Well, it's official.......we survived the 1st month on MAD! Wow, hard to believe as it feels like we just started, but it also feels like we have been through the war in the last month. :-) We have learned a lot, but I still feel like we have a long way to go as well. We have been tracking everything (fats, proteins, calories, etc.) since Saturday and are doing a better job of staying within the numbers we were given by the Dietitian. Our new Excel spreadsheet seems to be working well and is user friendly for the most part. I have a few questions since our last meeting so have another call into our Dietitian and will hopefully get answers tomorrow.
Joshua has taken a bit of a back slide in the eating department. He is starting to refuse meals again and is not eating too much. I'm hoping it is just a phase and won't last long as he did have two hot dogs for dinner tonight which was great because he had not eaten most of today. I really don't want to go back to where we were when he was sleeping 18 hours a day and not eating.
Joshua's seizures are still hanging on, although I did not expect them to disappear over night and figured it might take a few weeks of the diet tweaking. We were only seeing seizures when he was sleeping so we felt pretty good that the drop seizure he had last Wednesday was an anomaly because he had no nap that day and his meds were late in the morning due to his blood draw. Apparently I spoke too soon because I was telling my sister on the phone tonight that it had been almost a week since we saw his last daytime drop seizure and it must have been due to an "off" day. Not more than 30 minutes later Joshua had a drop seizure while sitting at the island and then about 45 minutes after that he had another one in the bath tub (I think I need to learn NOT to say things like that, might have jinxed it). He had his meds on time today, had a long nap and his ketone levels were high so not sure what to think about it. It is definitely frustrating, but I'm not letting myself get freaked out about it. I know I need to give the diet time to work and to get the kinks worked out so we'll panic maybe in a few weeks or month. If I have learned anything in the last 5 months of dealing with this it is that nothing is a certainty and every day brings with it challenges and that we are living on a constant roller coaster. The part I hate the most is that I can never get comfortable because just when I am about to "bam!" - something hits and I go right back to where we were. It doesn't help that I hate the drop seizures the most so they annoy me more than the "average" seizure. LOL - that was a very strange sentence to read back over - like there is anything "average" about having a seizure. But, in an unfortunate way it has become our reality and is now just part of our everyday lives. His seizure count has been in the mid 20s per day for the last several days which is still better than where we were so I will take some joy in that and continue to hope we will see further reductions.
For some super awesome news - we have raised $3500 to date for the NW Epilepsy Foundation walk! This is amazing and I have been overwhelmed with people's generosity and willingness to donate, join our team and get involved. Team Joshua is currently #1 for the Tacoma teams for the most money raised, but I don't know if we will end up there as I know there are teams who have not input all their money yet. If you have not donated yet, but would like to - please hurry! The walk is on Saturday, June 16th. I ordered our Team Joshua shirts and they will get here this weekend. I cannot wait to finally get out there and "do" something after feeling helpless for so long. I think it will be an amazing day and I am so looking forward to it.
To donate go to: http://www.nwrunwalk.org/faf/home/default.asp?ievent=1015666&lis=1&kntae1015666=7A7AA561E86B48B2A0E7B45856B22FB0
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