November 2012 - 17 days - Relish in the Good! - DONE

I'm writing an update prior to Thursday for one big reason.  We do not have to go to the hospital this Thursday!!!YAY! (baring any rise in symptoms of course)  Labs were such on Monday that they felt like we could have a break from the regular day!

We are for certain learning to take the bad with the good and relish in the good while it lasts!  The past few weeks of steroids have given Davis better lab numbers, however, at the beginning was messing with his medication levels.  As the steroids have worn off, we are hoping that some of the good numbers are coming from his body beginning to respond to the treatment.  Thus the reason that he was able to make it for the 17 days without a transfusions. YAY!  I know you may say that 17 days is not very long, but have you ever tried the 17 day diet...believe you me it's a long time!! I tried it recently and didn't quite make all 17 days, especially with a road trip in the middle!   As of last Tuesday's transfusions, we are going on 8 days...and counting optimistically to break the 17 days without transfusions record!  

We took a leap of faith last weekend and went on a road trip to St George!

Ryan is "masterful" in his platform jumping.

Slot canyon hikes are a huge favorite

The "Pioneer"  hot tub!

Serious game of Chess at Cracker Barrel !

Picking cotton at the Brigham Young House

We could live here!

St George Temple

Life is GOOD!

We were hoping to have better weather and have some different scenery to take in, experience regularity and fun for a change.  Staring at the same four walls around here is becoming rather boring!  

We were able to stay in a generously offered condo for a few days. THANKS LIFFERTHS!!  The hospital was close by if needed, however, we only waved as we passed by the doors, optimistic that we would not need a visit this time around!  The weather didn't quite cooperate and Jeff was delayed on a business flight and Courtney had to work so they were unable to join us.  It was still so fun to see smiles all around as we had good enough weather two of the days to hike and swim.  

Davis was willing himself to participate in all the activities possible as he still has a bit of immunity(not enough to do most things), but enough to have faith that he will be protected if we venture to try a few needed sanity boosting activities here and there.  I am so proud of his continued determination to try, despite his own recognition often times in the middle of trying, that his body just won't do what his mind is willing!  He endlessly remains positive and just readjusts to a different level. 

  
Let's just say that Emily was thrilled that his level kept him close to her this trip!  He was her hero, as he hiked along side her and helped her up and down.  She clung to him and they were both entertaining and entertained!

It was a moment in time to simply pause and remember the beauty and hope of life as we hiked.  We took in the fresh air until it rained and the wind blew.  We even had a rainbow over the red cliffs as we drove away!

Although exhausted and having a few symptoms from the medication, he is dedicated to finishing strong in his school work for the first term.  He has been working on all the missed work every minute he feels up to it with encouragement that he is retaining the information and doing well on quizzes and tests!

We got a lab back today that one of the medications is at a dangerously high level and he is experiencing headaches and stomach pains as well as impacts on his kidneys.  We will watch and repeat labs.  As for now, the dosage has been altered once again and we will wait and see!  He smiles and the effects of the meds are lightened when he hears that he gets a break from going in today!

Be grateful for the tiny details of your life

and make room for the unexpected and beautiful things.

Snow fight at the top of Kolob Canyon

Cove Fort

 

As we walked through the snow and bitter cold to tour the fort
and hear of the stories, we were so grateful for our warm car to
get into and a warm comfy house to sleep in that night!

Happy Thanksgiving week everyone