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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