A BOOLOOZA of a Week

Wow...what a week this has been!  I'm thrilled to report that "Transplant-BOO-looza, our first major fundraiser benefiting "COTA for Elise" was a huge success.  We raised over $12,000 for uncovered transplant-related expenses, which is phenomenal. We are so very appreciative to the many people who came out to show their support, the individuals and businesses who donated items for the silent auction and prize drawing, special in-kind donations such as the announcing/ entertainment provided by DJ Greg Dumas, all those who helped tremendously "behind the scenes"....and especially Nicholls Education Association of Teachers (NEAT) who sponsored this fundraiser.  (click "Read More")

On Monday, she saw her pediatrician for her 1-yr check up and vaccinations.  The appointment quickly became very complicated when her pediatrician began to second-guess whether or not she should give her a second dose of her live vaccines (MMR and chicken pox).  Elise already received these vaccines (which are normally first given at 1 yr old) early, per the recommendation of her transplant team, to ensure that she would have at least one dose prior to transplant.  Since she is still pre-transplant, her pediatrician felt that she should give her a second dose to further build up her antibodies.  We resolved the matter by making a call to her transplant physician, Dr. Fishman, at TCH, who recommended she go ahead and receive "round 2" of the live vaccines. 

On Wednesday 10-24-12, Elise was seen for "liver clinic" at Texas Children's. She now weighs 20 lb 11 oz and measures 28 1/2 inches!  She has grown quite a bit and impressed the doctors and dietician!! This brings me to the announcement of a major milestone...she is switching to a new formula for "big girls!" Starting this week, we are transitioning her to Peptamen Jr formula. They are saying that if/when she is able to take in at least 30 oz/ day of the Peptamen Jr by mouth and refrain from losing any weight, they MIGHT consider giving her a trial without the NG feeding tube...which would be the most fantastic news ever!  

So, now for the not-so-fantastic news...

Elise has apparently not outgrown her kidney reflux problem.  She is past 1 year old and still apparently has grade 4 kidney reflux. The transplant team has again consulted the pediatric urologist to devise a plan address this kidney issue prior to transplant. The kidney reflux places her at high risk of urinary tract infections and/or kidney infections, which could potentially cause big problems post-transplant when immuno-suppresents are on board. It seems that the recommendation might be for her to undergo a minor operation in an attempt to resolve the problem now, prior to transplant, and prior to her kidneys incurring any damage. The very LAST thing we need is for her kidneys to be damaged. So, I am now waiting for the urology office at TCH to call me and schedule an appointment, hopefully very soon. 

I will certainly continue to keep everyone updated!!

Thank you all for following Elise's journey, and thank you most of all for all the prayers, love, and support!  It means so much to us!! :-)

Happy 1st Birthday Elise!!

Wow!  Our sweet Elise turns 1 year old today!! With all the uncertainty related to Elise's diagnosis of BA in December 2011, there have been times I wondered if we would ever see this beautiful milestone. We thank God for Elise's early diagnosis and Kasai operation at 8 weeks old which has helped to get us to this point, as we are reminded that babies with Biliary Atresia who are not effectively treated usually do not survive the first year of life.  (click "Read More.")

As I think back of this past one year, it's hard to avoid thinking of the negatives: six hospitalizations, ER visits, clinic visits, four medications twice/day, a 21-day episode of home IV antibiotics via PICC line, NG tube feeds over night every night, incessant blood work, ultrasounds, x-rays, CT scans.  But then I think of how fortunate and absolutely blessed we are to be living here in Houston, a few minutes away from one of the nation's leading pediatric liver transplant centers-- Texas Children's Hospital. I still remember one of the first consultations we had with her treatment team at TCH, when they predicted that she would require a liver transplant before age 2. At that time, and every month since then, they have stated their "ideal goal" for her to reach one year old and 20-22 lb prior to transplant, which dramatically reduce the risk of surgical complications. Today, my friends, Elise is one year old and 21 lb 7 oz!!  With a smile on her face, she says to her transplant team, "Bring it on!"

This next year will undoubtedly present challenges for our family, but we are ready!

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