Update! 7/23/13

I cant believe I forgot to update after coming home from OMAHA!!! Whew it has been busy since we got back!

So here it goes!

Omaha was just short of perfect and amazing! Thank you first to every single one of you that helped us get there! I am so glad that we had the opportunity and support getting there. It was truly a once in a lifetime experience to see all these kids in person that suffer from what our squishy does. To get to talk to the parents that you have befriended online in person.

There were 7 families in attendance which is amazing! the first day was our conference. They had speakers from the Boston Children s Hospital where most of us belong to their genetic study. There was another doctor from another hospital that wants to elaborate on the study, the Center for rare diseases. It is both sad and amazing to me the lack of study or work being done to not only cure, but to build a better treatment for our children. The CRD said they calculate Ohtahara Syndrome as a 1 in a million possibility! So to have 7 families in attendance was definitely a miracle!!

While there we met a family with a daughter who is a year older than Aiden, and both families were just blown away at the similarities between their daughter Keeley and Aiden. Their daughter tested positive for a specific gene that caused her Ohtahara Syndrome... so this gives us something to work towards looking into with Aiden. It does not give us a cure but we are hoping that it will possibly help in treatment? and since it is a gene that is being looked at by the medical field it is that much closer in Aiden's lifetime to obtaining a better treatment for him.

Aiden was a naughty naughty boy while there we had one of the worst seizure days we have had in a very long time. The nicest part is that it was totally a "normal" for all the people there, they understand without a word being said..That was something I heard over and over the whole weekend, it almost made it feel like everything was normal, talking about seizures, feeding, wheelchairs ..

We got to go to the Omaha Zoo as a group and while there me Mike and Aiden went and saw where they have the collage softball world series. It was just amazing that's the only way I can describe it ! I hope that this becomes something we get to do again and meet more families.

Thank you again everyone for all the help!