It was a BIG week for me. I took my first flight in 5 years to San Antonio, TX to visit the Chromosome 18 Research Center. It’s the only research center in the world dedicated exclusively to researching chromosome 18 abnormalities. My mom was pretty nervous because my last flight didn’t go so well. I really hate how my ears feel when we land and since I can’t talk, I cry. But we decided it was more important to see all the chromosome 18 experts and we decided to go for it. So my mom, dad, and I took off for San Antonio on Monday. The flight was great, until the end. I cried for about an hour because my ears really hurt! But after that I settled down and we headed to our hotel and out for some dinner.
Our first full day in TX was a long one. Our first appointment was at 7:45 am and our last finished up around 3:30pm. We got to have a little bit of fun afterwards though. We went on a boat tour of Riverwalk and then out for a nice dinner right on the river banks.
The second day we only saw one doctor but unfortunately it rained all day. So we couldn’t do any of the fun outdoor stuff that mom had planned. We ended up at the mall instead. Yuck! But we did get to have a nice dinner with friends and they had a mariachi band that played live music at dinner. I loved it!
The last day happened to also be the most exciting for us. In Maryland, you can get a special waiver so that you can get some extra medical services, but, and here’s the catch, only if you have autism. That’s the only disability that qualifies you for the waiver. My mom has thought that I was on the spectrum for quite some time now. But it’s hard to find a doctor who is knowledgeable enough about Pitt Hopkins (my type of 18q-) and that can tell the difference as to what is from Pitt Hopkins and what is from Autism. But we knew there was someone in TX that could do that for us. And she did!!! I got the diagnosis that I was hoping for…AUTISM!! So now my mom gets to begin the process of applying for services for me. It’s a long road ahead but we got the diagnosis. That’s the big part! Mom is heading to NYC for the Positive Exposure Gala and exhibit this week. I can’t go since I just missed a week of school to go to TX. But I’m hoping she takes me back on Saturday for the Family Advocacy Day. Fingers crossed!!! Check of out some of these pictures from our trip to TX!