516 CALORIES

Tonight, we went to our neighbor's Grinch party. It was perfect, down to each little Grinch detail. There were drinks and lovely treats wherever you looked. I enjoyed the green chocolate dipped Christmas tree pretzels, the cheese, the red and green chips, the wine...and yes the grinch poop (green sugar coated sweet and salty snacks)!
Yesterday, I was invited to my first meeting on the Family Advisory Council at Children's Hospital. It was also their Christmas lunch. It was a lunch that is typically not served in the hospital room or the cafeteria, this was on real china in the board room. The decadent chocolate cake that ended the lunch was rich, and yes full of calories...but so worth it!
I guess we all endulge a little bit too much during the holidays. It's part of being festive. Well, except for our little guy. He is on a diet of 516 calories a day. At this diet, he still gained a pound in the last month...The extra calories coming from the increase in his seizure medications. No splurge on chocolate cake or grinch poop. Just because of needing some extra medications. It just shows how little calories Jacob burns in a day. It also got me thinking on how easily you can eat 516 calories without not even thinking about it.
Apart from Jacob's diet, it has been a really long week. When we came home from the hospital last week, we got one single night without seizures. We then went from bad to worse. We were back to 2 long seizures each night. We had to use up all our rescue meds again. Jacob's breathing was impacted, and oh was our little boy constipated...which by the way probably is one of the causes why we saw more seizures every night. I can't even start saying how stressful it is to see your child seizing, waiting for medications to kick in, and never knowing how much we have to give, never knowing when we will have to call 911. Not sleeping does get to you.
On Thursday evening, I had decided with Jacob's neurologist that we would take him to the ER if he started seizing again to give him some IV medications that works faster than his oral medications. It was as if Jacob knew that we were getting closer to a hospital stay again. He finally pooped after 4 days, and then stopped completely to seize at night! We have now had 2 seizure free nights at home, so hoping that this is not just a little break, but that we have figured out Jacob's new level of seizure medications.
Stuffed on the couch, I feel I really only have one Christmas wish this year - a seizure free Christmas at home, all four of us.
Love, Maria.