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 the trek. I’ll talk a little about what I took away from each of the sessions in coming posts but have to say, I wish there had been a sleep session.
I fear this will be an ongoing topic as other parents have said it took till 4 years and beyond to really see an improvement. Pheeeesh. I’m tired just thinking about it.
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 information coming at you completely new too. For instance, if you’d told me when I was still carrying Obi, that I would go to see a cardiologist, one of a whole slew of specialists tracking my soon to be born baby, and I’d been pleased to be there and delighted that she could be followed at our local hospital I would have looked at you like you had two heads. Which part of ‘seeing cardiologist’ is good news I would have wondered. Isn’t the fact that you’re there at all bad news.
Everything has changed.
I met with a dear friend today, one who is also a parent to a child (2 in fact) with special needs. She asked me if I’d read “Welcome to Holland”. In fact she said “Has anyone tried to jam that Welcome to Holland shit down your throat yet?” The fact that she asked me, and more importantly that I knew what she was talking about and was able to ask if she’s read some of the responses made me acutely aware of how the old days are gone forever, replaced by a brave new world. One where news that used to sound bad is far better than real, REALLY bad news. None of which I received today. I’m grateful for that.
I’ll leave you with a photo, because if you got here by googling Williams Syndrome and just want to know what the baby looks like so you can see if she looks like your baby, you’re gonna need to have a look at the cuteness.
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.