One surgery, two surgery, ............tenth surgery

Here are some pictures of Kennedy before surgery this morning. I will update with how it went and pictures soon!

Location:MUSC

CHARGE awareness, Makes it to the beach

Kennedy's Uncle Johnny and Aunt Megan makes us proud by spreading awareness all the way in Hawaii!



~~~~Thanks to everyone who is wearing Kennedy's shirts proudly and helping to bringing awareness to CHARGE. It doesn't just help Kennedy, you are making a difference for a whole community of families who have a little hero just like us.~~~~

One Deaf Child: Presentation by Rachel Coleman

I just watched this video and I can't tell you how much emotion I have going through me right now. Happiness, sadness, hope and many more I can't put into words. I found this you tube video through another CHARGE mom's blog a couple of days ago and I kept thinking "I don't have one hour and four mins to watch that video" so I didn't. Then tonight I saw it again and I thought "I could just watch a couple of mins". Let just say I couldn't stop watching, Duck Dynasty didn't stand a chance. LOL ~~ For those of ya'll who don't know this women in the video her name is Rachel Coleman and she is the creator of Signing Time which in our house is called "the crack videos". Kennedy watches them all the time as well as the rest of us. I know that this video is kinda long so watch it a little bit at a time if you need to because it is worth finishing. I think my other special needs moms will get sucked in and won't be able to look away. I hope you guys enjoy it as much as I did. I think her story will show strength and courage to fight for what you believe in.



http://youtu.be/b1VUpNv80IQ

Hanging around

Mmmmm.....lemons

It's that time again...

We met with ENT on Thursday to discuss the future of Kennedy's nose blockage and her ear tubes. I pretty much told them what I wanted and thankfully she was on the same page as me. We have decided to do the CA(choanal atresia) surgery and place tubes in both ears on March 20th. Kennedy already had a tube in her right ear but unfortunately it came out and now is just sitting in her ear canal. Her left ear has the deformity and has always had a very small canal that made it impossible to place a tube. After dealing with four ear infections in the last eight months I am ready to have her ears fixed. Luckily, the Dr. said that the left ear is now big enough to place a tube. WOO HOO!!!! We also decided to wait on having the eye Dr. come in and place a stent in her left tear duct (I will talk more about that later) until we return to the OR in about 6 weeks to have the stents removed from her nose. My biggest concern this time is the stents. I don't know if you guys remember from the last CA surgery but the stents only lasted about 3 days because they were causing breakdown of her nasal passages. This time the Dr. is placing them differently so hopefully they will not give Keni any issues.. fingers crossed...The only problem that I foresee in our future is cleaning and suctioning those stents. The thought right now of holding Keni down and cleaning them 3 times a day makes me cringe. She is going to hate it and that is putting it lightly. Keni is in the "don't touch me unless I ask" stage. The "you better not try to suction me lady I will smack it away" stage. "If I don't get my way I will buck like a big nasty bull" stage. So, please pray for me that I will make it through the next 180 suctions sessions I have to endure for the next few months.

Bumps and Bruises

Kennedy has been keeping us on our toes lately. Now that she is a little more mobile with rolling and stair climbing we are on full alert. Sometimes, unfortunately, we can't be to her side fast enough. On Thursday, Feb 21st, Keni and I were outside on the porch enjoying a little sun at grandma's house. Kennedy was in her gait trainer (a fancy walker) and I had put up a ladder sideways across an opening that leads down two steps to concrete. I have done this many times but I guess Keni has gotten a little stronger than I realized. She ran and push the ladder and it fell along with her down two steps onto the hard pavement. I was up as fast as I could but still was not able to save her from this horrible fall. I immediately took her the the local ER where they did a CT scan to make sure she didn't have any brain injuries. After a clear scan and a pep talk from the ER doctor that I wasn't a bad mom, we were released with a clean bill of health except for a huge knot and some scrapes. I never want to experience that again, but I know sadly that will probably NOT be it. I just kept looking at Kennedy and thinking "man I wish I could have been faster or could have had longer arms" :( I feel like Kennedy has been through so many surgeries and procedures in just her 20 months of life that most people (including myself) will not ever have to experience. I feel as if I could have prevented this. I can't control the things that she was born with that need to be fixed, but I feel like I could have stopped this fall so she didn't have to have experience the pain. Today, I am glad to report that Kennedy is back to her normal feisty, stubborn and happy self. Mom, however, is still a little traumatized :)

Location:Grandma and Grandpa house.