Today I went to lunch with a good friend of mine, Megan. She has a daughter, Cloey, with special needs who has had a feeding tube for years. We went to lunch and she told me about her daughters feeding tube and helped me understand it more. Her and her daughter Cloey even got a gift for Oaklynn...
It's a baby that Megan put a button in for Oaklynn to have so that she has a baby that has a button just like her!
I was able to show Oaklynn the baby and explain that she was going to get a button in her tummy, just like this baby! I was really good to talk to someone who is going through it and knows all about buttons. She was even able to show me how it works and how to change it. It was on a doll so I'm sure changing Oaklynn's will be much different, but it was still great to be able to experience it, knowing I wouldn't hurt the baby, before I actually have to change Oaklynn's.
Here is a little video about Cloey. She is one of the sweetest little girls I know. This video was done in 2006 so it's 6 years old. In the video you will notice them say that they didn't think she would survive this long. She is still alive and just as friendly and smiley today! Her parents make tough decisions daily about her health/life and are amazing caregivers to her. She does not have a diagnosis. She is the only one to ever have what she has. Please take some time to watch this video! She will melt your heart.
If you would like to follow Cloey's journey and learn more about her, here is her blog. . . http://princesscloey.blogspot.com/