I hate Rett Syndrome, but I don't think there is any other community that is as supporting in a time of need! We are struggling, but our Rett Syndrome family is here for us, and that feels amazing!
To answer Brandi's question, Caitlyn is not a milk drinker. Rarely we can get her to drink a few sips of strawberry milk, but it is few and far between. When we took her off of the bottle at 18 months (before diagnosis, or I don't know that I would have taken her off the bottle!) she quit drinking milk like she had before. We did find Ensure has pudding now, so we may try that.
To add to everything, Caitlyn has developed a sore on her tailbone. I am going to look at in when I got in to give her a breathing treatment, but I'm not sure yet what it is. It appears to be like a pressure sore of some sort. Hopefully it will heal quickly.
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