Friday, June 4, 2010


We have been in sort of a new place with Jacob for the last two weeks. Jacob is not hospital sick, but also not doing great at home. It's kind of a new place for us. Either we know that we need to be at the hospital or we know that we can handle it at home. Right now, Jacob's days should be at home, they are just not the greatest. It sort of hurts my heart to see him feeling this way.
This time around, we're definitely dealing with Jacob's seizure medications making him to sleepy, too lethargic, and not just interested in much. We have gone down on two of his seizure medications - being really careful so he doesn't start to have uncontrolled seizures. I had a slight hope yesterday as we checked his blood level of one of his medications that it would be looking up for him - but the level is as high as last week. Luckily, his liver and kidney functions look great!
I have always felt very comfortable to make quick decisions. It just comes to me. The last two weeks, I am going back and forth on what to do each time we need to make a decision. Partly, it's because Jacob doesn't act the same way each day. Partly, it's because no one knows what is the best thing to do. We're also so involved in his care, so there is no neurologist simply making a decision. We're doing all of it together - also based on our comfort level. We do love Dr. C., but almost daily neurology calls are just not fun!
Strangely, we have also dealt with oculogyrical crises - from home. He typically gets those neurological spells about every two months. They cluster, and after a couple of hours, they completely take over Jacob's actions. The only thing that can stop them is IV Versed - only to be given in the Intensive Care Unit due to the chance of slowing down his breathing. This time around, they never clustered! He has still had anywhere from 2-5 a day each day, all of them very short. We have no idea if they are here to stay or if they will go away by themselves.
Our vacation to Breckenridge is coming up. We're supposed to leave next Friday. It doesn't feel great when there are so many things up in the air with Jacob. Being 1,5 hour away from Children's Hospital is far longer than half an hour. Dr. E. was strongly against having Jacob come along. She is more than anything worried about his breathing on such a high altitude for 8 days, and knowing how sick he can get in an instant. I wasn't really willing to give in completely, still hoping for some normalcy in this family once in a while. So, the compromise is that Jacob will get to stay up there for half the time, we'll then bring him back home again. We're hoping to get some longer shifts with our favorite nurse, so Joakim and I can spend another one or two days together with Sarah before I'll go back and spend the rest of the week with the little guy. It did disappoint me a bit, but then I reminded myself that we actually don't even know if we'll go at all until next Friday. Jacob can change so quickly, so if we get a shorter vacation together - we should be really thankful, and enjoy that time, rather than asking for more.
So as I am writing, I am hoping we can continue to stay out of the hospital. I am hoping we are able to figure out Jacob's seizure medications, so we get our happy smiley boy back. I am hoping that the oculogyrical crises will disappear mysteriously, the same way they always start. I am hoping that we can take Jacob to our support group's family pic-nic on Sunday. I am hoping we can go on vacation together in a week.
In the middle of my worries and analyzing Jacob's behavior in detail, I had some nice surprises happening this week. I was voted to be the speaker at our State graduation for the family leadership course I am taking. The other surprise is that Kim Christiansen from 9news wants to do a story on my sibling support program when it's up and running!
I will leave you with that for the weekend!
Love, Maria.

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