Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Sunday, January 3, 2010

Abby was pretty tired today. She had a rough night last night. She got sick several times in her bed while she was asleep. I'm still not sure what the deal is with that, but it is quite an ordeal getting her a bath and back to sleep three times. She doesn't do it at all during the day. I thought it was reflux, which is worse when she lays down, but one time she was asleep sitting up with us. I will have to talk to her doctor tomorrow. We haven't seen a GI doctor yet, but I think it's just about time. It is such a minor issue compared to the other GI issues that are common in Rett. I am so thankful that this is our biggest concern with her eating. Many girls have difficulty even chewing and swallowing. I'm not sure what a GI doctor can do with kids her age, but it would be nice to explain what Abby is doing and see what he/she thinks. Maybe it is not that bad, but her pain tolerance is pretty high and she can't tell me how she feels, so it's better to be safe than sorry.

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  1. EricaJanuary 3, 2010 at 9:26 PM

    happens to avery every now and then too. i am not sure if it is a food intolerance/allergy or a Rett thing. It starts as a cough, then sometimes to a vomit. but not much comes out and then she is typically perfectly fine. its bewildering for sure. luckily the cough usually wakes me up in time to get her out of her bed but we have done the 2am bath here too a few times! keep me posted on what the GI Doc says!

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