medical update

Where do I begin with this post?! If you are new to the site, it is important to know that Matilda (my now three year old girl) had acute liver failure when she was 9 days old. She was moved from our small town in upstate NY to Syracuse, and then transferred almost immediately to New York City. That night they put her on life support and I was told that she had swelling in her brain and probably wouldn't make it.

At six weeks old, she received the most precious gift - a liver from a two week old who had passed away. Since then we have traveled to New York City every three months for hospital visits and check-ups. We all have an emotional bond to the city for saving our Matilda, for taking care of us when we were alone, and for providing so much hope during our cloudiest days.

This last visit felt like a milestone. We hadn't been for a visit in six months, and yet we feel more carefree and confident about our situation than we ever have. Maybe we have grown used to the process of post transplant care or maybe we have just gotten to the point where we trust that Matilda will be fine.

To us, she is a normal three year old. She plays typically, she loves to run around, she gets mad and throws fits, she loves chocolate, and reading books. Totally normal. Sure she has to take her doses of medicine twice a day, have labs done once a month, and make more frequent trips to the doctor's office, but that too has become normal.

Best of all, the transplant team agrees. She is one healthy and perfectly normal three year old. They even gave us permission to start pre-school activities and enroll her in classes. So this medical update is more of a celebratory high five - we have all made it so far and life couldn't feel more fantastic!

share sheet