I can sign

My smart toddler!

Ducks, ducks and more ducks

Something to brighten your day!

Trouble trouble trouble.....

CHARGE Conference 2013

First, I wanted to start out with a picture of the kiddos. These are kids that I have followed on FaceBook for months and months now. The ones that couldn't make it this year were there in spirit and hopefully we will meet them in CHICAGO in 2015.




Kennedy's first airplane ride and she did awesomely!
















I think if I wrote about everything we did and saw on this trip I would be typing until next week. :-) I will say it was worth all the stress of traveling with Keni, the phone calls to supply companies, and worry about forgetting something. I got to meet so many great people and hear such great stories of inspiration. It was so nice to be around people who "get it". To be able to whip out your syringes and Mickey attachments to feed your daughter and not get stares or whispers. Everyone was so great! Not just to Kennedy, but to us as a family! This trip brought out every emotion from the good to the bad ones. It showed me and Jeremy both sides of the spectrum when it comes to CHARGE syndrome and the possibilities that are there for Kennedy and her future. We will always try to make it to every conference from here on out. I hope next time we get to bring even more of our family members because it is a wonderful experience for everyone. I want to thank both our moms for coming and helping us with the trip from traveling to taking care of Kennedy in camp. We COULDN'T have made it without those extra hands.




Kennedy and her friend Laynie! The kids played at one of the many pools in our down time.




I had lots of chats with this lovely mom Calyn.




Fun at the local gameroom!








Miss Andi bean and Kennedy!
Joselain also performed in the Idol competion and she did wonderfully! I will post a video in another blog post later.




















Joselain received an award for her awesome idol performance.




Kennedy was trying to see! LOL
SEDONA FUN!








We did a jeep tour and Kennedy loved it! Momma on the other hand was scared for kennedy! LOL great memories!




This is our family!








Sadly, this is the only picture we got with a cactus. How did that happen !?!? we went to state of cacti and I have no more pictures of them. It was on my list of things to do but for some reason it didn't happen.




Kennedy loved all the attention!




These are the wonderful women who I talked to almost everyday on FB. I really don't know what I would do without them. They are there for me with any questions that I have. I love the support they give to me and all the other moms on a daily basis.












Our little buddy Kaleb!










We went to Old Scottsdale for a day. It may be dry in AZ (I think the humidity followed me) but it is still HOT HOT HOT!








Kennedy did so well in camp. I thought she might be mean and not want to share. Don't get me wrong she did have her moments. Overall, she was fantastic and it makes me feel better about sending her to preschool next year.




Laynie, Kennedy and Isla! CUTIES!




Grandma and Kennedy having a sweet moment.
In the end, the conference was better than I expected and I can't wait until 2015. Chicago, IL here we come!

Location:Scottsdale, AZ

A little of this and that

"Busy, busy, busy!" That is what describes our lives right now. After a much needed break for the last six months with doctor appointments, Kennedy's schedule is now again in full throttle. She had another nasal dilation on July 12th and it went very well. She is scheduled for another one next month and will likely have at least one more before the year is over. I am hoping if we keep up with cleaning of the scar tissue, Keni will have a better chance of keeping her nose open. Only time will tell if Kennedy's nose will stay open, but I feel really good that this time it will stay open and we will get that trach out soon!





Well..... let me tell you what little Miss Sassy Pants did last Sunday. After getting home from work, I was putting Kennedy into the bath when I noticed Little Miss had pulled out her trach. Grrrrrr. Not knowing how long it had been out I proceeded to put it back in with no luck. After Jeremy tried as well, we decided to head down to MUSC. I am so thankful for Kennedy's ENT team! On a Sunday evening, Carissa, her ENT PA, came and met us at the ER. After five hours and multiple attempts they were able to get a trach back in. Kennedy did show us however that she does not need a trach during the day. She was keeping her stats at 100% for the five hrs she was without it. Now we just need to get her to do that at night when she sleeps and we will be golden.




As some of you may know, we are packing up and heading out to Scottsdale, AZ, this upcoming week for the 11th annual CHARGE conference. I am very anxious about flying with Kennedy. Mostly about TSA and getting checked in at the airport, but also about forgetting something for her trach that I can't get at the local Walmart. I am very excited to meet all my FB friends and their kiddos. Joselain will be performing in the American idol competition they will be hosting, and I already get teary eyed just thinking about her up there. I will post lots of pictures and share our great experience when we get back.






...and here is a throw back to a moment we will never forget.

A must watch!

--- This is a video someone shared with our mom's group this morning! I loved it! Hope you guys will too! ---


http://m.youtube.com/watch?v=y6He0FWoFj0

July 4th fun.

Jeremy, Kennedy and I hung out with grandma and grandpa on the 4th (sadly Joselain is still on summer vacation with her mom) for a day of food and fun. Between the hit or miss summer showers, we hung out outside and played cards. It was a very relaxing day; nothing special planned... just go with the flow kinda day. Aunt Tammy was also down to enjoy some relaxation time. We didn't go to any firework shows because we knew it would be muddy and packed with tons of people. After dark, people in the neighborhood started doing their own fireworks. I was kinda sad we didn't go to a show because Kennedy loved them. She was in awed by of all the colors and sounds. Daddy brought some sparklers and Kennedy loved those as well. (They were the extra long kind) One of the very last sparkler of the night Kennedy did get a little burn but I think mommy was more upset than Keni was :-(. Overall, it was a fantastic day full of food, laughs, bugs and family.