Monday, August 15, 2011

NFED Conference

June.23 157/365

The National Foundation for Ectodermal Dysplasia Family Conference:

My mom joined me in St. Louis for a few days for the NFED family conference. As most of you know, my boys both have a genetic condition called Hypohidrotic Ectodermal Dysplasia. Although they still haven't been officially diagnosed (still on that waiting list for a geneticist) we are certain that they are affected. The condition primarily affects sweat glands, hair and teeth. Neither of my boys have any teeth or functioning sweat glands that we know of.

The family conference is a pretty spectacular event that has been going on for thirty years. It is a place where all of the kids get together, take out there dentures, and have a good time with kids that look just like them. The parents get to spend two and a half days in classes to learn about the ectodermal dysplasias, and network with other parents about what has worked for them. The people here are a wealth of information. I found a woman that makes custom cooling vests for the kids to stay cool in the hot weather. I spoke with several moms that are in my same position, about to embark on the denture journey, and several other moms that have just been through it and gave great advice on what works. They gave a seminar on how to get dentures covered by insurance. There was a panel with young adults that have ED, where they answered any question about dentures, implants, or anything else related to growing up with ED. I bought a couple of books about ED; one book is Lionel Learns What Matters Most, which is a book about a lion that doesn't have a pretty mane like the rest of the lions, but discovers that what's on the inside matters most; and Carver's New Smile, which is a photo book that chronicles a boy going to the dentist to get fitted for dentures. We have been reading these books since I got home, and the other day Sawyer said "I want to get my new teeth like Carver, wanna go to the dentist." Priceless!!

I feel lucky to have found a network of such amazing individuals. The members that run the NFED work tirelessly to get funding for research and aid, to help those families that are affected. I have called in to the office before with questions about teeth, and the director spend 45 minutes with me answering all of my questions. It would be a much more daunting path for us if it was not for the wealth of information that the foundation, and network of families provides. Because this is such a rare condition, the NFED funds much of the research that is done for the ectodermal dysplasias. Because of this research, there is currently a drug in clinical trials that, if given shortly after birth, will eliminate all of the symptoms of HED. This is an amazing prospect! Here is the link to the NFED, if anyone wants to buy a book or has the means to donate... We were welcomed with open arms, and I know that this is going to be a place of refuge for my boys in the years to come.

This is adorable, three-year old Cooper, with his new pearly whites. He was so kind to let me photograph his new trick so that Sawyer can see how cool Cooper is:)

This is the finale, where all of the kids did a little performance and sang a song. I can't wait until my boys can come and be a part of this clan. Actually, I could have found a few boys to take home with me. There were so many kids that looked like Sawyer and Grayson it was unreal. We were sad that the boys weren't with us, but we didn't have to look far to be reminded of them.

On our way to the airport, we made a stop at the Cathedral Basilica of St. Louis, because I had read some amazing things about it. They were having a mass at the time, so I couldn't really take photos indoors, but what we saw was amazingly beautiful and serene.

June.22 156/365

We ended up having some unexpected free time this morning, so because it is such a historic place in St. Louis, we went on a tour of the Anheuser Busch brewery. It was super fascinating.

There was a talent show this night at the conference, and this little guy didn't need a stage to show us all of his tricks. I don't know if spunk is a characteristic of ED, but watching this guy was like watching my charismatic little Sawyer.

June.21 155/365

We spent our first morning seeing some sights around St. Louis.

The view from the top of the arch.
June.20 154/365

Wednesday, August 3, 2011

July 5th-July 18th

July 18th 153/365

Old pals! A bunch of my Vegas girls have been in and out of Utah for rotations and vacations lately, and so Sawyer has been able to catch up with his guys while I catch up with the girls. This is Holden, Will, Sawyer and Beckham.

July 17th 152/365

There are a few upsides to having no teeth, one of which is these amazing puckered lips. There is more lip to go around without any teeth impeding the way. In case you are wondering, another nifty benefit is picking his nose with his tongue.

July 16th 151/365

That mini van that Megan swore she would never own;)

July 15th 150/365

Play time with dad and sweet potatoes. Does life get any better?

July 14th 149/365

We tried out a Gymboree class with Abby and Eliza. The perfect place for Sawyer...a concussion proof room.

July 13th 148/365

The i-phone. Seriously. My two year old can play "anger birds", navigate to watch videos and photos of himself, find his favorite Beyonce on the i-pod and rock out, call my friends. What will the world be like when he is my age. I already feel like I am living in the Jetson's era.

July 12th 147/365

We met up with some friends, Emily and Jacob at the splash pad. Here are Addie and Sawyer trying to cool down on a hot summer night in Vegas.

Sawyer has been so fascinated by planes and helicopters lately. On this particular night we came to the airport to watch the planes and eat some in-n-out burger, and for the next two weeks he asked to go for a picnic to the airport to eat cheeseburgers.

July 11th 146/365

Blue eyed beauty lovin' on some dad....a daddy that is severely missing his boys at this moment while he is in Columbus Ohio for another rotation:(

July 10th 145/365
Oh the love!

July 9th 144/365

We went to Mt. Charleston for some barbecue and marshmallow roasting, with our friends, Chris and Robyn and their two girls. Abby and Sawyer love to play and terrorize each other. Okay, it is Sawyer doing all the terrorizing and Abby doing all the panicking. But, we had a great time none the less:)

July 8th 143/365

July 7th 142/365

We drove down to Vegas on Nate's birthday to spend the week with him. He was staying the month with Nick and Megan, while doing an orthopedic surgery rotation. We had such a great week spending good quality time with our little fam. And how happy is Sawyer to be with his daddy? He sang the cutest birthday song before he beat Nate to the punch of blowing out the candles.

July 6th 141/365
real baby food

July 5th 140/365