Friday, November 20, 2009


Hope is the last thing you lose. It's an amazing power, and how it can lift you up again. Even the tiniest little hope. Jacob is not close to being seizure free, but he's doing better today. I start to see more frequent seizures now, but it's at 6 pm not 11 am in the morning. A tiny step forward. A small improvement to be thankful for.
I know we have a lot ahead of us, but I take any day where Jacob is not seizing for hours and hours in a row. It's a better day than many days we have had this week.
Sarah has a really rough time with all of this though, and she was not happy to hear that we might be here another 4-5 weeks. I think she starts to not believe us when we say a time line. She knows that even with this plan, we could end right back here again. A lot to handle for a seven-year old girl. Joakim and I will both try to spend some more time with her as we now know we're here for a very long time. I think we simply have to.
Tonight Sarah is hanging out with Jen. Sarah loves being with her, so she will have a good time. Joakim and I will sneak in a dinner outside the hospital walls, since we do have nurse Luke tonight again. We did get the good news that my sister Jenny will come and spend Christmas with us. That will help us a lot, and Sarah is so excited!!!
It looks like we might get to the regular floor some time next week. The biggest thing to overcome is to not need too many interventions to stop Jacob's seizures, and him not needing suctioning every 20-30 minutes. The regular floor feels like luxury now. We get our own bathroom, shower, and can eat in the room!!! We get some more privacy, and maybe can even sneak in some wine one night! I have learned from my more experienced moms...
Have a great weekend! - Maria.

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