Kennedy Grace Kulas was born 6/8/11 @ 10:10 am. At about 5 days old she was dignosed with CHARGE Syndrome and Dandy Walker Malformation. She is a blessing to our family. We hope you join us on this wonderful road we are taking! "Denstined for Greatness; But pacing myself"
Sunday, March 3, 2013
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.
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I still feel so bad looking at that picture of her after she fell. That is so sad. Hopefully the suctioning of the stents won't be so bad. Laynie's last surgery they made the stents really short and they were way up her nose so we couldn't even see them. They had to be removed in the operating room, but it was soooo nice not to have to keep them clean. I was surprised when she got out of surgery because she has had the other kind where they come all the to the end of her nose. Hopefully it won't be as bad as you are anticipating. It is so much harder now that they are at an age where they fight when we have to do something to them. Kennedy is as cute as can be and way to go with the lemon licking:)
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