Friday, November 27, 2009


The holiday was hard this year. I started to think back on last year when we celebrated Thanksgiving together, and we had no idea what was ahead of us. Three weeks after Thanksgiving, Jacob got a severe case of pneumonia and it's like he never really recovered from it. After that illness, we have been in and out of the hospital for almost a year now.
I then thought back two years, and realized that we all went to the mall with Jacob this day. We had no concerns about Jacob catching a cold from someone in the mall at that time.
Today is very different, and so was Thanksgiving. The highlight of the day was hanging out in the hospital together. I sure have changed my expectations! They served a Thanksgiving dinner, so we enjoyed some turkey together. Sarah was then cuddling with Jacob in bed watching a movie. She was a bit annoyed that he decided to take a nap in the middle of her visit! I am so happy Sarah got to be with Jacob again.
Sarah and I went home and had dinner with good friends. We had plenty of food, and a great meal together. After dinner, we walked around the neighborhood watching Christmas lights, and the kids were having a snowball fight with the little snow they could still found on the ground. There were some moments throughout the night when Sarah was missing dad and brother. She knew it was different this year.
A musical angel landed on our door step for Sarah yesterday. It was a very special gift for her, and a symbol of her being Jacob's angel. She would love to thank the anonymous thoughtful person putting this gift outside her door yesterday.
Late at night, Joakim called and told me that Jacob's Thanksgiving had turned for the worse. He spiked a fever of 105 (!), and his white blood cell count was off. We still don't have the results of the blood culture, but we're both worried he might have a line infection (in his blood). Not great on top of the seizures. The seizures were sure more intense with a fever of 105. The big gun antibiotics are back on board again.
Today, Jacob has had periods where he has not feeling great. Probably from the infection he is fighting. He has also had periods of more intense seizures. To make up for it, Lisa from Adam's camp brought in tons of instruments, and sang and played with Jacob for hours!!! What a great treat. I got a work out in, and did my first Christmas shopping this year! Thank you, Lisa!
I start to feel a bit impatient, since I truly can't see an end to this hospital stay or Jacob's seizures for that matter. I am ready for Monday and the care conference. For you who know me well, you know that patience is not one of my strengths, so I will keep working on it...
Good night, Maria.
P.S. I forgot to let you all know! We graduated from ICU, and are up on the regular floor since Monday. It's room 838. Quite an improvement despite loving the staff down in the ICU.

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