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williams syndrome wednesday

Parenting, special needs parenting, Williams Syndrome, williams syndrome wednesday

Williams Syndrome Wednesday: Sleep

We are now officially in the thick of the “ongoing sleep problems” often associated with Williams Syndrome. For us, it seems to be manifesting in ‘switched days and nights’ where she will sleep long stretches, sometimes for 4-5 hours, but only during the day. At night she is alert – sometimes 4-5 hours. No idea how to make her switch. I did get great sleep this weekend. I attended the Canadian Association for Williams Syndrome (CAWS) family conference. I got a great deal of information – perhaps too much. And left feeling both understood and overwhelmed. Still, it was worth…

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Parenting, preemie, special needs parenting, Williams Syndrome, williams syndrome wednesday

Williams Syndrome Wednesday: Not all news is bad news

Williams Syndrome baby no heart issues

A little update on the little miss. Obi met with cardiology today and she doesn’t have any of the heart trouble often associated with Williams Syndrome. This is outstanding, especially when you consider that heart issues are generally a defining factor in the disorder. I, of course, hope that the lack of cardio involvement will translate to a less severe manifestation of the syndrome but I know the two are not related. Still, a little sunny news goes a long way these days. It’s amazing. When you suddenly find yourself in uncharted territory, the way you see and process the…

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Williams Syndrome Wednesday: Related

Obi is not sleeping well. At least not at night. seems to be related to digestion…or maybe teeth. If it is digestion, I’ve read some WS kids have worsening digestive symptoms at 6 months, so could be WS related. Or, could be typical baby stuff. Who knows? I do know I look at every little thing and wonder if it part of the WS or part of life. EVERY little thing. I’m exhausted already. I hope this part gets easier. melanie

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