Thursday, February 23, 2012
Drum Roll Please...
THREE YEARS....
and sooo much accomplished....
2009.. was the hardest year thus far...
Transplant... one month in the hospital... and 6 weeks away from home!
An acute life threatening event 8 months later which left Devin fighting for his life...
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| 48 hours post transplant |
October 9, 2009
2010.. was better but still difficult...
We started the year in DC with mild rejection.. We spent on average 5 to 7 days of EVERY month in the hospital with re-occurring pneumonia... Weeks of IV antibiotics & PICC lines. In March Devin got diabetes.. By May he was REALLY struggling emotionally. On the good days we lived!!! but they were few and far between. His comfort zone was home laying in bed. (You can read June 10, 2011 entry in the Blog Archive section)
September 2010
2011.. was DEVIN’S BEST year thus far...
* In January we stopped tube feeds! 3000 cc per day for almost 2 solids years! STOPPED
Devin began eating like a champ!! SUPER HUGE accomplishment for someone who was unable to eat by mouth for the first 5 years of life..
* With the stopping of the tube feeding... we solved the "monthly pneumonia" issue :) and yes mama was right!!! this boy was aspirating!! (even though they still won't admit it!)
* In February we came OFF the insulin pump!!
* In April we removed his feeding tube!
* In September we fulfilled a HUGE wish of Devin's... He returned to school!! As he viewed it,
"I FINALLY CAN BE NORMAL"
* In October we celebrated Devin's ((8th)) birthday... Yes, 8th!!
Devin's prognosis in the beginning was 3 to 4 years!! Shortly after his 5th birthday he had his bowel transplant... Knowing the first year was a milestone... the 5 year mark is the true test!!
* In November we had his last whole closed.. they surgically closed his feeding tube site!!!
Granted his abdomen looks like a road map gone bad... but we'll take it!!!
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| Devin's battle physical scars.. |
* In December (without giving it any attention) we marked 1 year hospital free for illness!!!!!!
HUGE, HUGE, HUGE accomplishment!!!
Christmas 2011 (Last year we had in a PICC line for IV antibiotics)
2012... different year.. different struggles...
Devin continues to battle Liver issues... HIGH Liver numbers equal exhaustion, cranky, crabby, nasty, grumpy!! This in turn has impacted his schooling :( I know in the grand scheme of the issue at hand health comes first... BUT school is SOOO important to Devin :( I pray we can get a handle on these Liver issues. But considering the medications that keep him alive are stressing his Liver! I’m not completely hopeful.. :(
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| New Years Eve 2012 |
For TODAY we are CELEBRATING !!!! 3 amazing years!! We’ve had ups and we've had some downs.. But we’ve achieved MORE milestones than I ever could have imagined!!
Our philosophy has ALWAYS been QUALITY of Life...
Devin, LIVES LIFE & LOVES LIFE.. even during hard times, he knows nothing else!!
He is truly blessed to have Raymond & Caitlin!! and they are blessed to have him!! He has helped us to grow as a family! He has helped us to appreciate the true meaning of living!! and has given us a clear perception of what is important in life!!! We NEVER take a day for granted!! We live for the day and the memories we have made and will continue to make on this journey!!!
Last and by far not least... "Our Little Donor Angel"
Without this sweet little angel and the gift that was given to Devin surely Devin would not be here today!!
*A TRUE GIFT of LIFE*
RIP Sweet Angel!!
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7 comments:
Wow, I don't even know where to start or the right thing to say...I started to think back to that baby I saw in the carriage at GKLL and thinking what a lucky baby his is to have been landed in their care, then as the years went on I grew to love you! yes, we dont see each other often, but when we do we pick up right where we left off, cause you are my little Mets buddy, even if you and your brother don't want to admit it!! I am Blessed to have come to know you and your family, as you, along with them are miracles and Angels. God Bless you today on this MAJOR milestone of 3 years and may continued health, love and blessings be yours and your families always...remember when you want something mom won't get you, you know who to call! ;) Love, Kristen & all the McCormacks xoxoxo
WOW!!!! 3 years!!! Devin, you are an amazing boy with an amazing story. You and your family are an inspiration to us all. May your liver issue be a "blip" in the long road of life you have ahead of you. We love you!!!
xo Jen, Mike, Benjamin and Ella
WOW three years. I'm so proud of how brave you are. Your a great boy and an inspiration to everyone you meet. I glad I became a small part of your life. May God continue to bless you and watch over you.
All the best Little Star, may your light shine brighter after your op and the sunshine on you with health and laughter :)
Love You Charmaine (South Africa)
3 YEARS!!! That is definitely something to be celebrated - perhaps with food?!?! Dev, you are an inspiration to everyone who had had the privilege of knowing you. Your smile brightens this world an it is a far better place because ou are in it!
I remember the first time I saw that angelic little face- NICU Room 5. You drew me in immediately with those big brown eyes. How far you have come since then, all the hurdles you have jumped, all the all the obstacles you have overcome, what accomplishments you have made. I know not one soul on this earth with a stronger will to live than you. You teach the rest of us to appreciate each day we have. I truly believe in everything for a reason- you and your family were meant to find each other, so that together you could laugh, learn, love and live life to the fullest. I love you all and am so happy to celebrate this day!!
XOXO,
Erika
I can't believe it's been 3 years. It seems like yesterday and 100 years ago at the same time. Congrats on 3 years!!!
Congratulations devin!!! U are amazing ur so strong n have such an amazing family I wish u many many many more wonderful HEALTHY yrs :) god bless u and your family
Phillips family
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