NIH will never be the same

On Sunday my mom, Jill and I started our trip to Maryland. We left home about 8:00 and got in about 3:00.  The flights went well.  We finally made it to the Children's Inn about7:30. To get on campus at the hospital and inn are there is high security because it is a government hospital. So there are gates all round the campus. When you pull up it looks like you are crossing over into another country. To get in the gates we had to have the van checked, walk though medal detectors, show ID's, and then they gave us special badges. It was easier to through the airport then to get on campus, but we made it! On Monday morning I got checked into the hospital.  Then it was off to a hearing test.  Next we talked to Dr. Porter and Nicole, they are in charge of the study. They discussed my life story. That night Jill and I stayed at the hospital because early Tuesday morning they put me under to give me an MRI, do a skin biopsy, and a spinal tap.   I don't normally do well with anesthetic.  I have been know to get sick. This time I did great and was up and eating by 3:00.  Woot Woot!! So after Dr. Porter and Nicole checked on me we headed back to the Children's Inn for the night.   Yesterday morning didn't start out well. I had 14 seizures right away in the morning before we headed to the hospital. Our first test was the swallow study/speech appointment. I was worn out from my morning and didn't do as well as was hoped so we are going back today to redo the those tests along with seeing a pediatric neurologist.  One of the things that I find neat about these tests are that the person giving the tests shares all the information with you. For example while I was having my swallowing test done I was able to see my "x-ray" on the screen and watch myself swallow. The tech sat there with my moms and explained what they were looking for and why. It was pretty neat.  We finished up about 3 yesterday so we got to enjoy some of the activities at the Inn. They have a therapy dog named Vi that we played with.  I got to the craft center and painted a train and colored. Then we sat in the Family lounge area and watched a movie on the big screen and ate some popcorn.    The staff has been very good to us at both the Inn and the hospital.  Even though I am getting poked and prodded I'm still smiling though it all.  How can I not with my mom and Jill making me laugh all the time.  Though at times, when they are embarrassing me, I think why didn't I bring my dad and Sy.