Spending another night at Children’s

We are back at Seattle Children’s today with Colbey Raye.
Friday we gave her a bolus of phenobarbital and headed to the ocean for our mini family vacation. Only a half hour after we arrived to our destination she had another seizure and we were hoping it would be the only one during our trip but no such luck. She had a few more Friday night and they came and went all day Saturday. She slept most of the weekend and we front packed her around while sister enjoyed put put golf (sort of enjoyed), bumper cars, go carts, kite flying, walking on the jetty, building sand castles, running from waves, swimming and so so much more! Colbey Raye did have a happy evening yesterday and enjoyed eating a little sand and walking on the beach with daddy before she had another seizure, this time holding her breath and turning a little purple around the lips that made her a bit sleepy again. This morning after 2 more seizures that cause purple lips we headed home and called Neurology. They felt we should bring her in for observation, so we dropped Austyn Jayne off at home with auntie, unloaded a few things and hopped back in the car to head to Seattle Children’s. First thing, check labs for infection and everything came back clean, Colbey Raye is health so why the seizures? We aren’t sure yet, and our next plan of action is still unknown so she is being admitted for over night observation and her neurologists will be on duty tomorrow so hopefully we will be able to come up with a plan to slow down or eliminate these seizures, until next time. She is also desatting during these seizures, not as low as she has before, but low enough to cause alarm and a back up team to be called in (it was quickly canceled as her oxygen level bounced back fairly quick). She is extra sleepy, a little wobbly and off balance, but still full of smiles, snuggles and kisses! Our little trooper is so strong, she brings a smile to every nurse and doctor who visits! Love her to pieces, thank you for the thoughts and prayers, she is one special little angel.

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