Chicago-The Wordy Version

In April, Joel and I went to an amazing conference in Kansas City to learn all about Fragile X Syndrome.  We had no idea what to expect since this was all very new to us.  I can't speak for Joel as much, but I was deep down thinking that we would be sitting through a big reality check.  I was expecting the worst I guess.  We pulled into the parking lot and literally there were about 10 cars.  We were shocked to find such a small amount of people especially at a conference in Kansas City!  It really made us realize that the number of kids diagnosed with Fragile X Syndrome is so small.  Well, the conference was NOTHING like a pity party, it was the exact opposite.  The speakers were all amazing and we learned so much.  Most importantly we learned that the research in the field is booming.  There are many drug trials going on as we speak and they are so close to finding a medicine that might change the lives of people with Fragile X.  It was so encouraging!  After hearing Dr. Berry-Kravis speak about all the research (which a lot was way over our heads) we decided that Tyson might be the perfect canidate to get into one of these trials.  We feel strongly that if our little man can do this, he would be changing the lives of so many.  What an amazing thing right?  So that leads me to Chicago!

We signed Tyson up for a clinical trial that was being done in Chicago.  Joel and I both thought that Tyson would be able to do it and we knew that most kids with Fragile X Syndrome would not be able to.  So Tyson would do it for all the kids who can't (still gives me goosebumps). We also knew that would mean we would spend a lot of time this summer there, but we were willing to try.  It really is a great place to be "stuck" for a few weeks.  We knew it was not going to be easy for him, but we were prepared to make him feel like a superhero, Spiderman to be exact.  And that he did.  He referred to himself as Spiderman the whole time we were there.  He sat there like a champ while they drew blood, put IV's in, ran tests, and asked him and us a ton of questions.  He really was a superhero!

So here is how it went.  Our first visit was kind of the pre-screening for the second visit.  He had to get some blood drawn and a few tests to see what everything was before he took any of the medicine.  One day he took the medicine and an IV was put in so that they could draw blood multiple times without having to be poked multiple times.  This was to determine how much of the medicine he would recieve in the second part of the study.  He had no problems with the medicine or the blood draws.  He really was awesome!  The hardest part for him was keeping his hand straight.  Then the last day was one more blood draw and a couple other quick tests and we were on our way.

The second visit he actually took the medicine for 7 days.  He had a couple predose blood draws and a couple tests like the first time, but once he started the medicine we were really on our own until the last couple days.  The second to the last day was another all day blood draw day so he had to get the IV again.  It didn't go as well this time, only because they couldn't find the veins as well so we ended up in the arm which was a little more difficult to keep his arm straight.  But he was still awesome!  The last day was one more quick blood draw, a couple tests and we were on our way.  He seriously could not have been a better patient! 

If you are still reading you are an awesome person!

They had told us not to expect any changes in them while they were on the medicine because 7 days is really not long enough to be on it to make a difference.  Well, it made changes.  He was so calm and relaxed.  His speech was slow (in a good way) and clear.  Here are a few quick stories.  I wanted to go downstairs and get a pop one morning.  I said, "Tyson let's go get a pop."  He said, "Mom, I can't go downstairs in my pajamas.  That's silly!"  Me, "well you're right Tyson, here are some clothes."  Tyson, "Thanks Mom, I appreciate that!"  Seriously about fell on the floor.  One night while eating dinner at the Rainforest Cafe (talk about sensory overload!) he spilled his Sprite on his brand new Bulls jersey.  My kids ALWAYS freak out when they spill.  I was ready to pack up and leave because I knew what was coming.  Instead, he reached over the table, got a napkin, wiped it off, and said "that's better!"  And went on with his dinner.  Holy ****!!

So kind of bittersweet.  Now I know this medicine is out there and can't get it until it gets to the next stage of research.  I was told at the latest it would be the end of 2013.  I have to keep it in perspective though, I just found out the boys have Fragile X Syndrome in March, it's only September...

I promise in the next post I will put lots of pictures of all the fun stuff we did while we were there.     Thank you for reading! :)