Thursday, June 26, 2008

Back From LPA National Conference in Detroit!

We are home from the conference and had such a great time!  We met so many great people and families from all around the country (some even out of the country).  It was really such a great feeling being around all these little people and thinking how in 13 years Kaela and a large group of these kids, will be the teens we saw sitting in groups along the wall, dancing at the dances, and AWAY from their parents :)  Everyone was so nice and welcoming to us first timers.  One very exciting bit of news is that we actually met someone there who has Metatropic Dysplasia just like Kaela.  Her mom was there and I heard her mom say her daughter had Metatropic at one of the events and I just about jumped out of my skin! I went to talk to her and we met her daughter Heather. Heather is 18 and graduated at the top of her class and is now on her way to college to be a teacher!  We were thrilled to have met someone with the same thing as Kaela. I never would have expected too since it's so rare (80 some known cases)...but we did! AND they live in OHIO. Ohio is right under us! It's just very exciting.  Heather has gone through 13 surgeries and was very open about sharing her experiences.  All people with Metatropic are different, so we don't know what to expect in terms of Kaela and surgeries. We of course hope that it is far less, or even better, none, but we just won't know for some years hopefully.  One thing we hope Kaela does share in common with Heather is being at the top of her class and having the great attitude that Heather has.
We did meet the docs, but I will post later about that.  I will post some pics too. Unfortunately I don't know that it would be okay to post pictures of other kids here since I don't have permission so I will post some familiar faces :)  Now we can't wait to go to the convention in New York next year!!! Hope to see all of you that we saw this year and many more of you there next year!
Will showing off his dance moves (blue stripped shirt)

10 comments:

Caden's Story said...

Thanks for sharing your experience with us. The convention sounds great ... and we look forward to being able to make NY next year!

Kim said...

The last picture is too precious for words. Just want to give both those sleeping angels big kisses. I am so happy you had such a great time and I am so thrilled to hopefully meet you guys! Although we may have to pry Will and Preston apart since they seem to be two peas in a pod! :-)

How Life Is Measured said...

Great seeing you guys again! See you tomorrow! Don't forget to send me directions.

Catie said...

It was great seeing you guys! I'm so glad we live semi-close. I hope Kaela has a good party tomorrow. Tell her happy birthday from us!!

Tonya said...

I thought the same thing when I heard her say her daughter had Metatropic! I look right over to you, I am so glad you had the chance too meet them and ask questions! Looking forward to seeing you guys on Saturday!!!

John said...

Megan was jumping up and down when she saw the first pic! She loves watching that show and was so happy for Kaela to meet them. It sounds like you had a great time and met lots of wonderful people. Give her big smooches from me and from her cuz Megan who thinks she is the cutest thing ever. Love you all!

Destini said...

Looks like the kids had a great time - and wore themselves out! Maybe Taylor and Will can test out their dance moves together next year!

Katie said...

L-O-V-E the picture of Kaela and Will asleep on the bed...too sweet!!! I can't wait to meet you next year at convention! We will be there for sure. I would love to meet you all before that...maybe we can make a trip up to Michigan?

Charlene said...

Love the pics. They are way too cute! It was so nice seeing you guys again and hanging out at the fireworks. Hope you had fun and maybe we will see each other at the next event.

Mike said...

Howdy, y'all! It was nice to meet you at the conference - too bad we don't live closer to you guys, since our kids are so close in age! Hopefully we'll get to see you guys in NY next year...