Little Monkey Update

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.

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3 Responses to Little Monkey Update

  1. amypaul says:

    At least you tried and now you know. And, as Sandy said when Paulie was barely two weeks old, “PKU is just a PART of who he is.” Although it can be all-consuming for you sometimes, it’s just a small little part of him. It doesn’t define who he is. It’s just a part of our lives now and you are masterful at working with it in a way that’s the best for him. You’re the best mom he could have!

  2. Stay positive! I know how hard it is and how difficult it is to wait for the blood test results. Keep up the great parenting that you are doing, and who knows what the future may bring. 🙂

  3. Yes, you are right – in 5 years hopefully there will be other options besides Kuvan. It’s so nice to hear your experiences…keep doing the wonderful job that you are!

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