First I have to say a great big THANK YOU to my sister in law Laura for putting up with me and helping me to be not so confused and to find my way. Also, Thank you for helping me step outside of my box...I love you!!!!
I also want to thank everyone who helped get us over there. I couldn't have done it without you and when you read on you will see just how important this trip really was so....
THANK YOU SO MUCH FROM THE BOTTOM OF MY HEART!!!!!!!
We flew in so late on Sunday and our cab ride from the airport was almost $100.00....HOLY CRUD!!! We almost passed out..... We got to the hotel only to find out that no one over there believes in French Vanilla Coffee Creamer....hmmmm right there we should have turned and run but we didn't. We stuck it out.....
The first day was a killer. I had to check in with admissions at 7 and off to testing after.
Clinic....done by 5pm...YUK!!!!
Hearing and balance....woo hoo kind of fun....7 hours
Day three....ENT... Eye doc and then my eyes were dialated...double YUK!!! 7hours
Day four....Time to go home but not before nurses clinic... and I got to see my New Neuroseurgeon Dr. Ashtegari...
What we found:
A new cyst in my sinuses small but we will monitor.
A new tumor in my left auditory canal small and we will monitor
Two new tumors in my spine, again small and monitoring.
They accepted me into this clinical study. What this means for me is that they are taking on all of my medical bills. testing, surgeries and travel expenses for this. They are the best of the best when it comes to my disorder and I am in good hands.
A new worry. I found out that I am a spontaneous case. I developed this in my mommys tummy when the cells split about the 4th time which means that my children have either a 1 in 2 chance of getting this or a 1 in 4 chance. Scary but at least I have done my research and I know who to call and where to go. I can monitor them and watch for the signs. They will be accepted into the NIH on the same deal as me if they have this too. That made me feel better.
All in all this was a good informative trip. I feel good about going and I know that this is the right place for me to be with my disorder. They really know their stuff.
Thanks again to everyong for all of your nice thoughts and prayers and all of your help with the fundraiser. I really appreciate it. YOU ALL ROCK!!!!!
May 22, 2009
7 years ago