Back from the Conference

What an amazing time we had at the Fragile X conference in St. Louis. Thank you all for your prayers for us. We left early early early last Wednesday and I don't think Momma got more then 2 hours of sleep that night. I have never left my little people for 4 nights and 5 days. I knew it was for the right cause and we had to go, but it's still hard to leave so anxiety got the best of me. We left them in wonderful care with Gran Gran and Papa. I think I let go of everything by noon on Wednesday when we checked into our hotel and our lovely room was pool side. Not that we ever had time to go to the pool, but just to know your pool side was sweet enough for me. The kids did amazing and so did Gran Gran and Papa. They even took a field trip...to Wegmans of course!

We kicked off immediately with sessions upon arrival. Our first was within an hour of check in and this continued each day from 8-5PM thru Saturday. Over the course of the conference, hubby and I went to a total of 35 different sessions on all the various components of Fragile X. Everything from genetics, school immersion, school transitions, special needs school laws, Hyperarousal/OT, Speech therapy, Behavior therapy, Financial planning, Dealing with family, New treatments, Sensory Diets, Testing Guidelines, Sibling Strategies, Visual Strategies, Pharmacology, Music Intervention...to name a few. As we mentioned before, this was a conference of all the top doctors, researchers and therapists who specialize specifically in Fragile X. A rarity, to say the least! We met dozens of families from all over the country. Only one other family, who we already had met was represented from Northern Virginia but we're still scouting!

So after these wonderful, intense, emotional and extremely educational sessions we decided to take advantage of this downtime for some date nights. One night we went to a Cardinals game (oops forgot my camera this night) but we had a blast. It felt like the old days for sure! The next night we went out to dinner and then to visit the infamous St. Louis Arch.

On the last night they had a Gala, hence our attire, which was a great way to end the conference. They announced the next conference in 2010 will take place in Detroit - woo hoo - Motown city. They also had a raffle and silent auction where my sneaky and loving hubby won some jewelry for me and Disneyworld passes for our family. There were a good number of middle and high schoolers with Fragile X at the conference. It was comforting to see them and how they interact with adults. We definitely saw a wide spectrum of kids but it helped us understand our future just a tiny tiny bit more.

Our flight home was great because hubby begged the Delta desk for an earlier flight so we could see the kids before they went to bed. It was so wonderful and overwhelming to be at home. The millions of videos and sessions we had watched and heard over the course of our past few days was actually very real, right in our living room. Little man's mannerisms can sometimes be translated as, oh he's still a baby. But this conference made everything more clear for us and helped us realize that he's not going to grow out of them and we'll see these over the course of his life. So re-entry was a bit of a shock for both of us, but now we're equipped with more information then we ever imagined and hitting the ground running.

OH and hooray - we signed our IEP yesterday morning! Little man starts school Tuesday, September 4th. And NO he's absolutely not riding the bus. His Momma will drive him until he begs and pleads her for it!

Fragile X Awareness Day

Well folks, today is Fragile X Awareness Day. Hubby and I are busy preparing to depart for the Bi-annual Fragile X Conference tomorrow. This year we were not able to do much for the awareness day due to the conference, but no worries, we’re already working on our plan for next year! We’re very excited for the conference and excited to soak in everything we possibly can. Below is an article regarding the conference. We’re anticipating some pretty exciting seminars. Please pray for our travels and family during this week.

High Hopes for New Treatments at Fragile X International Conference
ST. LOUIS, July 21 MO-National-Fragile-XST. LOUIS, July 21 /PRNewswire/ -- Breakthrough research findings describing potentially significant new treatments for fragile X syndrome (FXS) will be presented to nearly 1,000 family members and professionals at the 11th International Fragile X Conference in St. Louis July 23-27. More than 200 speakers will describe the latest treatments for symptoms related to the mutation of the Fragile X gene and powerful new medications being researched.

Multiple early trials are under way of drugs that show great promise for improving the cognitive, anxiety and behavioral problems associated with FXS."Many new treatments target correcting the mechanisms that cause FXS, in contrast to supportive treatments that address various symptoms that dominated past research efforts," wrote Elizabeth Berry-Kravis, M.D., Ph.D., in the National Fragile X Foundation Quarterly (http://www.fragilex.org/html/journals.htm) journal.

Recently featured in Time (http://www.time.com/time/magazine/article/0,9171,1818268,00.html) magazine, Fragile X research is being carried out in all corners of the globe. In the United States, Congress recently appropriated nearly $2 million for continued funding of FXS-related public health activities via the Centers for Disease Control in Atlanta. The National Institutes of Health will fund nearly $25 million in FXS research this year.

The biennial international conference is preceded on July 22 by National Fragile X Awareness Day, proclaimed by Congress in 2000. FXS, the world's leading known cause of inherited intellectual disability (formerly referred to as mental retardation), is also the most common known genetic cause of autism. Scientists are studying FXS as a possible model for better understanding the role that genes play in autism. FXS today affects more than 100,000 Americans. Another one million are carriers of the Fragile X mutation and at risk of passing it on to their children and developing the newly discovered conditions of fragile X-associated tremor/ataxia syndrome (FXTAS), a Parkinson's-like condition causing tremor, balance and memory problems in adults, and fragile X-associated primary ovarian insufficiency (FXPOI), a condition that can result in premature menopause for women as early as their late teens.

For more information, visit the National Fragile X Foundation web site at FragileX.org (http://www.fragilex.org/html/home.shtml).

Hippotherapy Begins

Yesterday we had our second Hippotherapy and Momma remembered her camera this time! OK so what is Hippotherapy. Hippo is the greek word for horse so technically it's Horse Therapy. My logical husband often gets frustrated with this and has repeatedly asked for me to call it Horse therapy. However the legalistic in me continues to call it Hippotherapy.

What is Hippotherapy - it's a therapeutic treatment used with a wide array of patients. In our case it's great for core strengthening, sensory input and eventually it will help speech as well. The way a horse walks gives a repeated input to the child and horses have different gates which offer various types of input to different children's needs. All quite fascinating stuff.

Now your next question - does it work? Well the first week we tried it, I didn't see any significant difference. But yesterday after our second session, little man was the sweetest ever. Very calm, relaxed - overall we had a fabulous day! Was this because of Hippotherapy or just a coincidence - time will tell my friends.

Little man rides for 30 minutes with an assistant on each side a guide in front of the horse and our PT giving instructions. He rides forward a few rounds, backwards and side ways. Then he does some stop, stand and sit exercises. We're on the wait list for September so hopefully this will be part of our regular routine soon!

Here's a picture of our cutie pie riding backwards...more to come on our progress with Hippotherapy!

TIME highlights Fragile X

Fragile X is rarely in the news and almost never in a large publication like Time Magazine. Today is a huge day for the awareness and research world of Fragile X to be featured in a national publication. Read and pass along to your friends and family to help us spread the awareness.

http://www.time.com/time/magazine/article/0,9171,1818268,00.html