Today was overwhelming and I'm really tired & hurting. Looking back, I'm not sure exactly what I expected but the appt with the geneticist certainly was good. She is AWESOME & we definitely loved her & her approach immediately. She was SO thorough, did a lot of physical examination, measuring, etc. I have much more connective tissue disorder involvement than I had realized but we need to do DNA testing to (hopefully) rule out a couple of possible types of heritable connective tissue disorders that are life threatening. We're praying that the insurance will spring for the testing (it requires a pre auth). She's never seen a patient with a CT disorder with the level of respiratory involvement that I have but she's willing to help as much as possible. She (and we) are really looking forward to the neurosurgery appt tomorrow and what the neurosurgeon will have to say.
The weather is bad down here...especially for down here! It's snowing and icing so we're also hoping and praying for safety getting to appts for us and the drs. But, we both have peace that the weather might open possibilities that wouldn't be there otherwise. We'll see how it goes. I'm so grateful to be getting the chance to see these drs and for all the work that MY drs back home have done to talk to these specialists and have them accept my case. Going to try to sleep now...thanks everyone for all the love, energy, prayers and friendship.