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"
Saturday, May 26, 2012
Actually sad the Dr. appt was ....
Kennedy was supposed to have a eye Dr. appt on Thursday to decide when we can schedule her eye surgery to fix her malformed tear duct. They called me that morning to cancel because the Dr. was sick and for once I was really bummed. I have been looking forward to getting a date so that we can have that fixed along with her tubes for the ears, MRI of the brain , and MRI of the temporal bones. ..I never thought I would sad to miss an appt. The next available appt is not till June 14th I guess I waited this long I can wait a few more BUMMED! Kennedy has been doing really well on her PMV and has been making all kinds of noise. Thanks to nana she now a little hole in her valve to help her a little with breathing through her month. Kennedy is very happy to get a little help in the passy miror valve (PMV) department because it is not her favorite thing to do. We are hoping to get her to where she can wear the PMV all day and have know issues. This will only get us closer to getting that trach OUT! fingers crossed people! This is the last week of school THANK GOSH! I think Joselain feels the same way. We are gearing up to go camping the first week of June. We are very excited as a family to get away for awhile. Then this will be another first for my Ken Ken so I am ready! We are on week two on the BD with Kennedy and it is going very well. We have has a little vomit when we push her food to fast ( we are learning ) or if Kennedy is doing a lot of coughing after she gets a full belly. Another positive note little miss is getting on a more regular nap schedule and I think it is to having a full belly is making my baby sleepy.
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