Hi there readers. I was recently invited by the talented and inexhaustible Jenny Doh to be guest curator at Crescendoh this week. Please visit. Her site is filled with artistic inspiration and each day I've selected some of my favorite online links for you to explore.
I am off to Martha's Vineyard for a very special family vacation, and I hope to have some photos and stories (as well as time to post them) when I return!!
Hope you are enjoying the second stretch of summer!!!
Saturday, August 07, 2010
Excerpted from a letter written by Avery's mom... (I could not have said it better!)
Life, loss and new beginnings...
A year ago today, (Aug 6) Avery received the gift that would save her life! At 2:00 am this morning we received the page we never thought would come to let us know "the perfect heart had been found!"
At 5:00 am she went into the operating room at Children's and 18 hours later at 11:30 pm she came out of the OR and into the cardiac ICU...bleeding and very very sick - to spend the following few months healing and recovering.
As you may remember - Avery was also 100% sensitized to her donor due to the 9 open heart surgeries (8 of which required CV bypass) , 4 ecmo runs and thousands of blood products in her 5 years life. This basically placed her at a VERY (the highest) risk for rejection within her first year especially.
On Monday - Avery had her 1 year biopsy and her results were 100% CLEAN !! No cellular or humoral rejection -- her heart function is perfect and for the first time in her entire life -- she has run , bounced, jumped and giggled as much as she can without turning blue...gasping for air or coughing to catch her breath.
She truly is celebrating a new "birth" (life) day and we are so incredibly fortunate for the miracles we have been blessed with!
What makes this year a DOUBLE gift for us...is something beyond anything we could hope for last year at this time.
A week from today - we will be meeting Avery's donor family for the first time. We have been fortunate to be in touch since last Thanksgiving -- having sent a letter through the New England Organ Bank.
Next week - we will meet his family. We will spend a week together...celebrating the life and getting to know more about the beautiful little boy who now "beats life" into Avery...as well as the extraordinary family who are beyond incredible to share what they have and will with us.
So - as we reflect on how fortunate we were to see Avery start the life she never had before this day last year...we are reminded intimately at what cost that came to another family and what they were able to gift to us at the most horrific time of their life.
They are and will always be our family...
(I will be joining them for part of this trip, and I am filled with gratitude for the opportunity.)