Friday, December 25, 2009


We have had the best Christmas we could have wished for. Everybody is at home, and is doing ok. Jacob is stable, and his seizures are manageable. He had a longer petit mal seizure yesterday afternoon, but with an extra dose of Ativan, he was back to normal in no time. His secretions are rough, but we're on it throughout the day. Jacob knows he's at home, and loves the attention of his sister and his aunt Jenny. He is carrying around a bit fat smile most of the day. He also sleeps so well knowing he is in his own bed.
Sarah loves to be at home. She doesn't need anything else, but having everybody around her. She is playing with her new toys, and beating everybody in wii and yathzee.
We're having tons of Swedish Christmas food that Jenny and I have been cooking this week. We're doing the traditional Swedish julbord for a few days now...
Joakim is enjoying being off work for a few days, and just hanging out with everybody, getting a well deserved break from work.
I was afraid of taking on Jacob's routine again, but it's like riding a bike. We all know it too well. It was hard to get used to a new nurse again, and we so miss our Shannon. Shannon came by our house the minute Jacob was home. She just loves our little boy. We're hoping the new nurse will work out, but we're a bit concerned about her not being able to carry Jacob...not sure how that will work in the long run...we always have to put Jacob's best first.
I was afraid that it would be hard to enjoy this Christmas, since the likelihood of it being our last Christmas together as a family is high. I was thinking it would put a cloud over us, but somehow we have been able to truly enjoy our time together. Maybe we have actually learned to enjoy the moment. It's also hard to not simply smile when you see how happy and healthy Jacob actually is today. It's also hard to not simply laugh out loud when aunt Jenny goes up and down on Jacob's stair lift completely hysterical from being afraid of heights!!! It's our evening entertainment in the house!
We're hoping for more healthy days at home.
Merry Christmas to all of you following us, and cheering for our little boy. We wish you the best of Christmas from the bottom of our hearts.
Love, Maria.
P.S. Mary Beth Graff gave us the best Christmas gift. She spent a morning taking pictures of all of us. Check them out at:
I can highly recommend her!

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