Tuesday, August 04, 2009

Visiting Alyssa at the hospital

Alyssa is expected to be released from the hospital Tuesday morning after a 12 day stay. When she was three days old she started to appear very jaundiced. Her bilirubin level was so high that they moved her to the special care nursery and ran some tests. She had been breastfeeding really well but it turned out that's what was making her sick. She has a very rare genetic disorder called galactosemia. Her body is missing the enzyme necessary to break down galactose which is in milk and even some fruits and vegetables and legumes. If the galactose builds up in her system she can have organ damage. This is very different from lactose intolerance. Once she was switched to soy formula she immediately improved. We're all going to have to be very responsible for the health of this beautiful little girl. Mike and Kristen are very lucky to have a geneticist that specializes in galactosemia right here in Boston. The doctor said she was the only person this year in Massachusetts to be born with the disorder.

So we've spent a lot of time back and forth. One day we were in the parking garage just outside the elevator. M&J decided they wanted to hang out there for a while. Jackson was playing the drums on the "wet floor" cone and Madison was sitting on the windowsill singing really loudly.

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