CHARGE Syndrome Conference

 We went to the CHARGE syndrome Conference in Scottsdale, AZ last week. It was seriously one of the best weeks of my life!!!! It was full of fun, information, emotions, excitement, and friendships!

Our whole family went, and my mom came along as well to help us. We flew there and that is no easy task since we literally have to bring a hospital room with us. We had so many bags it was embarrassing!!! They are playing on the escalator because we had a delay.

Drake was very excited to fly on an airplane and he did great. Laynie was a little bit of a "beast" but eventually fell asleep (during the landing).

 We stayed at the Fairmont Princess and it was AMAZING!!! It was definitely the nicest resort I have ever stayed at. It had lots of pools, restaurants, shops, and a huge conference center. We got there a few days early, so we just hung out at the pool the whole time. It was pretty hot, so that was about all we wanted to do.

 It is always tricky swimming with Laynie, since she has a trach. It cannot get in the water (even for a second) or the water goes straight to her lungs. The pool was PERFECT for her because it was a gradual, beach-like entry and she could sit in the really shallow water.

 They also had 2 awesome water slides. I think Drake went down them at least 100 times. We all enjoyed the slides:)

 The resort was also on the TPC stadium golf course, where they play the Waste Management Open. Trevor thought it was pretty cool, and it was beautiful!!!

 

My mom's good friend met us a few nights to visit. She picked us up from the airport and even let us borrow a car. It was SOOOO incredibly nice!!!

 The conference had over 900 people there. I was shocked to hear we had such a large group. There were sooooooo many wonderful families, and a lot of professionals that made it a HUGE success. Words cannot express how comfortable we felt being around so many other families that walk in our shoes daily. They understand the suctioning, signing, surgeries, sleepless night, worries, weird stares, ect.. It is so nice to be around these people who look at your child and smile and "get it".

 We are also very grateful my mom was able to come. She helped us so much with the kids so we could go to some conference sessions.

 Trevor also had such a good time. He isn't on facebook so he wasn't connected with the families first, so he was a little more hesitant than I was about going. He LOVED watching the kids walk around and he had a big smile on his face the whole time!!!!

 Both of my kids love my mom!!! We were very glad she was there, because Laynie was very hard to deal with sometimes. We joke about it and call this her "beast mode". She was in "beast mode" at least 50% of the time. She was over-stimulated with so much going on and so many people around. My mom even said that she never wants to miss a conference because she had a great time also:)

 Drake was really enjoying his relaxing time:)

 So the BEST part of the conference was meeting other families. I had a perma-smile on my face because all the kids just made me so happy!!! We have a facebook group so I felt like I already knew some of them, but it was so wonderful to actually be able to meet them in person!!!

Here is Laynie hanging out with Kennedy and Kalob...

 Laynie and Isla... I have always thought Isla reminded me a tiny bit of Laynie.

 Laynie and Andi Bean... Andi can talk so well and she eats like a champ (without a tube).

 Laynie and Hannah... They had fun splashing in the pool together!!!

 Laynie and Reuben. This little kid is so cool:)

Laynie and Kennedy. These two both have trachs and are soooooo cute together.

Laynie and Arianne...
There were also a lot of others that we loved spending time with, but didn't get pictures with!!!

 Here is a big group of some of the babies and toddlers. It is so neat to see them all together!!!

 Kids and their dads...

 More cute girls...

 

 
 
 
 

One of the best parts about the conference for me was meeting the other moms. We had a mom's night out and just chatted. I felt like we were all good friends, yet we just met. We have such a strong bond because of our heroic children!!! Now that we are home, I feel sad that I have to wait 2 more years to see some of my friends. The next conference will be in 2015 in Chicago. I can't imagine ever missing a conference!!!!

They had fun stuff planned at night also. One night they had CHARGE idol and I fought tears the whole time as I watched CHARGERs sing, play piano, show their karate skills, model, ect...

I think I was on the verge of tears the whole time I was there. Mostly happy tears, but also sad tears here and there. It was really hard for me to see some of the older CHARGERs. I picture Laynie normal when she gets older. Sometimes I think she will out grow all of her problems and be fine. Don't get me wrong these older CHARGE kids are adorable and doing great things, but it is hard to see as a parent what the future might hold. I was surprised by the number of older kids that couldn't talk. Most could sign very well though, and it was a rude awaking for Trevor and I that we really need to work on signing more with Laynie!!!

I was also shocked by how many of the sessions were on behavior problems. How could my sweet Laynie have behavior problems??? It was also one of the things that was a little hard for me and scares me in the future.

The other night there was a carnival. Drake got his face painted like a zombie and LOVED it. He has been showing everyone his picture!!!

 

Some of my favorite things about the conference......

• Having strangers come up and sign to Laynie
• Watching another mom catch her kid's snot out of their trach with her hands.... let's be real, trachs are slimy!!!!
• Seeing feeding tubes in belly's of about 90% of the kids in the pool
• Hanging out with moms that I just met, but it feels like we are great friends
• Seeing teenage CHARGErs sign to one another
• Watching Laynie run around the conference center like she owns the place
• Having people say, "Look, there's Laynie!!!" and we don't even know them.
• Feeling so comfortable and happy:)

We don't live very close to any other families with CHARGE so it was extremely nice to be able to connect!!! We will see you all again in 2015 in CHICAGO!!!!