My husband and I talked last night, coming to the conclusion that we need to get Em to the doctor. I called this morning and got an appointment for tomorrow afternoon. Could have seen another doctor today but, with everything we are dealing with, I thought it best to see Dr. Black. He may not be an EDS expert but he at least knows what is going on and can deal with all of the junk that comes up.
I really hope I am wrong, but I am getting more and more concerned that we are dealing with something serious. Like neurological serious. If it is Chiari like I suspect, or even just cervical cranial instability, the solution to either could be surgery. The idea of sending my baby into brain surgery is a bit overwhelming – I can’t quite wrap my head around it. But, the headaches are getting worse and I think we might be seeing the onset of some neurological symptoms. If surgery is truly the answer and can make her feel better, I will accept it gladly. We have to do something… And every day we delay could be causing damage, so it is high time to get the ball rolling.
Will be spending my day searching for and printing info for Dr. Black. I feel very blessed that he has been so helpful to us – I know I can take this info to him and he will listen. He has been a gem so far and we are very lucky!
I know there is an MRI (or several) and a trip to a neurologist in our near future. She is not going to be happy about either but she was fine with the idea of going to see Dr. Black asap. Poor kid, she doesn’t deserve any of this.
She isn’t awake yet – will go check on her shortly and see how she is doing. I devoutly hope she has a better day than she did yesterday.