5K Tomorrow

IF you are joining us for the NJ Sharing Network walk/run tomorrow....

I will be getting there around 8:00am
   Run begins at 8:30
   Walk begins at 10:00

*** I will be bringing bagels and fruit... Trying to coordinate something after is difficult because we don't live around there and people are coming from all over... Therefore I thought this might work best.
*** My t-shirt order got screwed up... It's the same shirt as last year soooo PLEASE re-use last years shirts if you have one. I do have some shirts but mostly L and XL... You can also wear an electric lime green if you have one!
*** If you txt me in the AM I will let you know where we are!

THEY ARE EXPECTING A VERY LARGE CROWD PLAN ACCORDINGLY!!!!
Their will be fun things for the kids to do... face painting... bounce rides...
Come early and read the UNBELIEVABLE stories that make this day possible!!!

NJ Sharing Network Run/Walk

PLEASE.... Consider coming out and supporting organ donation awareness... We walk to remember those who gave the ultimate gift LIFE... To honor those who received... and To give hope to those that are waiting..
This year is big for Devin... ((( 5 ))) years since transplant... in the bowel transplant world thats truly something to celebrate!!! Please join is to walk!  & if you can't join us please consider donating to Devin's Got Guts!!!!

http://5k.njsharingnetwork.org/faf/donorReg/donorPledge.asp?ievent=1089520&lis=0&kntae1089520=920373B85A3A4E41863D3C2D6EEC5622

Devin had his 5 year (routine yearly) colonoscopy and endoscopy yesterday... After a marathon bowel cleanse that started Saturday (still didn't clean him out) and clear liquids for 2 days... the scopes are finally done!!  Everything "looks" BEAUTIFUL... but it's NOT official until the biopsy results come back, hopefully Wednesday or Thursday..
Other than that... a whole lot of blood work... and some fine tuning of his anti-rejection meds!

The one thing I learned this visit... I'll NEVER be able to let my guard down!!! He has been on Prograf and Prograf alone!  He's allergic to Rapamune.... The kidneys HATE high Prograf levels.... His has been 9 to 11.... We need a level of 5 to 6 but on one agent it's difficult because if it dips to 3 or 4 thats when rejection becomes a problem (in isolated bowels).... Of course I want to leave EVERYTHING as is... BUT they clearly told me if we do that we will be looking at a kidney transplant along the way!!!
So we are going to try and drop his Prograf level to 5-6... If we hit 4 we'll add cellept (another immuno suppressive agent)  which is not absorbed well... and doesn't work as well in bowels!!!  SOOOOOO as I celebrated 5 years... I was deflated with one trip back to reality!!!  It will ALWAYS be a balance!!!

Our "5" Year Celebration...

So much to be thankful for... BUT most of all... Devin's little donor angel! May he rest in peace &  May eternal light shine upon him...

Below is a link to a slide show of our week celebrating!
http://www.smilebox.com/playBlog/4d7a6b354d5467354d54593d0d0a&blogview=true