A tough day

Here is a quote from a TS mom. She wrote a blog post about her daughter and doing tests and getting bad results, something that we will have to deal with for the rest of our lives. Anyways, here is the quote:

"and you know there will be a next time, and it makes your heart hurt.

Still, you are so not ready when the next time comes. It’s a mugger, and you’re not even walking after dark."

And it's from here: http://jenniferlawler.com/wordpress/?p=747

Tomorrow marks one month that Jack will be seizure free. I can not tell you how thrilled I am about that. I was beginning to wonder if that would ever happen. If we would ever get more that a few days freedom, but here we are, a full month. I'm still terrified, and I run into his room when he cries out in the night thinking he's going to be seizing but he's not, he just needs a sip of water and his blanky and to go back to sleep. We have side effects from the diet to deal with, like reflux I think, and we can only guess as to what's going on and what's making him not eat because he can't tell us yet. But the benefits far outweigh the side effect, even if that means spending 1/2 a Sunday in the ER because he won't stop crying inconsolably for hours and you think he might have kidney stones.

At the same time, as we hit the one month mark of being seizure free, we also got bad new. Jack has his follow-up ECHO today and we found out that his heart tumors have actually "grown significantly" instead of shrunk, like expected. And it is like being mugged, like having something stripped away when we were being so careful and though that maybe, just maybe we'd finally catch a break.

I don't know what's next yet. I'm waiting for a call back from the cardiologist after he consults with other doctors. I'm waiting for a call back from the TS clinic. It's a lot of waiting.

And don't ask me why the font is all funny. I tried fixing it and it didn't work, and I don't have the energy to fix it.

It's nothing like a gluten-free diet

I've had several people say that they know how difficult a special diet is because they (or their children) are on a gluten-free diet.

So let me first say that I get that a gluten-free diet is a pain in the ass. We did it with Jack for 8 months, the entire time he's been on solid foods so I know what it's like. It can be a pain, but honestly it's just more annoying than anything. Gluten is in everything and you have to always read labels. Now when I read a label not only am I looking for gluten but I look for hidden carbs. Even things that have zero calories can still have hidden carbs. I can't tell you the number of times I've gotten something home only to look at my list and not be able to use it.

With a gluten-free diet you can still go out to eat, with the ketogenic diet you can't.
With a gluten-free diet you aren't restricted to how many calories you can have each day, with a ketogenic diet you are.
With a gluten-free diet you get to drink almost anything, with a ketogenic diet there isn't much you can drink.
The list could go on and on. My point is, they are NOTHING alike and while I appreciate people trying to relate, it just get on my nerves when they compare the two.

I know that people aren't trying to offend me, they are trying to relate and say that they understand. They just don't know that they don't really understand.

So I decided to make a few video's to show what the diet is really like. This first one is about what it's like to feed Jack, how we get his meal into him and why it's important to get a balance of all of his food in.

I did the video very spontaneously so please ignore the mess. And because I had none of this planned, it's not completely comprehensive but it's close. I have no idea why it shows up so flippin' big. Oh well.

a dose of cuteness

Jack is quickly outgrowing all of his clothes. He needs a 3T in the waist and a 12 month in the length for pants. It's crazy. Thankfully I've managed to find him some pants with stretchy waist bands. As you can see, they are long but oh so cute and they fit his big cloth diaper bum well.

I sure hope that he slows down on the growing soon. My mom took us shopping and we now have some 2T things for when the weather gets colder and I really hope that he doesn't need 3T for the end of the winter. Last winter was long, too long and too cold so I'm hoping this one is a little kinder.


This is what he does when we say "touch down" and then he claps. It is very cute.



My house may be messy, but my baby is happy!

You just thought I was going to make a post without talking about the diet... NOT. Anyways, I got to talk about the ketogenic diet on national radio yesterday. I listened to it today and I didn't sound like a complete idiot, phew.

And last night Jack threw up. It was awful. He did his normal midnight wake up thing but instead of taking a few sips of water and going back to sleep he barfed everywhere. He was then up until 2 am. He also ate very little solid food today and did mostly his cream with breast milk combo. He finally ate a few bites of a keto cookie for dinner and then some avocado.

I'm planning on making him a "milk shake" in the morning for breakfast and sticking to all in one meals for another day.

seeing spots

A friend wanted to see pictures of Jack's TS spots so I though I would post them here. When the doctor first turned on the woods lamp (AKA black light) we were all in shock at how many spots he had. I searched and search this kid looking for these things before the appointment and I couldn't find anything at all. The neuro now keeps a woods lamp on the shelf in his office in honor of Jack.

Now that he's had some sun, some of the spots are more noticeable. I circled the spots in the first picture and then posted a picture without the circles. If you click on the picture, it will get bigger.


I think he has one on his other cheek too, but I'm not sure. I try to keep sunscreen on his face if he's outside.


His back. He has one one his bum too, but I didn't take pictures of that :-)


I'm not sure what that dark spot in the middle of his back is. It's new and it could be from the fall (ok 2 falls) he's taken lately or it could be TS related. Only time will tell.


His cute little belly. The one on the left side of his abdomen is the largest one that is ash leaf (kind of) shaped. The one on his left ankle is a typical big and blotchy one.


And without


And this one, just because it's cute.

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.