Our Story
Kennedy was diagnosed with OTC Deficiency, a type of Urea Cycle Disorder, this past winter. This amazing little human is our world, our hearts, and a fighter. She is our warrior baby (really a toddler now!). Urea Cycle Disorders exist on a spectrum. This is a disease where the individual's body is unable to properly break down and remove excess protein from the body. This causes the protein to build...
Continue Reading »Updates
3 Month Post Transplant Update
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We are happy to share that Kennedy has been doing well since our update in September! Kennedy had the one initial episode of rejection at the end of... Continue Reading »
One Month Post Transplant + Liver Rejection
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We are officially one month post transplant today. It still feels surreal most days - that Kennedy has a new liver and we are no longer waiting. ... Continue Reading »
Post Op Days 3 – 7 (What day is it??)
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We had every intent of updating this page more often throughout the week, but, as you can imagine, having a little one in the hospital takes up all... Continue Reading »
Transplant + Post Op Days 1 and 2
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It feels strange to be here - on the other side of waiting for K's transplant. We had no clue when it would happen, and were surprised when... Continue Reading »
More Photos of K!
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Hooray for Transplant Day
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We got to join Kennedy around 10 am this morning. Lots of people still checking in and keeping a close eye. Technically speaking everything went very well. Just... Continue Reading »
Transplant Time
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The Tomsche’s got the call that there is a match for Kennedy. She is currently admitted to the hospital and ready for the transplant to happen at 11... Continue Reading »
A Day in the Life Part 1
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We thought it'd be helpful to do some "day in the life" posts to understand the implications of Kennedy's genetic disorder. If any of you are like us (Nick... Continue Reading »
Another Trip to the Hospital
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Kennedy unfortunately had to be admitted to the hospital on Tuesday. Her ammonia had been a little off here and there since the previous week, and was over... Continue Reading »