Fragile X Article

Special Report Link

Here is a link to a really good article about the advances in medicine in the Fragile X world.  Dr. Berry-Kravis at Rush in Chicago was the speaker at the conference we went to a month ago.  The Novartis study in Chicago is the one that Tyson is going to be part of (if he cooperates :)).  We are very optimistic that we are getting so close.  Berry-Kravis says in this article 2014 at the earliest.  That is seriously just around the corner!

And just because you can't have a post without a cute picture!!

Field Day 2012

Field Day is always so much fun!  I love watching Tyson try new things that I always think there is no way he is going to do.  The sack race always amazes me.  He steps in that itchy, scratchy bag and jumps.  For anyone who knows our family you know jumping was one of the hardest things for my boys to learn.  Then the three-legged race you are tied to another person AND have to hold hands.  But every year he amazes me and participates and enjoys all of the events.  He even did tug-of-war this year!

A little brotherly love caught on film.

Look at that intensity!

Charlie enjoying the day too!

Charlie's turn to race.  He is READY! He stood like this while all the kids lined up.

Tug-of-War

Tyson and his best friend Cadence!

(It was also crazy hair day, she doesn't usually color her hair :))

  

And now a few videos!

Last Day of School

Today was Tyson's last day of school so I thought it would be fun to look at the last 3 years of pictures with his teachers.  I always take one of him with his teacher on the last day. 

Kindergarten - Miss Horan

1st Grade - Mr. Spare

2nd Grade - Mrs. Gray

Just can't believe he is going into 3rd Grade!!

Don't Get Used To This!

Three blogs in one week, I must be sick or something right?  Well, there has been a lot going on around here and this is really the only place I EVER write things down.  This is really like my online journal to remember these precious moments. 

Last week my mom and my aunt Tammy came down to visit.  I have not seen my aunt in probably 20 years, obviously WAY too long.  It was a great visit and I hope they come back soon.  While they were here my mom decided that she needed to ride a bike with the boys!  Oh my!  I wonder how long it has been since she rode a bike!  I thought she was out of her mind but she was determined.  And I actually pulled out my video camera so we can all enjoy this memory together forever! :)  Enjoy!

And Now It's All About Baseball!

My kids are very much into whatever sport is in season.  They go all in to whatever season it is and now we have moved on to baseball.  Tyson had his first practice on Saturday morning and we have been doing a lot of practicing in the backyard.  Charlie has now become obsessed with it and wants to watch The Sandlot ALL the time.  He loves it and acts out many parts of it, which is just so cute.  Here are a series of pictures of his face while he is swinging the bat in the backyard...

And my all time favorite...

He also loves to wear the entire catcher's gear.  He can hardly walk in the chin guards but that doesn't stop him.  We were playing in the backyard with the neighbors this weekend and he would walk out to the pitcher and hand her the ball.  He would look at her and say, "now let's play ball!"  Seriously if I could freeze time I would freeze both boys right now!  These have been my favorite ages for both of them.





And then this is how we found him!

Man, I love that kid!

Tyson Can Ride A Bike

Last Sunday Tyson decided he wanted to ride his bike without training wheels.  Last summer when we would try to get him to try he would scream and yell and not even sit on it.  This time he said, "Let me do it!" over and over.  So we did and man he learned fast.  He was sooo proud of himself and kept telling us that we needed to video him.  He would yell, "Charlie, watch me!"  The entire neighborhood knew that Tyson had learned because he would stop them as they drove by to show them.  We even had to go knock on some other friend's door so they could come out and cheer for him.  Now all he wants to do when he gets home from school is ride his bike.  I think the independence of it is exhilerating to him.  Here is a video of him as he was learning. 

As he rides by he says, "this is an awesome day!"  How cute is that?

This Is An Awesome Day!

Oh, and please ignore the shoeless 4 year old eating Wheat Thins in the middle of the street!

Update on Boys Diagnosis

It has been one wild ride lately in our house with the boys.  It all started almost 2 years ago when we were asked to be part of a research group for autism after both boys were diagnosed.  I thought why not, I am willing to help in any way we can.  So they came to our house and did blood work as part of the research.  They told us if we didn't hear anything back in 6 months that everything was "ok".  Fast forward 18 months.  I am doing my usual afternoon drive from school to school to get the boys and my phone rings.  I pick it up and it is them telling me that our test results from our bloodwork showed that the boys had Fragile X Syndrome and that I was a carrier.  Wow!  OK, now what?  So the next few days I researched online like a crazy fool barely taking time to shower, called all our family, called every one of our local doctors, and then called KU Med where we have been going since Tyson's original diagnosis.  We have found that in Manhattan we are about the only ones with this diagnosis so none of them really know much about it.  We are now in contact with KU Med and are hopefully getting into a brand new clinic starting for kids with Fragile X Syndrome.  It will be opening in the next few months.  The research shows that this is the one known genetic cause for autism.  So one positive in all of this is that we are one of the few who know the cause of our boys' autism.

So here I am a few months into this new diagnosis trying to figure it all out.  Our goal is to raise awareness about Fragile X and are hopeful that with awareness and research there can be some huge advances for our boys.  There is a lot of really good information out there and it looks like some medicine trials are getting closer to finding a pill that would maybe help.  The best website I have found is www.fragilex.org.  And on Facebook I found Kansas Fragile X Links Group that has had a lot of links to good research articles too.   

And here are a couple really promising research articles.

http://www.autismsupportnetwork.com/news/could-autism-be-reversed-pill-3789343


http://www.boston.com/business/healthcare/articles/2010/08/23/cambridges_seaside_has_new_approach_to_fragile_x/?page=1

We are trying to come up with new ideas to raise money for Fragile X research this year instead so I will keep you posted!