A Little Boys Amazing Journey & A families balance between... QUALITY & QUANTITY...
So TRUE....
Don't think of organ donation as giving up part of yourself to keep a total stranger alive. It's really a total stranger giving up almost all of themselves to keep part of you alive. ~Author Unknown
Monday, September 27, 2010
These Days...
I know many have been saying... No News Is Good News... Well Yes & No... we have not had any MAJOR setbacks... and for that I am Thankful!!! But, life continues to be a challenge... We are currently on only (1) anti-rejection drug because Devin has had some problems tolerating the others that they have tried... That is NOT good and does not work in our favor as far as longevity goes... We have had some issues with diarrhea and absorption.. again making everyday living challenging...
As for school it continues to be a challenge... for many reasons!! Before he puts his little feet on the floor in the morning his plate is full and the burden he carries is far beyond what most can begin to understand.... He starts his daily routine around 6:45 AM... Medication, Tubing Feeding, Blood work, & so forth... Their is no running around, no cartoons, no time to play... Then off to school we go... Home from school to tutors, speech therapy, therapy, and occupational therapy... Homework... and off to bed by 7:00 PM... During the day he gets tube feeding, blood sugar checks, insulin, meds... and I haven't mentioned the doctors appointments that we somehow manage to squeeze in!!
All summer I begged God for a sign... A sign to guide me in making decisions... A sign to help me know what's right or wrong... I do believe he gave me the signs I begged for but I believe I closed my eyes...
*** The first one came around July 4th or so when I came across a beautiful child that had received a transplant almost 4 years ago... Unfortunately shortly after coming across this child she lost the transplant and now is fighting so hard to make to re-transplant... Almost 4 years after her first one!!!
*** Next was a person whom I had been in touch with through his daughter... 10 months out of transplant he has lost the transplant...
*** August came when I open my facebook to read about a girl who had lost her battle a couple of years post transplant... AHH!! how does this happen...
*** A daily reminder is a little girl who is dear to my heart who continues to battle everyday...
Yes, I do know a few kids that are doing well... But they are truly in the minority!!!
Today, as I sat sipping my tea I came across something very interesting... Less then 50 % of bowel transplants make it 5 years.... and of the ones that do most need to be re-transplanted....
I continue to battle with accepting... accepting that this is life... this is Devin's life... Although I want bigger and better I can only make of it what his health will allow... I push and push and push and push... But the one thing that happens... while I push precious days slip by... where is the fun, the laughing, the silly time.... I always say to Raymond and Caitlin... make every moment count... make every picture precious... memories you will have forever...
As for Raymond & Caitlin... Raymond is having surgery Thursday... My heart is breaking for him! He is so nervous and scared.. I wish I could make it all go away but I can't... so I will mother him back to health... Caitlin is doing great! Preparing to take the high school entrance exams in November...
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3 comments:
I wish I knew how to make it all better. It's proving to be so much more difficult than I ever could have imagined.
((hugs)) - there are no words...
I agree. No words.... Just know I love you friend, and am praying for you and your sweet family!!!
Continued prayers for your family. Zach will turn 3 on October 14 and we continue to celebrate every day. God bless you!
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