Jul 6, 2008

National Prader-Willi Conference

Justin and I were able to fly up to Milwaukee with Sarah and Spence to attend this year's National Prader-Willi Conference. It really reaches world wide--with people from Israel and Australia there too. We came home feeling really good about the things we do for Sarah, but also very overwhelmed with all we should be doing. It's just nice to be fed copious information and ideas; we're armed and ready to roll forward again!

I'm glad we were able to take Sarah and Spence with us this year. We both feel like Sarah is old enough to start understanding things about herself and love watching her associate with others that understand her. As Spence gets older, we're excited to let him rub shoulders with other kids that have siblings like Sarah too. He'll definately benefit from some of these things in his future too.

There were 17 new scientific studies concluded this year that we learned about (I won't bore you with all the terms and statistics). We attended multiple classes on IEP meetings, dealing with skin picking, behavior management, recent information on scoliosis, doctor panels, etc. We love rubbing shoulders with Sarah's doctors in a informal setting. It's pretty unique to be sleeping in the same hotel as her doctors, and talking over dinner with Sarah right there. Her doctors definately know her and our family personally!
This is "Silly Lilly" and "Wild Will" that appear at every conference for the kids. They often sing "My Names not Willi" with all our children. Spence and Sarah loved dancing with these guys at the banquet.
Here's a picture of the kids and instructors that were in Sarah and Spencer's class. From 8:00 until 5:00 our kids were taken care of by Prader-Willi experts. They couldn't have been better cared for. We loved being able to just focus on learning and then pick our kids up at the end of the day to have dinner and spend the evenings together. They even gave each child their very own sleeping bags, which enticed them to take naps! (the cows would be the ones representing Wisconsin)
Me and Sarh listening to the music and watching the dancing at the banquet. I'd do anything for this girl!
The grand ballroom--some of the Prader-Willi kids dancing.

After the conference was over, Dan, Justin's pilot buddy came and picked us up to spend the Fourth of July together. We became friends back in Utah when we were going to school. They have three children, and I have to hand it to Jen because she was due this weekend with her fourth and still went to watch fire works with us on the beach of Lake Michigan.
And they were amazing! I'd never seen fireworks like that and I've seen some amazing displays (over the arch in St. Louis, Missouri and Park City, Utah). I guess Milwaukee is known for their incredible fireworks and I can see why. Thanks Dan and Jen! We loved the fireworks, sleeping in the basement, and your yummy waffles in the morning!

One of the highlights of our trip was flying in the jets that Justin flies. Sarah and Spence got a look at "Daddy's office" and even got to push a button. We also got to take a look at the crew room that was Justin's home away from home for quite some time. It's probably a good thing that I hadn't seen it until now. I love you Justin--so glad we had this trip together!

7 comments:

Crystal said...

Sarah is so lucky to have parents that care so much about her. That is so great that you guys dive into knowing as much information as possible. You are doing so much for her. You are a really good mom Looks like a fun trip!

Brintons said...

Hey, we watched the fireworks just on the other side of Lake Michigan in Chicago. How fun to have you so close :)! Sounds like a wonderfully helpful conference. What an amazing family! How fun that you got to fly in the jet Justin's flies and see his "office". Love the pictures.

Tasha said...

It is fun to see your blog and get caught up on all that you have been doing! You were only about 5 hours from us! I hope that you enjoyed the midwest!

Ben Kroff said...
This comment has been removed by the author.
Ben Kroff said...

Love you guys. Keep up the great work. I am glad to see that there are resources like the national conference for you. I am sure that is comforting to rub shoulders with the docs and other families who know and understand your circumstances. Tony Wittwer said the Amy went out to visit you, oh, I just saw the pictures. cool. One of these days we will prove our love and come out to see you too.
Love ya, see you sometime soon I hope.

Aaron and Tami said...

Hi guys,

We had fun getting caught up on your blog. I have to admit it's been a while since I've "blogged". Life is so great and so busy! :)

You're pictures and things you're doing look so fun! I'm jealous of the blueberries. I just started growing my own berry bush, but I don't think it's going to stand the heat! How fun for you!

We hope we get to see you soon!

Lots of Love,
Tami

Chelsi said...

What an incredible experience! Sarah is so blessed to have you as her parents! I know that you probably feel more like it's the other way around, but you're all blessed to have each other.