This blog is about our life. I also want to raise awareness about achondroplasia and share our experience. Our baby girl Anaïs was born with achondroplasia.
Saturday, August 1, 2009
LPA BBQ
Today we had a BBQ with our local LPA chapter. It was great but let me tell you...IT WAS HOT!!!! We always enjoy getting together with our LPA friends.
Destiny and Anaïs are the same age so it's always fun to see them interact with each other.
It was so hot that I took off Anaïs' clothes and let her be in her diaper.
It was a great afternoon and we are looking forward to our next event!
It's so great that you are so involved with your local chapter. They seem to have a lot of events. Good for you all! Sorry it was so hot, but it looks like the girls had a great time! Anais looks so cute in just her diaper!
On hot days it's a good thing you got the covered area. It helps a little. Last year Melisa Chase who is my sister held one in a covered area but luckly it was not so hot.
I am originally from France and have been living in the US since 1999. My husband Jeff is american and speaks fluent french so we are a bilingual family. We have 2 beautiful daughters Samantha born on 5/27/04 and Anaïs (pronounced Ana-eese) born on 6/6/08. Anaïs was born with achondroplasia, the most common form of dwarfism.
If this is your first time reading our blog, read about how our journey with achondroplasia all started by reading Anaïs' story.
What is achondroplasia?
Achondroplasia is the most common form of short-limb dwarfism. It occurs in approximately 1 in 26,000 to 1 in 40,000 births. The characteristic features of achondroplasia are apparent at birth. These include typical facial features, disproportionate short stature, and rhizomelic (the proximal ends of the limbs) shortening. Diagnosis of achondroplasia is made by physical exam and skeletal x-rays. Most individuals have normal intelligence. Infants and children often have motor delays but cognitive delays are not present. A special infant developmental chart has been made for children with achondroplasia. Final adult height is in the range of 4 feet.
5 comments:
Looks like a fun, but HOT day! We've got our next event on the 16th; a pool party, which will be a nice way to end the summer!
It's so great that you are so involved with your local chapter. They seem to have a lot of events. Good for you all! Sorry it was so hot, but it looks like the girls had a great time! Anais looks so cute in just her diaper!
We had such a great time also looking forward to the next one!!!!
Oh my gosh it looked so hot! I'm so not use to that.....
On hot days it's a good thing you got the covered area. It helps a little. Last year Melisa Chase who is my sister held one in a covered area but luckly it was not so hot.
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