We have been having a great summer so far. NeVaeh even reached a wonderful mile stone that folks with a child of "normal abilities" wouldn't think much about. But our beautiful brown eyed 7 year old has been walking through stores.....YES...I said WALK. She up to this point has been crammed into a shopping cart despite the fact she doesn't hardly fit but now since she has matured and listens (ok sort of) she is well behaved enough to walk through even Walmart!! What an accomplishment!
We got the pleasure this last weekend to go to ST Paul MN to go the 1p36 conference and meet many families and children with this syndrome. We are all family! It is so amazing how close we are to one another. Each child is so similar and so different. That is what is so unique and mysterious about this syndrome that they can't quite figure out why even two children or four children with identical deletions can be completely different children with completely different behaviors and abilities.
We got to meet people that I have been corresponding for quite some time over the internet but this is the first time I saw them in person. It's quite funny how I never knew most of them because they (and I) only post our kids pictures not ours.
They had some very interesting speakers. They even had Dr Hopkins an genetics from Cincinnati, a Speech therapist with a new technique called MNRI thats supposed to show great new improvements with children, amongst other speakers and a dance night and they released balloons in memory of the 1p36 angels who went to heaven before us.
We met many new friends!
We got to meet people that I have been corresponding for quite some time over the internet but this is the first time I saw them in person. It's quite funny how I never knew most of them because they (and I) only post our kids pictures not ours.
They had some very interesting speakers. They even had Dr Hopkins an genetics from Cincinnati, a Speech therapist with a new technique called MNRI thats supposed to show great new improvements with children, amongst other speakers and a dance night and they released balloons in memory of the 1p36 angels who went to heaven before us.
We met many new friends!
The kids got to pet and sit on a horse
The kids even got to try new trikes out!
In Memory of the 1p36 Angels!!
NeVaeh with PJ's and Blanket ready for the movie!!
We had movie night one night. This of our new friends Vicie and Her son Hunter!
A few candid shots of NeVaeh and Daddy!
Daddy and NeVaeh all tired out taking an afternoon nap!!
It was sad to say goodbye to everyone but we still have facebook to talk to most of them and hope to get to see them again someday!! Its an amazing tight support system!!
Thank you for the photos! I so missed going this year, but did go two years in a row and had other 1p36 outings, but I guess I'm just greedy when it comes to hanging with the 1p36 crowd that I'd be lying if I said I wasn't a little jealous, lol...Our kids are so awesome! It looks like a lot of fun was had. Tell NeVaeh that she is an INSPIRATION to Tru for the WalMart trips, we are battling with this issue also....
ReplyDeleteHave a beautiful day & keep the blog rolling....xo