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!

Easter 2012

We really had a great Easter this year.  Our good friends, the Grove's who we don't get to see nearly enough, came over for dinner.  It used to be our tradition to spend Easter together with a few other good friends who have since left us.  We miss you Rehmeier's and Nason's!  It was so nice to get to hang out with them again.  The weather was beautiful too.  The kids played outside all day and the adults got to chat and watch some golf.  Charlie had a pretty rough day and reminded me exactly what it was like before medicine, but other then that it was perfect.  We had a great egg hunt that the neighbors joined us for that I think all the kids enjoyed.  It was a great day!  Happy Easter!!

My New Life With Charlie

I know I have already written about this, but I just have to brag a little more about this cute little man.  Life for me has become so much easier.  He is so much better now that he is on medicine.  Right before we started medicine I had taken him to the mall to get a couple things.  It was just him and me.  He threw the BIGGEST fit I had ever seen him throw.  I actually sat on a bench and watched him kick and scream with absolutely no idea what to do.  When I tried to pick him up he smacked me so hard across the face.  People were stopping and staring at me.  Judge all you want people, there was NOTHING I could do.  I always wonder, do they think this is what I WANT my 4 year old to be doing in the middle of the mall?  Do they really think that I think this is ok?  I was at a complete loss.  I just sat and waited until he was done and walked out.

 

So this week I finally got up the nerve to try it again.  I couldn't just avoid the mall forever, right?  Well, IT WAS AMAZING!  He was an angel!  It was so great I went back the next day to exchange something for a different size!  My life has forever changed!  What a blessing!  

One more quick story and then I promise to not talk about it again for awhile.  Our 8 year old neighbor came up to me and said, "This is kind of weird.  I just asked Charlie to give the toy back to me and he just handed it to me."  Even she noticed! :)

Weekend In Kansas City

We spent the weekend in Kansas City to see our niece Lydia perform in her cheer competition.  It was so fun to watch.   Both boys were awesome and enjoyed every minute of it.  When Lydia was done performing the first time, Tyson went up and hugged her and said, "I am so proud of you!  That was awesome!"  It was so sweet.  Usually Noah, her brother, is the King of the World when they are around but this weekend the boys were fighting over who got to sit by Lydia.  Now, of course, Tyson wants to be a cheerleader and was just dying to try on her uniform.  But being the mean mom I am I didn't let him.  We did however spend some down time trying out some pyramids.  Tyson was in heaven.  Last night before he went to bed he said so sweetly, "Mom, that was a fun dance party!  Lydia was so good!"  It was pretty precious.  And I have to also give Charlie some props because we spent most of the weekend sitting in chairs watching people we didn't know do some cheerleading and he was awesome!  Life might just being getting a little easier with these two. (I'm scared to even say that!)
And here are a ton of pictures taken with my phone because again, I forgot my camera! :(