Well Kloe as expected had no interest in doing any of the tests to check her heart. Every time someone would even come within three feet of her she would start to fuss and cry. They were able to do the EKG and that came out normal, but the echo will have to be done in six months under sedation. I am grateful that we were able to get a little piece of mind for a moment. The doctor did inform us though that because Kloe has scars on her heart from surgery she does have a chance to develop a irregular heart beat. This could develop at any time without warning and as a mother this makes me worry. I feel a little discourage because I thought that I could stop my worrying, but I am learning that as a mom of a daughter with special needs my worries will never go away. It is not a easy thing to swallow but acceptance is the first step. I guess its not too different from other mothers because once our little ones are born we develop the mom sense and with that comes with a constant worry.
One thing that really made the doctor visit more interesting was before we were supposed to go back to run all the tests I decided we all better hit up the bathroom and change Kloe's diaper in the process. As Briley is going potty I set Kloe up on the changing table the have provided and proceed to change her diaper. As I went to throw the dirty one away a grab a new one Kloe decides she is going to pee all over the table. I hurry and pick her up so that I can save her outfit and clean up the mess. I let her stand on the floor of the bathroom so I can clean up the mess so I can put a new diaper on her. While I am cleaning Kloe thought that it would be funny if she peed all over the bathroom floor and her no longer dry clothes. Well needless to say all I could do at this point is laugh. So here we are in this bathroom with pee all over the floor, with Kloe, Briley, and myself laughing. What else could we even do. We finally got everyone cleaned up dressed and outside, the only thing that didn't make it was Kloe's shoes, but it gave me a good excuse to buy Kloe some new shoes.
At the end of the appointment the doctor told us that he expects Kloe to live a normal life span of a person with Down syndrome. I had to ask him exactly what that was and he told us that you don't tend to see people with Down syndrome live to much long than into the earlier 50's. This really hit me hard, and although in the back of my mind I knew this to be true I haven't ever thought about it. I was so worried getting her past the first year of her life that the fact that her life span would be short didn't even occur to me. Thinking about what this means is difficult for me because I don't think anyone wants to hear they will out live their children, but it does make me remember that no one knows when it will be their last day. I will not let a day go by to know how grateful I am so have spent the time with my family and my sweet Kloe. I will make her life full and happy, and not let stresses take away from the happiness we have. Our life over the last two years has been a whole lot of stress, but in the last two years I have come to realize and accept that I can only be in charge of how we handle what is given to us. I do not regret one thing I have said or done and for that I hold my head up each day and be proud of the person I have become. I can thank Kloe for putting that perspective into my head and heart and because of her our family has learned how to be better people.
One thing that really made the doctor visit more interesting was before we were supposed to go back to run all the tests I decided we all better hit up the bathroom and change Kloe's diaper in the process. As Briley is going potty I set Kloe up on the changing table the have provided and proceed to change her diaper. As I went to throw the dirty one away a grab a new one Kloe decides she is going to pee all over the table. I hurry and pick her up so that I can save her outfit and clean up the mess. I let her stand on the floor of the bathroom so I can clean up the mess so I can put a new diaper on her. While I am cleaning Kloe thought that it would be funny if she peed all over the bathroom floor and her no longer dry clothes. Well needless to say all I could do at this point is laugh. So here we are in this bathroom with pee all over the floor, with Kloe, Briley, and myself laughing. What else could we even do. We finally got everyone cleaned up dressed and outside, the only thing that didn't make it was Kloe's shoes, but it gave me a good excuse to buy Kloe some new shoes.
At the end of the appointment the doctor told us that he expects Kloe to live a normal life span of a person with Down syndrome. I had to ask him exactly what that was and he told us that you don't tend to see people with Down syndrome live to much long than into the earlier 50's. This really hit me hard, and although in the back of my mind I knew this to be true I haven't ever thought about it. I was so worried getting her past the first year of her life that the fact that her life span would be short didn't even occur to me. Thinking about what this means is difficult for me because I don't think anyone wants to hear they will out live their children, but it does make me remember that no one knows when it will be their last day. I will not let a day go by to know how grateful I am so have spent the time with my family and my sweet Kloe. I will make her life full and happy, and not let stresses take away from the happiness we have. Our life over the last two years has been a whole lot of stress, but in the last two years I have come to realize and accept that I can only be in charge of how we handle what is given to us. I do not regret one thing I have said or done and for that I hold my head up each day and be proud of the person I have become. I can thank Kloe for putting that perspective into my head and heart and because of her our family has learned how to be better people.
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