Monday, February 26, 2007


Mira is doing much better today. She still has a slight fever, but her appetite was in full swing for dinner - she ate some chicken and sweet potatoes, her favorite! We hope that she is on the upswing now.

We had a long discussion with neurology and came to the conclusion that we should keep Mira on the Diamox for a while longer, at least until she is healthy for certain period of time. She is currently at 18mg/kg and will go up in dosage to around 30mg/kg, which is about the maximum dosage for Diamox, before you start to see undesirable side effects. So far, it hasn't done much for her, but we are willing to continue at a higher dosage, since she is already on it. It may take a few weeks before we abandon it, should it prove to be ineffective.

The nurses at Children's Mercy are wonderful with Mira's situation. Being as busy as they are, they are always responsive and caring, helping us navigate through all of this as best as we can. Mira is going to start having regular neurology appointments, probably every three months. Her next one is in May, but we keep in close contact with everyone at neurology week by week to let them know how she is doing.

Coming up....................Vegas!!!

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