A YEAR in review

Geeez!  June 17, 2015 was the date of my last post! I knew it had been a while, but I didn't realize it's been a YEAR! I've gotten several emails over the past few weeks from readers and fellow "liver moms"--some who were interested in establishing that "no news is good news."

You know...it's honestly a little bit of everything.  There have certainly been times this past year that I didn't write because things were peachy, and there was no sense of urgency.  But, there have also been lots of times that have been very "touch-and-go," and it was all I could do to keep things together. We've had labs every 1-2 weeks, a couple of hospitalizations, a "Make-A-Wish"trip, and a new diagnosis over the past 12 months. I'm happy to report though--generally speaking-- I'm calling this past year a win! Whatever has come up....we've come out on the other side a little bit better for it.

So, last July, while in Louisiana for my cousin's wedding, we ended up in the ER. Turns out this was likely related to the "new diagnosis" that I'll be getting into....but we had no idea at the time. Elise just suddenly spiked a fever, and her vitals were abnormal.....but nothing else was found.  Her liver panel was fine, which was re-assuring, ears looked good, chest x-ray was normal, viral studies were negative.  My cousin-in-law, Dr. Kyle Guidry helped to coordinate things so that everything ran smoothly, and our ER doc and nurse did a fantastic job of coordinating w/ our liver team at Texas Children's . The decision was ultimately made to discharge us home, and we'd return to Texas and follow up at TCH

ER visit at Thibodaux Regional Medical Center

Make-A-Wish.  I simply can not say enough about this amazing organization. Let me preface this by saying that the mission of Make-A-Wish--which many do not realize-- is to grant the wishes of children with life-threatening medical conditions; the mission is to grant "a lasting wish," not necessarily a "last wish." Back in August, two wonderful volunteers from MAW came over to our house to meet with Elise.   They talked to her about her favorite color, her favorite food, her favorite animal, her favorite things to do, where she would like to go, and what she would like to go.  She would come to call these ladies --Brenda and Gracie-- her "wish fairies....and after they'd receive medical clearance and verification from her doctor...they'd be back for the "reveal." Her "wish" was to be granted!  More on that later....

Later in August.. Elise enjoyed fabulous liver check ups and labs, and she participated in a photoshoot with LifeGift for the 2016 Calendar.....   Miss March!

Elise presenting the finished product....the 2016 LifeGift calendar

November 2015.....annual family pictures (because the 8,000+ photos I have on my iphone is not enough!)

Photo by Kristen Purcell, La Vie Photgraphy www.laviephotography.net 

December 2015....making Christmas memories....

Christmas at BayBrook Mall....just prior to pics with Santa! :-)

January 1, 2015....we celebrated New Year's Day with our "liver family" at Kelli and Ben's house.  I was so excited, we got there about 6 hours early......haha....but that's a story for another day.   Potluck dinner....roasted marshmallows.... and our annual ornament exchange... it was a perfect evening!  We truly LOVE our liver family! 

January 28- February 2, 2016  Elise's Make-A-Wish Trip-  Disney Aulani in Hawaii!  Elise wished too go to Hawaii where she could go to a "big beach," "meet a dolphin," and "see Mickey and Minnie" and her other Disney friends. She and Ethan were able to do all of these things and more!  It was a fabulous trip for her and for the entire family. Grammie and Paw decided to meet us there in Hawaii...because you know they don't like to miss out on anything!

Our Make-A-Wish coordinators, Brenda & Gracie, when they came over for a surprise "reveal!" Elise learned for the first time that her wish was going to be granted and the details of our upcoming trip....2 days later! 

OFF to Disney Aulani in Hawaii!! 

Breakfast with the Characters! 

How's this for a "big beach?"  OMG, the kids were in HEAVEN! 

Ethan and Elise had the pleasure of meeting "Lula," a 32 year old dolphin at Dolphin Quest O'ahu.  

Make-A-Wish arranged for us to go Snorkling at the private lagoon which is part of the Disney Aulani property! :-)

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Meeting Stitch! 

GOOFY found us by the pool!

February 7, 2016.... Elise admitted to the ER at TCH with high fever, and her vitals were very much out of normal range.  She ended up testing positive for Flu and was admitted by liver team to the floor. The liver and endocrinology teams were very concerned with the severity of Elise's symptoms; that is, although we of course realize she is immunosuppressed, she became much sicker much faster than what would be expected in patients with her same immunosuppressed status. And so, we were to follow up with Endocrinology for further testing post discharge, and that led us to the new diagnosis which I previously mentioned-  Adrenal Insufficiency.  She is now prescribed "maintenance" hydrocortisone daily to replace the natural cortisol that her adrenal glands are currently no longer making, and she has "emergency kits" of Solucortef injections which are to be administered immediately should she ever become severely ill, followed by a trip to ER of course. 

 

On my birthday, March 9, we went to TCH for Elise's 3rd Annual Liver Transplant clinic. Everything seemed to be in check, and Elise was transitioned from the liquid forms of her medications to the pill form--something Elise has been BEGGING to do. Ever since then, she's been taking pills with no problem.

Liver Clinic - March 2016- with Dr. Fishman and our transplant coordinator, Sarah.

On March 23, 2016, we celebrated Elise's 3rd Transplantiversary!  I made her a huge cake, and we did a balloon release in honor of her "donor angel," Julia. It was a small celebration with just Elise, Ethan, David, and myself.....but a celebration of LIFE, nonetheless!

Happy Transplantiversary, Elise!

In April 2016... Elise's liver enzymes began to climb over the course of 2-3 weeks, so her team brought her in for a liver biopsy.  The biopsy ultimately showed mild rejection. What was a little tricky was that David could not get more time off work, so Ethan had to stay with Elise and me at the hospital for the entire 5-day inpatient stay. We had several friends offer to come pick him up and keep him for us, but the truth is that when it got down to it, he didn't want to go anywhere; he wanted to stay at the hospital with us. 

 

Elise was discharged from the Texas Childrens just in time to participate in her very 1st dance recital with Chara's Christian Dance Academy AND her Pre-K graduation! We have learned that liver disease and transplant is not just part of our history; rather, it is part of our journey.... a journey we are blessed to continue. If God brings you to it, he will bring you through it!! ‪#‎blessedbeyondmeasure‬‪#‎prekgraduate‬

Now, over the past 6 weeks are so, Elise has come off her heavy steroids, and her liver enzymes have been looking great! She made a remarkable recovery from this most recent episode of rejection, and we've been preparing for the Transplant Games of America 2016 in Cleveland! It was  HUGE success....we only just returned home within the last 48 hours as I write this post. I can't wait to tell you all about it, but it's going to require a post of it's own...... So STAY TUNED!

Let's GO....TEAM TEXAS!!!  Cleveland Bound!!