Tuesday, August 11, 2009


The two most beautiful words in the English language.
- Henry James
We definitely got a summer break. We had grand ma and grand pa in town from Sweden, and Jacob didn't show a slightest sign of illness. In fact, he was doing amazingly well. We finally figured out with the help of his neurologist the right medication for his myoclonus. Jacob started sleeping again, and his movements in his hands and legs were just so much better. Jacob could even start crashing little cars again! He was all babbly, and Sarah sometimes felt he was simply too loud! He loved the attention from the grand parents, and loved having a chat with them. We even got out of the house again. We went to Eldorado Canyon, and Chautauqua Park. All enjoying Colorado together. I lost count of the times we went swimming with Jacob. We had summer break for a little while.
The grand parents left this morning, and are still on a plane back to Sweden. Today started out wrong. Jacob's nurse couldn't come into work, and this was the day Sven and Lena were leaving. Joakim and I juggled our schedules to get some work done, and at the same time spending time with the kids. Jacob's PT session was awful. Whatever Nicki tried to do, Jacob was just fussing and crying.
When we came home from the PT session, Jacob was spiking a fever. He had 101.6. We did give him Motrin, hoping it would take care of it. I went to Boulder with Sarah for a hair cut, but Jacob's fever didn't give in. Joakim had to take Jacob to the ER before he would get worse. Due to Jacob's sepsis in June, he got straight back in the trauma unit. After many tests, we now know that Jacob has pneumonia again.
It just never ends. It's just so sad. We can only assume it's aspiration pneumonia again, since we're in the middle of summer. The hope that slowly came back that maybe, maybe Jacob's swallowing function wasn't as bad as the doctors were telling us. We didn't have to suction him much at all. Hope was there. Tonight, I can only imagine that the trach is up for discussion again.
I am trying to hold on to the summer memories just a little bit. Thinking back on waking up in the morning with both kids in our bed, going swimming, eating outside, having grand parents in the house. Appreciating normal life that most people simply take for granted.
Tomorrow I will spend the day between bringing Sarah back and forth to math camp, and being in the hospital. Thursday the plan was for all of us to go up to Breckenridge for a few days vacation. It's not going to happen. We will most likely take turns like we did in March. We'll see how Jacob does over the coming day or two, but for Sarah's sake it would be really nice for her to get away before school starts next week.
Our friend Jacquelynn asked me this morning if I was starting to worry about colds and infections. My answer was no. I simply didn't think we were there yet. The problem is that Jacob is his own worst enemy when it comes to pneumonia. There is no true cure for aspiration.
I will keep you posted as I know more tomorrow.
Good night, Maria.

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