Sunday, January 11, 2009

New Year - turning 8

So, yet another year has gone by, two whole years completed seizure free - I don't feel as superstitious saying it anymore. For the longest time, I would hesitate to say that we have had seizure free days, then weeks. I would just say he is doing way better or that there haven't been any noticeable incidents or episodes, without specifying what I meant by incidents or episodes.
The diet continued through its second year with minor modifications. Over the past three months, the following is what changed and it has made life a whole lot easier of course.
1. Dinner times. I had mentioned earlier about how V would have to eat at a specific time - at least two hours before going to bed, about how he couldn't eat meats in the evening and how all of this could cause him to have nightmares. Well, as he started growing, his appetite has been increasing, he needs more food before going to bed. It started one day when he asked for a hot dog about an hour after he had eaten his spinach. I made it, he ate it and he was fine through the night - no nightmares, no jerking, nothing different noticeable. So I began giving him chicken or turkey salad, or a hot dog or a sausage in the evening as well. Not only did it help his appetite in the evening, he didn't get up feeling starved, or like sometimes wake up early only because he was hungry.
2. The night time jerking has been very minimal. In fact, it is hard for me to remember when I last noticed it. He seems to be way more normal with his night sleep.
3. He has been asking for foods that he didn't look at the past two years - again part of his growing up I assume. He will sniff in the air, say this smells good, then want to look at what the food is and whether he can taste it. He is really good about taking the no about the tasting if it is a total taboo food but he really seems to want those foods now.

All of the above made it so much easier when we did a road trip during this past winter break. I am so paranoid about what day we can leave and what day we can come back, thinking always to the first time all of this started - which was after our Portland road trip. Also, we were gone for 10 days which made packing V's spinach so much more challenging. School didn't end till Friday, when I started cooking his food which takes about 2-3 hours, if not more. We were to leave Sat. early morning - before which I was dropping my cousin and her family to the airport. Since we were going to places where we could get all of his usual snack food, that wasn't an issue. We tried to find restaurants where he could get some food at least - invariably, he would eat chicken salad and milk. The restaurant folks everywhere, even in a remote place were highly accomodating and provided for food that wasn't completely available off the menu.

V celebrated his eighth birthday and couldn't get to eat a great deal of the food but could get to enjoy himself without me worrying about what would happen, not letting him out of sight, etc.. He does have a great deal of temper tantrums at home these days as well anger issues. It could be one or both of two things - due to the low carb diet, it can cause anxiety - this is something I read recently - and his basic nature is what might be surfacing. He is able to remember and recollect several facts and incidents, surprising me all the time with the information he gives me. He does struggle with his spatial reasoning and really does not truly get Math, but is able to do what is taught to him - the program that has worked for him is touch math. He is also writing really neatly and his handwriting is a surprise, given where he started at. Reading is his strength (besides computers) and he is really enjoying doing it for which I am so very grateful. Things do change week to week depending upon how he is doing with his sleep and viruses but I continue hoping for the best and we keep charging ahead.