DC mini vacation

What a weekend we had! Jeremy and Ann had a beautiful wedding and became Mr. & Mrs. Hazel!!!!! Congrats again and thank you for letting us join in on the fun. Kennedy did great on the trip, we couldn't have asked for a better two year old in the car 8hrs both ways! Joselain also got to celebrate her 10 birthday with a day in downtown DC. My cousin Amber and aunt Shirley were able to join us for her birthday. Along with aunt Debbie as well so it was family fun all weekend. It was nice to combine all kinds of things in one weekend but it comes with a price called exhaustion..zzzzzz..... Now it is back to reality and the Kulas family is one busy household right now. I will be getting back to the grid of classes and clinic (it is almost over ... Woo hoo) and Kennedy has a check up on Halloween with ENT! Everyone keep their fingers crossed that her nose is still open. If it is we should get a game plan on what comes next and of course I will keep you guys posted! 

Time is flying

Soooo sorry it has been so long since I have updated! Kennedy has gone through two nose surgeries since my last post! She has done very well and is hopefully on the path to getting that trach very soon! ---- She has a check up on Halloween so we will know more about what the game plan is for the rest of the year. They made one big hole in the back of her nose instead of two and so far it seems to be working! 😀🎉🎊😀 

We are getting ready to go on a little mini vacation to DC for our good friend Jeremy's wedding and to celebrate Joselain's 10th birthday. We are taking Kennedy on her first road trip. Hopefully she will do well with an 8 hour car ride!!! Wish us luck! 

I hope to update on a more regular basis but with me in school and going to clinic time is very limited! I promise to be better!

 

Kennedy's Fundraiser 2013

                           So happy to announce that Little Miss Keni's Cafe
                                           Fund Raiser has begun!


Please join us to support her by buying a box or 2 of your favorite flavor beverage. Proceeds from the sales are gong to benefit Kennedy's medical expenses and a 5K run to be organized by the Girl Scouts of America in Summerville, SC in March 2014. Also a portion of the proceeds will be sent directly to the CHARGE Syndrome Foundation!!

We are selling Coffee,hot chocolate, teas... etc..

It's simple...it's easy...it's the only healthy coffee with great health benefits! The coffee, Cafe Latte, Mocha, Green-Red or Black Teas that give your body an extra boost while supporting a great effort!

Directions

See attached web link...click...view...go to the buy products tab, on the top...click continue..products are at the very bottom.....add all your information for order for direct ship! ........

littlemisscafe.organogold.com/r/US/

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