Happy Birthday

Little late on this post - but Hayden turned 4 years old on March 18th. Wow - 4 years old - the time is just flying.

We went to Pump It Up for his birthday party the weekend before.































Unfortunately he got sick on his actual birthday and has been fighting a cold ever since.

Fragile X Advocacy Day 2009

Fragile X Advocacy day on Capitol Hill was one of the most amazing experiences of my life! We had a day of training on the 3rd and then spent all day on the 4th meeting with our state representatives to advocate our agenda. Over 130 people from 35 states attended - the biggest advocacy day yet.

What was even more amazing was he support we received from freshman Representative Harper (R-Miss.). Representative Harper is the first person in Congress to have a child with Fragile X Syndrome. He is a remarkable advocate on Capitol Hill for our cause. Knowing we were all coming, he arranged to give us a private tour on the House Floor. This is the same place the President address joint sessions of congress and gives the State of the Union Address. All 130 of us gathered on the House Floor while Rep. Harper and Senator Delahunt (another champion of FX) spoke to us. After that we got a tour of some of the other rooms in the Capitol. It was an amazing experience.

After the tour we went on to our meetings with our Senators & Representatives. The Chair of Public Policy for the NFXF is from Michigan and it was great going to the meetings with him and learning. I always was disappointed I never got into politics, but now I've found my way - and what better cause could it be for.

What was also amazing was all the great people in the Fragile X community I met. We went out in groups for dinner Tuesday night and it was great being able to talk to people in other states. I was even able to speak with some of the leaders of the NFXF. I learned so much, not just about politics and the process, but also so much more about Fragile X and what is being done.

It was truely an amazing experience - and one I will be doing every year for the rest of my life.

I put a link to Congressman Harper's website that his Public Service Announcement, speech on the House Floor, and other information on the things he's doing for Fragile X.

I encourage anyone who can do it to attend an advocacy day - it is so empowering and life changing. Here is a quote that really means alot more to me now:

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. ~ Margaret Mead

God Bless.

Surfs Up Dude

Seems as if the days & days of playing Chuzzle with Mommy and Daddy have paid off. Hayden is becoming pretty good on the computer. He plays Chuzzle by himself and can surf Playhouse Disney looking for Little Einstein games. I think maybe he could give Papou some tips now !

Now I Know My ABC's

Can't believe it's been so long since I updated. The time is just flying by...can't believe it's nearly the end of February.

We've had some amazing progress over the last few weeks. Hayden is saying (and trying to say) so many new words. It's funny...his speech therapist must touch his chin when she's trying to get him to say a sound...so sometimes when he talks he grabs his chin. Same thing happened when we first tried to teach him to nod his head yes....we would grab his head to show him the motion, so when he started on his own he would grab his head.

But the biggest new thing is he knows his ABC's !! He can't say them - but he can point to each one of them. He has a Little Einstein toy laptop and one of the games is matching the uppercase letter to the lowercase letter. So the game will show lower case "n" and say "find uppercase N" - and he is pretty much right everytime. We have the magnetic letters on the fridge - we say point to "H" and darn near everytime he points to the right one. He's been fascinated with letters lately - he points to them on shirts, in books, everywhere. It's really amazing and an awesome achievement.

This is a picture of Hayden and his "girlfriend" at school Emma. They've become good friends and on Valentine's day we took them to Chuck-E-Cheese. How romantic. His favorite game is Skeeball.

I'll probably have some more updates early next month. It's Fragile X Advocacy Day in Washington D.C. on March 3rd/4th and I'll be traveling to D.C. to participate in my first one. I very excited and looking forward to the experience.

God Bless !

FXAM Board of Directors

Been a busy day of posting to my blog.

I've just been notified that I have been chosen to sit on the Board of Directors of the Fragile X Association of Michigan as the Recording Secretary.

This is such a great honor. I'm very excited to be part of this group and look forward to doing whatever I can to help the organization and to make the 2010 International Conference a success.

P.S. This means hitting up alot of people for help and donations......so you have been forewarned !!!!

God Bless

Say Dada !

We have had such amazing progress in speech the past few weeks. Hayden just continues to try and talk and say so many words. Dada, Moma, Bebe (for Baylee our dog), yes, please, up, and so many other words he is trying to say. It's been truely amazing and wonderful to hear. We sit in the living room sometimes and just listen to him rattle things off - it's great.

Great strides in his physical strength too - walking up steps without holding onto anything. Seems like small stuff, but is a great accomplishment.

Alot of progress over the last few weeks - it's really great.

God Bless

Read My Lips And Puff Me Bud

You are probably thinking - what the heck does that mean. Well - on New Years Day my family lost a great man....my Uncle Nick. He was a big guy with a big bark - but was a teddy bear at heart. I have so many great memories of my uncle. The times we shared going to Rocky movies, overnight trips to casino's in Mid Michigan, how he loved the NFL Draft and I would call him every draft day to see how the Lions did, and his famous saying "Read My Lips And Puff Me Bud".

Love you and Miss you Unc...God Speed.