICU nursing and my PICU mother experience… I should help design PICU’s and PEDS hospital rooms.... Not really sure that there is a need but sure sounds good.. My next idea is helping people with special needs children travel.. Now, if I win the lotto I’ll help financially, but until then…. I have knowledge of what’s needed to make it all run smoothly… Maybe I can find consulting jobs?? LOL....

Devin and Derrick are both feeling better every day.. Derrick I think is dragging it out a little... home alone, in bed, food brought to him, watching TV... A guys dream!! Devin is ready to goooooo!!

Our Dear Friends...

Submitted by Colleen and Derrick on Thu, 11/12/2009 - 3:55pm.

Today we need to share our prayers... I am sure you all remember me asking for prayers for two families at Georgetown... Our little friend Thomas is back in the hospital with a very bad infection.. and our friend "A" (didn't ask parents if I could use her name) is right now having her transplant bowel removed because of rejection after 5 years!!!.. She is not getting a new one at this point they are just trying to improve her quality of life and free her from pain....

Prayers!!!!!

Boy O Boy...

Submitted by Colleen and Derrick on Wed, 11/11/2009 - 7:20pm.

Derrick's flu is negative... which is actually worse for our situation. Will Devin now catch this illness... aaaahhhh!!! I HATE FALL/WINTER.....