Great News!

We have had a lot happen in the last couple of weeks.

I called the Endocrinologist and they said they had an appointment for Shae-Lyn for July 4th but they were going to try to get her in early and then on Thursday the 13th they called and said they had a cancellation for April 18th so we took it!  It moved everything up by about 2 1/2 months because we had to see the endocrinologist before we saw the geneticist.

We went on Monday, and the Endocronologist was great with Shae and talked with her and to her the whole time. After checking her over she really felt that there wasn't an endocrine issue with Shae-Lyn which means she only has the PFD and doesn't have the McCune Albright's Disease - It was a huge win today.  And then, they called the x-ray department to get the skeletal survey results because we hadn't been able to get them yet and the x-rays show no other spots on her body - so it looks like she only has PFD in her skull and nowhere else - another huge win.  The endocronologist sent us away with some urine and blood tests she wants done just to be extra sure but said we can do them whenever the next doctor requests tests to be done so she doesn't have to be poked twice.  She also said she would go down and tell the genetics department that she had seen her so they can book her appointment.

On wednesday the 20th, we got her Geneticist appointment for June 3rd.  She will have to have urine and blood tests done with them - so we will do them all then (Shae cried when we told her - felt really bed, no child should have to have that be a part of their life), but she will not be alone.  Apparently, Darcy and I both also have to have tests done so they can do a comparison.  We also have all of her other specialist appointments booked.  She has her hearing test May 31st, her neuro-opthamologist appointment on June 20th, and we see her ENT - the original specialist July 11th where we will have all tests and opinions of the specialists in place and can colaborate with the ENT to determine the best course of action for following Shae with this disease and take any actions that are necessary for her health.

We feel that the news we have received this week is as positive as we could get aside from her never having been diagnosed with PFD in the first place.

Thank you everyone for your messages, Shae-Lyn has read everyone and I know it means a lot to her.