Happy New Year!

It's been awhile since we've posted, but not much to report. We had a lovely Christmas with family and everyone was fairly healthy and home so that was great for us. Tobin and Oliver both enjoyed the time with mom and dad and grandparents. Oliver is still very cranky most days. We are sort of at our wit's end and not really able to figure out what is causing him to be so miserable. We think most of the time it's gas pain and pain from his body trying to process all the fat in his diet. There might also be some reflux going on and we're going to investigate with the GI doc again to see if we should try a different reflux med or increase the dose of the one he's on. We are just trying very hard to get through each day without breaking down in complete exhaustion and frustration. When he's happy he talks and coos and laughs and it makes us feel so hopeful again.

Oliver's seizures have been getting worse. I've honestly just about given up hope on the diet. Despite a few 10 day stretches without seizures while he is sick we are still seeing 7-8 clusters of spasms per month and now we suspect he is having at least 2 other seizures types as we see a ton of staring episodes and some episodes of generalized shaking behavior. While the clusters used to be shorter (under 5 minutes 90% of the time since starting the diet), the last few he has had are back up to the hour long really awful ones. Since starting the diet he's been miserable on the GI front as he screams/arches/passes gas about 4 hours per day now. His body just cannot process the fat without lots of pain.We're not sure if he would have the same amount of seizures off the diet and if they are back to lasting an hour while on the diet, I just don't know what the diet is actually doing for him.

We tried to move to the next phase in our Clonazepam wean this weekend, by dropping his morning1/4 of a pill. He had two awful hour long seizures on Thursday and Friday and we decided to go back to the 1/4 pill in the morning and hold there for awhile before actually making the next drop. We will check in with his neuro on Monday to see what he advises but after seeing those nasty seizures we are just nervous to make that change. the 1/4 pill in the morning might not be doing anything and the seizures could be from something else like teething or an ear infection but we just don't feel comfortable dropping right now.

Thank you to everyone for all of the amazing holiday cards, they were so great to receive. We also really appreciate the generosity of our friends, family and readers of the blog who have taken the time to send us money for equipment for Oliver. We received an ipad from family for Christmas and we are looking forward to buying some educational apps for Oliver to use in his development.