Wednesday, May 5, 2010


Jacob had a better day today! No fever, better looking color, and no seizures to hunt. The cough and secretions are still there, but it's manageable. The antibiotics have kicked in!
Sarah visited with Jacob this afternoon. She hasn't been here in a while, so checked out the new selection of movies, did a craft with her brother, and tried some of the new ice cream flavors down in the coffee shop. Overall a good visit!
It's up to us, if we want to go home tomorrow or Friday. We'll see how tonight goes. One part of me always wants to get out of here as quickly as possible, but another part is also thinking that we also don't want to land back right here again due to not being able to stay on top of his secretions as other tasks compete with Jacob's care at home. We'll see what tomorrow brings. We can at least see the light at the end of the tunnel. We should be home by the weekend. All the doctors know that Jacob can so quickly change, so whenever we talk about discharge all doctors start to of our favorite doctors even leaves the room - just so Jacob won't hear the plans...It has started to become kind of funny!
We'll go home on IV antibiotics this time. In that way, we can make sure Jacob absorbs the meds, always an issue with diarrhea on Jacob's part. It's a bit more work, but we're so thankful that we can do it from home with his medi-port.
THANKS, THANKS, THANKS to everyone for your well wishes and the Children's Hospital cards! He got 30 (!) cards tonight from all over the world (Sweden, Spain, Germany, the Netherlands, New Zealand), Colorado and other places in the US! It was so nice to read all the personalized messages to Jacob as I had my heated up dinner. I LOVED it! It is such a neat idea. His whole door is decorated with them.
If you still want to send a free card, go to:
Hoping to send the next update from home!
Love, Maria.

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