Crappy Anniversary

I'm going to randomly throw pictures from our family photo shoot into this grumpy post to add something fun to look at. Although great pictures deserve a post much better than this long complaint let's face it, sometimes things just aren't fair.

I think the best thing that I can say about our 7th anniversary is that we're all still alive, nothing tragic or traumatic has happened, and thankfully the marriage is fine.


We had big plans to spend our first night away from Jack. I agonized over if we should go or not. My mom is great with him, they love each other and in fact when he gets tired of me he asks (and sometimes screams) for GiGi. At the same time, there is no doubt that Jack has had a rough road and there is a lot to manage when it comes to caring for him. I worried what would happen if he didn't eat all of his dinner thus not getting all of his evening meds. What if he gets picky about food and doesn't eat what I leave for him? The list of worries about his diet, his seizures, his heart, could go on forever. At the same time, Jonathan and I could both use a day away. Even if just one night to have to ourselves and Jack has been pretty stable for a while so we decided to take the plunge and just do it. We weren't going far so we could come back if we had to. For me to not wake up every time Jack rolls over and grab the monitor to see if he's having a seizure and to just get a good nights sleep would make me a new person. Because even though Jack is (mostly) sleeping through the night, I don't know if I ever will after what we've been through.


We were planning on going to the little town of Fredricksburg, about a two hour drive (close enough that we could rush back in an emergency) that always does things up so great for the holidays. I couldn't wait for the lights, the German food, and the vineyards. What more could you ask for?

Ok, I could come up with a few things.


First, Jack started to have a runny nose. It only went down hill from there. I had hopes for quite a while that it would clear up... but it didn't.


And to make a long saga short, because I'm tired and want to sleep, we are all sick with some nasty virus and the trip is off. I had my annual OB visit and internal sonogram (fun fun) where I was told that everything is fine but it does not feel fine at all. I come home to Jack not wanting to finish his dinner and Jonathan about to pull his hair out (his own, not Jack's) and everyone is cranky and miserable.

I think the main reason that I feel sorry for myself and am throwing this pity party is because I do so much. And I know that most mom's do a lot, but a keto mom has 10 times more to worry about, to think about, to plan about and to figure out. I wouldn't trade the diet or what it has done for my child for anything, I would just like to get away for a day and at least pretend that I am just a normal parent.


So we didn't buy each other Christmas gifts or anniversary gifts because we were going away on this great romantic trip and instead we all shared some nasty little flu-like virus. I just want to pout a little more and then go to sleep for about a week but in reality I won't sleep much at all because I'm a mama with a sick baby who also has epilepsy and I wake up every time he makes a peep. Thankfully Jonathan is off for the next two weeks so we can all be cranky and sick together. Sure we can re-schedule our night away, but Fredricksburg won't be the same as it is this time of year and God only knows when it will actually happen because of Jack's health and everything he has going on. We go for his heart echo next week and he may be started on some kind of oral chemotherapy so we know we won't be going anywhere anytime soon if that happens.


But really, I can't whine too much because after all I have a wonderful husband who would swim through shark infested waters to bring me a glass of wine and the most beautiful child in the world.


Now lets pray we're all better by Christmas.

My Jack-O-Lantern

Jack had a good Halloween!

He didn't quite understand the whole, ring the bell, get a treat thing, but he did have fun socializing and seeing everyone.


And I mean, EVERYONE!



This is him with princess Cassey (and daddy). Cassey always comes out to great us when we go check the mail and is a very sweet little thing.



We hung with the neighbors for a bit and then of course he had to swing. He though it was pretty cool that he got to swing in the dark.



And after his bath he was checking out the loot, which was the first time he was interested in the bucket! While he was eating dinner I went to the neighbors houses and handed out little toys for them to drop in his bucket instead of candy. He would have been fine with collecting candy and then handing it over, I don't think he would have noticed a thing, but it was good practice for us for what to do next year when he is more interested.

All-in-all it was a good evening. It was fun to socialize with the neighbors and this was the first year that we have run out of candy from having so many kids come by. It was super fun though and I know that next year will be even more fun!

set back

Well, Jack had a few seizures.

I still haven't been able to pin down what from. I don't think that it could be from the dried fruit that someone gave him, but I have read that forbidden food can cause seizure up to 10 days after and the first one was only 2 days after. That story is a whole other post but I have never been so livid with another parent. The other thing that changed was his nap schedule. We finally dropped the morning nap and we were able to do things like story time at the library, and play dates. But we're going back to two naps for the time being. Drats! We've also started giving him his meds right before we put him down for bed so that it's closer to 12 hours between doses. That means we have to pin him down and use a syringe to get some of them in, which is no fun at all. We (Jonathan and I ONLY) were planning on going away for 2 nights for our anniversary in December but because of all of this, I'm re-thinking it. I don't think my mom could get the meds in him with the syringe. I wonder if we get all of it in him because as hard as we try, he still manages to spit a little out.

So here are the things we've changed:

• meds 12 hours apart (or very close to it)
  
• added 2nd nap back in
• cut out kool-aid
• NO sleeping in the car

Two of the three seizures happened while he was sleeping in the car seat, which means that we aren't going to let him sleep in the car anymore. Of course that means that we don't go far from home and that we always head back an hour before nap time so that we can get here. And when I think about it some of the seizure that we saw towards the beginning of the diet were also while sleeping in the car. It means that the furthest we go for a long while is the doctors office at Dell Children's. The only exception to that is next weekend when we go to TSC camp (which is already paid for). We are really excited about it and the plan is to travel while he is awake and then attempt to get him to nap there. It really limits what we can do and who we can see but thankfully the weather is great right now and we have some good parks that are close.

