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.

videos of the cutest kid ever!

Sleep study # 2

Well this sleep study didn't go as we had hoped. We had this study planned in hopes of getting the go ahead to have that trach taken OUT! Kennedy had been doing so well being capped 10 hours a day with no problems. We capped her at nap time and she was doing sooooo good! About 4 weeks after the stents were removed we started to see her struggle a little with the cap but decided to see where she was and went ahead with the study. About a week after the study both ENT and Pulmonary called and wanted to see Keni right away. The results found that Kennedy has an upper airway obstruction, pulmonary agreed but ENT doesn't seem to agree and wants another study done to confirm. Nana went with Keni to the study and definitely believes that kennedy nose is closing up and is causing her obstruction. So, where do we go from here you ask? .......... On Wed July 10 Kennedy will undergo a dilation of the nasal airway, thankfully just about an hour under anesthesia and its an outpatient procedure. ENT also wants us to see an allergy Dr. to see if Kennedy needs an everyday allergy med. With Jeremy's family history of allergies, I think this will be helpful. The ENT's hopes are: if she does need a med it might help with her secretions. All in all, it was not what we wanted to hear but it could always be worst. I feel we are still going in the direction to have her trach free soon. ~~~~ She did get approved to go from one liter of O2 at night to half liter WOO HOO!



Can't you tell that she loved it!

Location:MUSC