Monday, June 4, 2012

Update on Deacon

At one point Hirschsprungs was so visual in our lives. We thought about it every day, sometimes multiple times. When he had his iliostomy, whenever he was sick in the hospital, through his 6 surgeries, everyday all day whenever we would change his bum, and in his struggle with fine motor skills. Now as I sit here and watch him playing with his 2 siblings out of 3, completely potty trained (except for at night) and growing like a weed. Its a few weeks past his 4th birthday.
Whenever I think about this blog, my stomache clenches. I feel so helpless. I know there are huuge amounts of people wanting to know more about him and Hirschsprungs in general. But I dont know how to reach them. To tell people about how good hes doing and what Ive learnt about the desease and how to fight it.

2 comments:

  1. How is your baby doing? My baby has sshd, he has done with the pull through but he is not doing good, he takes less feed and always screams in pain. Is that happened after the surgery? This will get fine by the time? I am so worried about my baby, he doesnt look fine to me.
    Any suggestion?

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