We heard back on Little Monkey’s blood test finally. The results were what we expected, not what we wanted. He had a blood phe level of 9.6. This is lower than the last reading but still not acceptable. We have stopped the Kuvan and they are calling him a non-responder. Part of me is bummed about the outcome but at least we know. As Amy said one day, when Little Monkey was born, they didn’t even have Kuvan as an option. It has been almost five years…and in another five years there might be another option.
Little Monkey Update