Haleigh saw the Endocrinologist yesterday. She didn't gain any significant amount of weight. She wants to see her back in 3 months. If there is still not change and her labs come back normal they will increase her dose.
On a brighter note, we got our call from NIH. Haleigh will be admitted as an inpatient the week of April 16th. We will be staying either with her in the hospital or at the Children's Inn if they let her go one night. Her testing will determine if she is in the hospital or at the Inn. She has been assigned 2 nurses that will be caring for her the entire week and she is also with a whole team of doctors. They will all review her medical records from birth. They will then determine what they will test her for. It was hinted a few times while on the phone with the nurse, that she will be getting another MRI. This will be her 3rd which really sucks. By the beginning of March we should have a schedule for her week. Then we will know what to expect while we are there. I will be sure to update when i know more about the testing.
We will be heading back to The Children's Hospital of Philadelphia in a few weeks as well. Between CHOP and NIH i hope they can piece something together.
