Day 64....Happy Thanksgiving

HAPPY THANKSGIVING!!!!

of all the years in my life this one is the one that I have the utmost thanks for everything in my life.  My boy is healing, my family is intact and connected and supporting each other....and then there is all of you out there sending light and prayers and energy and angles and good wishes and all the powerful feelings that come with supporting us...so THANK YOU THANK YOU THANK YOU !!!!  We truly feel the most blessed this year.  We cannot say enough to all of you supporters.  You have been an integral part in helping us get through this journey and we will be forever grateful to each and every one of you!!!

Thursday, November 22, 2012

Sean is back in Denver today.  Our sweet little family gets a long weekend together.....sigh....we all need that so much for ourselves individually and as a cohesive unit.

Yesterday Dillon had a quick clinic appointment (which was not scheduled but they asked us to come in) because he developed a full body rash.  The outcome of the visit was a list of reasons why the rash could be happening:  It could just be sensitive skin. It could be GVH of the skin, which is concerning because he is already on treatment for the gut GVH and if it the skin is breakthrough then it could be a very strong case. It could be an allergy to a new med he started on the day he was discharged. It could be the beginning of a viral infection with a cold or flu being the most likely (apparently in some immunocompromised people the first sign of trouble can start with a skin rash).  SOOOOOO we have a plan...basically it is a process of elimination.  Take care of the skin with moisture to help the sensitivities, stop the new med and switch it a different one, watch the rash carefully and if it gets worse start a steroid cream on the skin which could lead to a biopsy for confirmation of GVH, and last but not least is watch for other symptoms that might be signs of a cold or flu (the treatment of which is still unclear to me...do we manage at home or is it an automatic readmission to the hospital).

Dillon had been to the Bass Pro Shop before his transplant and he just loved it.  It is like a museum.  There are stuffed animals and exhibits and games and all sorts of fun things at this store.  Yesterday afternoon he said he wanted to do something fun with Luca....so off to Bass Pro we went.  Dillon gave Luca a tour of the store.  They "rode" ATVs, they climbed in speed boats, they rode the clear elevator that goes through the middle of a fish pond, and the grand finale was the shooting gallery.  Dillon was up and on his feet for about 1-1/2 hours in all....it was amazing and fun....and he was completely wiped out by the end.   This morning his legs are sore from all that extra activity yesterday :)))

Dillon shot a mountain lion, an owl, a rat, a raven, and turtle...plus a bunch of other stuff.