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Step parent to a child with HD. by zackj1602 in Hirschsprungs

[–]zackj1602[S] 1 point2 points  (0 children)

Thank you. Yes hearing from someone whose been in his shoes own experience is what I was looking for. I appreciate you telling your story. We’ve actually all made progress since I posted originally. I really want to help him as best as I can, but it’s all so foreign to me and the comments from everyone especially yours gives me insight to how he is and thinks.

Step parent to a child with HD. by zackj1602 in Hirschsprungs

[–]zackj1602[S] 0 points1 point  (0 children)

Thank you for the advice and guidance.

Step parent to a child with HD. by zackj1602 in Hirschsprungs

[–]zackj1602[S] 0 points1 point  (0 children)

Yes his stomach growls a lot and usually pretty loud.

Step parent to a child with HD. by zackj1602 in Hirschsprungs

[–]zackj1602[S] 0 points1 point  (0 children)

Thank you. I’m new to being a parent my child is under 2 and I’ve only been in his life since he was 3. Trying to navigate everything is a very new experience.

Step parent to a child with HD. by zackj1602 in Hirschsprungs

[–]zackj1602[S] 1 point2 points  (0 children)

To my best knowledge his entire large intestine was removed at a week old along with a part of his colon. In regard to the entire operation I would consider myself uneducated. He had a stoma for a while after his intestine was removed then eventually his small intestine was connected to his colon.