Friday, December 4, 2009


I ask Sarah each day, if she has had a good day and why it was a good day. We also talk about it, if she has had a bad day. In the last weeks, I realize that the span of a day is too long to measure Jacob's day - good or bad. When I think about yesterday for example, we had good moments throughout the day, but not an overall good day.
I was so excited to see how well Jacob was doing in the morning when I came in to the hospital. He had physical therapy for the first time in weeks, and I was impressed with him sitting up in bed working so hard on getting his heavy head up, and rolling from side to side. He was also sitting up in his chair for an hour, playing and interacting with me. We had so much fun! This was the closest to our "old" Jacob I have seen in a very long time.
In the last two weeks, the seizures have been the hardest to control in the afternoon towards the evening. We saw the same pattern yesterday. The difference last night was that he also had a longer seizure where his skin color started to turn bluish despite his sats being ok. He also didn't respond to adavan as well over night as we have seen previously. He's also hooked up to an EEG again, so now everyone can see exactly how many seizures he has. I am pressing the button who registers a seizure as a "patient event" literally every couple of minutes...
So, I am trying to be positive about the moments when Jacob is doing better, and hoping that the periods of seizures will be shorter not longer today. I am also so, so hoping that the ketogenic diet will give us some results. They are pretty optimistic that we should at least see some improvements, but only time can tell...Some see results from the diet right away, for some it can take up to 3 months.
On Monday, Jacob will have a surprise visitor. His sister has the day off from school, and will spend the day with him. That will be a good surprise for both of them! Sarah has assessment in school in the morning, and then we'll go in and spend the day with Jacob.
Hoping for many more seizure-free moments today.
Love, Maria.

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