Blessings

Praise God, from whom all blessings flow.  

The past few days have certainly been about blessings.  For those of you who follow me on Facebook, some of this will be redundant, but hopefully I'll be able to add a little detail to that which you already know.

"The Greatest Hero I Never Met was the Organ Donor Who Saved my Daughter's Life."   

I have some incredibly special news to share. As some of you may know, about 1 month after Elise's liver transplant, I wrote a letter to her "donor angel's" family to express our gratitude for their selfless decision to DONATE LIFE during their most tragic time. I had no idea whether we would ever hear back, but oh how I hoped and prayed that they would receive our letter and want to share their story with us. We released our identifying information w/ Life Gift about 3 weeks ago and waited. Yesterday afternoon, our donor angel's father sent me an email, thereby establishing contact between our families, and he introduced me to our donor angel, Julia. 

Julia was a 20 y/o loving mom of a 3 yr old little girl...a daughter...a sister...a friend...treasured by so many. She loved to eat Pecan Mexican popsicles, mexican food, and Raising Canes chicken. She loved music, especially Coldplay. An honors student, she went to college on a partial scholarship and was a nursing student in Houston, almost finished her clinicals, and looking forward to saving lives. Although her life was suddenly cut short, she has indeed saved many lives, and she will continue to do so through her legacy. She is missed every single moment of every single day. 

Shortly following Elise's birth and diagnosis of Biliary Atresia, we were told that Elise would likely require a liver transplant before age 2 in order to survive. My friends, Elise will turn 2 years old in October, and as you all can see, she is thriving, with a wonderful prognosis for a long and happy life! But we know that this would not be possible without our "donor angel," our hero, and her family. According to her father, if we want to thank anyone though, it should be Julia and God, as she registered herself as an organ donor; he says he simply fulfilled her last wish. For all this, we will be eternally grateful.

PLEASE consider registering to be an organ donor...save lives....be a hero. 

As I reflected over the past few days, I have been overcome with emotion, especially yesterday.  I cried thought the day, and various things set me off.  At one point, I had to get out of the house, so in honor of Julia and National Ice Cream Day, we drove to Pearland, to the nearest La Paltera, and ordered Pecan Mexican popsicles.  I loved seeing Elise's delighted response!!   Although Ethan didn't want much to do with it, Elise ate her entire popsicle and was not very happy when it was gone. 

This past Friday, I received a call from Elise's primary hepatologist (liver doctor) and her transplant coordinator with something of an update regarding her last not-so-good lab results.  They apparently received the results of additional tests which indicated Elise most likely had a virus causing the elevated liver enzymes on her last check; her EBV was slightly elevated again and some of her other counts were out of range. So, the med changes, including the steroid order, was canceled.  That was really GREAT news....not just because it meant less meds, but because a toddler with "roid rage" is a difficult scenario with which to deal. 

This morning at 7:00 am, I had to bring Elise for her scheduled labs at Texas Children's.  It was an incredibly long day waiting for results.  BUT, at approximately 1:00 pm, our transplant coordinator called me with the most amazing news:  Elise's liver panel looks terrific!!  Beautiful! Her liver enzymes are almost back to perfectly normal, but well within the team's goal range already! 

And her liver function tests are great! 

FOR anyone interested in the specifics, here you go:

Last week, 7/16/13:      AST 154/  ALT 150/  GGT 36/  direct bili  0.

This week, 7/22/13:    AST 61/   ALT 79/     GGT 31/  direct bili  0;  albumin 4.

Also, the goal for her Prograf (immunosuppression) level is 3-5;  her current level is 4.1.  Yay!! Our next "liver clinic" appt will be next Wednesday 7/31/13....no more labs until then!!

Thank you all for continued prayers and support and for following Elise's journey.  Please join me in praying for our "donor angel,"  Julia, and her amazing family. While tomorrow marks 4 months since Elise's liver transplant and "gift of life," I remind you that it also marks 4 months since this family lost Julia....a most beautiful life and beautiful soul.  As I mentioned earlier, we are blessed to have received such a meaningful response from her family, and we look forward to hopefully meeting them sometime soon!

Erin