All I can say is, "WOW!" We have learned so much, seen so much, and talked to so many people. The kids are all so similar in so many ways, but at the same time, unique in their own appearance, disabilities, and abilities. This conference is so important for the doctors and the research involving 1p36. It is the most common deletion syndrome out there. There are others of course, but it ranks at the top. I've got a lot of statistics I'll share with all of you later. We've got a few minutes to go eat dinner and then we will be right back at it again.
Talking with the parents has taught Dana and I so much. We've got to set the bar high for Alayna and believe that she can do anything. There is a girl named Callie here that is 19 years old, graduated high school, talks completely in full sentences with detail and thought, and is just the absolute inspiration for all of us. She should be the poster child for 1p36. She walks great and even has a boyfriend!! Alayna will be her own "person" but constant reinforcement and praise is where everyone needs to be on board. Well, I've got to go....I'll post again soon.
This is an opportunity that I'm so glad we took advantage of. There are some great families here.
Oh, one more thing. Thanks to all of you for your comments and well wishes. We ask for traveling mercies for tomorrow for a safe trip home. Love you Lexi, Drake, and Douglas...we miss you too!
SOOOOOOO Long ago!!!!!!
16 years ago
7 comments:
Hi Angie,Alayna and Dana.So glad you're learning so much,good information about Alayna!Hope you've had a good time,but I know you've been busy.Lexi,Drake,and Douglas are being very good!I hope you have a safe trip home.We'ii see you soon.Love Grandpa Denny.
Hi Alayna, Daddy, and Mommy! I miss you so much and can't wait for you guys to get home. I truly believe Alayna is going to be a 1p36 poster child! I can't wait until you come home tomorrow. We all hope you have a safe trip home! I'll see you guys tomorrow. (I can't wait!)
Love big sister Alexis
Are you home yet? I had smurf ice cream today. I went to the doctor today, too, and got a sucker. I played outside and Lexi pushed me on the swing. Grandpa Denny built a fire and I helped him haul the wood. I'm still up and it is 8:40 p.m. and I haven't had a nap. It's time for me to go to bed. See you tomorrow at the airport. I love you!
WE LOVE YOU GUYS. SEE YOU TOMORROW. WE ARE HEADED TO BED. TODAY WORE US OUT! CAN'T WAIT TO SHOW YOU THE PICTURES....WE GOT ONE WITH WHITNEY!
Hi DeKeyrel Family!
Glad to hear the conference went well and you all learned so much. I bet you and Dana are so glad you went. Hope all is well back home. Good luck with all of Alayna's upcoming doctor visits.
Take care,
Meg, Bill, Alayna & Alexa
Hi guys,
You've put together a beautiful blog of your own here! What a great family. Hope all went well getting home from Florida. It was really nice to spend time visiting with you and meeting sweet little Alayna. Sometime we'll have to get together so we can meet the rest of the family!
Nate
Thanks Nate! I was wondering if you got a chance to read it yet. Of course, my twin sister, Annette has already checked yours out and was filling me in! She loves your blog and so do I. Sure wish we didn't live so far away...Sending hugs and kisses to Whitney and Liam.
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