The magic diet

We've now been on the ketogenic diet for about 2 months. I spend an average of about 2 hours a day dealing with Jack's food weather that be assembling meals, cooking food, meal planning, or a combination there of. It's exhausting and my brain hurts from all the thinking. There is a lot of thinking involved especially around our schedule and where we are going to be for what meals or who is going to be here with Jack and what he will eat best for them.

Really, this is the biggest pain in the ass ever.

However, it is the first thing that has truly made a difference in Jack's seizures and that right there makes it all worth it. I will slave, have swollen feet for as long as it takes, stay up until midnight and only get 4-6 hours of sleep, and have a headache from thinking so much for as long as it takes. For the first time in all of this I feel like I'm actually able to do something to make a difference for him. And that alone is priceless.

When we were first starting to diet I had a lot of anxiety over all of this. I still have some but I feel like I know what I'm doing now and have a handle on things. That is until I started seeing Halloween decorations everywhere. I tend to use my niece Grace as a point of reference for Jack and what stage he will be at because she's just a year older. And then I remembered her at the halloween festival last year and being so excited about playing the little games to collect candy and trick-or-treating. And how Jack can't have candy and how I'm even too paranoid to take him to the festival in fear of someone giving it to him and him not understanding that he can't eat it.

I think what I'll do is load the neighbors up with little toys. I go to the dollar store or something and get little things for them to hand out to him. They all know Jack and his story so it won't be an issue at all and I'm sure he will think it's great fun. And I hate to not take him to the festival because of that but I also hate to be the parent who constantly hovers over her kid.

And then there is Thanksgiving and Christmas and honestly, the thought of that makes my head want to explode. I see it working one of two ways. Either we be the hovering parents constantly or we just don't go. Really, it's enough to make me want to pack up and just go find a cabin in the mountains for the holiday. Just the three of us. I don't think that's very reasonable but I can tell you that there is no way in hell that we are doing 5 different Christmases again. And I may need drugs or large amounts of alcohol to survive the whole thing.

In all honesty I don't think Jack will care to much about his food being a little different. It's all the other kids possibly handing him something, or him stealing a cookie from them and constantly having food out on the counters that he could get into or someone could un-knowingly hand him... that's what makes me want to barf.

Uuug. But until we actually have to deal with that, I will continue to thank God daily for this magic diet, for what it has done for my baby, and pray that we can get the last few seizures ironed out. Every seizure free day is a step towards a normal life. And we will do whatever it takes to make it work.

Guess what...

I have almost a whole day to myself! A WHOLE DAY! I thought I had a dentist appointment this morning and then I have a chiropractor appointment this afternoon (with a massage!). So I lined up a sitter for the whole day. My friend Alisa who is currently an un-employed nanny is taking care of Jack all day. Then I realized that the dentist appointment is actually NEXT Wednesday. Oops. Maybe I "accidentally" did that on purpose? So anyways, I've had the day to myself, no pokey things in my mouth, and I get a massage. It's just brilliant!

I saw a movie earlier today, now I'm sitting in a coffee house drinking hot tea and playing on the computer. I'm going to work on Jack's baby book and then go to my appointment. Woo Hoo!

This is the longest I've been away from Jack EVER. I can't stop thinking about him, about what he's doing, if he ate well, if he's having a good time, etc. But I think some time away to slow down is a good thing.

since I've been neglecting you

I'm too tired to actually come up with something clever to say right now. Jonathan is working a lot more right now so I'm even more busy that normal around here but at least I'm managing to keep up with Jack's food.

We go on the 26th to get all of the test results from our hospital stay. The doctor said that they look better than he expected. I have no idea what that means, but it sounds good. And his genetic testing came back that he does have TSC1 so now Jonathan and I have to be tested which won't happen until September because we have to drive back up to Dallas for it and Jonathan can't take time off work for that right now.

Anyways, here are at least a few pictures.