Jonathan has been working a ton this week and I've been on the phone all week with the dietitian, the nurse, and our old dietitian trying to figure out what is causing these. I'm also officially done breast feeding so I think my hormones are all over the map, which really doesn't help.

I'm left wondering if this diet is going to be his miracle. We were two months away from starting to wean his meds and now the doc wants to increase them instead. (I'm supposed to check in with him on Monday and I want to ask questions before we do the increase.) I'm feeling like we are out of options, because if this doesn't work we are back to the surgery option which wasn't looking good to begin with. The chances of this being HIS cure is only 30% but after getting seizure free I was hanging my hat on him being in that 30%, now I'm not sure anymore. The good news is that I have heard stories of kids having break through seizures and then returning to no seizures for over a year. I suppose I was just hoping that for once my kid had caught a break.

My new favorite number

Dear Jack,

So you are actually closer to 19 months now than 18 but I figured I would write you a letter anyways. And this is a special letter, because it's written on a special day. I feel like I want to climb on top of the roof and shout for all the world to hear that you have now been seizure free for two months. TWO WHOLE MONTHS! I've hesitated to say too much or to show my excitement because it could all change in an instant. I love looking at your seizure tracker and seeing a big fat Zero there every day. In fact, zero has become my new favorite number. And I'm starting to think that maybe, just maybe, we've found our miracle. We still have a long road ahead of us but when we hit the two year mark of you being seizure free, I think I really will climb on top of the roof to celebrate. Or maybe just take you to Disney.

The last 6 months have been exciting and challenging as you have successfully turned into a toddler. We wondered if you would ever walk as you waited just long enough to make me start to worry. But then you took off and now I have a hard time keeping up with you. In fact you like to move so much that running errands with you has become very difficult. The fact that you don't want to hold still coupled with the fact that I can't give you anything to eat in the shopping cart usually leaves me wanting to pull out my hair and buy some really good ear plugs. And we are at the grocery store several times a week because we always seem to need some kind of magic food for your diet.

You have also developed quite the vocabulary and are like a little parrot. The other evening we were driving home and got passed by a motorcycle that was going at least 100. Daddy yelled "idiot" really loudly and you promptly repeated it. It was very hard not to laugh. Thankfully, you haven't said it since and neither has daddy. You pick some funny words to say too, like purple and cracker. You don't eat crackers so I have no idea why you say it or what it means. You will also sit a the piano and play and sing, which is really stinkin' cute. I love it when you are in your crib in the mornings and you start singing the dada song. You make it up as you go along and it is clearly a song about dada. You could make up a song about mama on occasion too.

And speaking of your crib, lets talk about sleep for a moment. I really REALLY appreciate it when you sleep until at least 7. I can't complain about 6 because for months you woke up at 5 on the dot but on days when you sleep until 8 or 8:30, I feel like I've won the lottery. Because I'm up late preparing your meals, cooking, putting dishes away, weighing out things and trying to figure out how the heck to get the exact number of grams of egg in the bowl because eggs are so dang sticky that it's next to impossible to get the right amount. A little sleep-in is much appreciated.

So my big boy, and when I say big I mean the average size of a 2.5 year old, we are still keeping a close eye on you between the heart tumors and the seizures (or lack there of). I'm still nervous and stressed and this parenting thing has taken me on a whole new road that I didn't expect, but I couldn't have asked for a better kid to go on it with. You are amazing and sweet and funny. I love how you say "weeeee" when you go down a slide and how at story time at the library you have to hug every other mom there, you little flirt. You make me smile every day and because of you I am so thankful for all that we have and for every day that I get to be your mom.

Love,
mama

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.

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.

Keto F&Q

I'm just going to post the email that I got that has the facts and questions. It's very informative and will hopefully give you a better idea of what we will be dealing with. Part of the diet is that Jack can't have anything touch his skin that has carbs in it because he could possible absorb them and it could cause him to have a seizure. So all of our products are being put in a box. All of his soaps, sun screens, shampoo, bubble bath, diaper wipes, diaper creams, and toothpaste are being replaced with things that are Keto friendly. He also can't take children's meds of any kind so no tylenol or motrin, we'll have to split an adult tablet and get that into him instead.

How the diet works is that it forces your body into starvation mode and makes you produce ketones. When the ketones are high enough about 30% of the time it stops seizures. Jack is starting on a 3:1 ration so that's 3 grams of fat for every one gram of carbs or protein. It's a bit brutal and cooking the meals made me loose my appetite. The doctors keep saying how hard it is on families to follow, and it will be. We have no idea what we'll be doing about Christmas and Thanksgiving. But it can't be any harder than watching my baby have seizures day after day after day.

Anyways, here they are.

Frequently Asked Questions....

Starting the diet is a little daunting. Hopefully some of these FAQ's will
help as you begin to prepare for initiation and/or face some of the issues
that come up with the diet. Some of this may not make sense to you at this
point, so it may be helpful to print out a copy for your files!

What products can we get to help the diet be more palatable?

Sweetners: Many parents use Stevia, a natural sweetener found in most
health food stores. Sweet 10 or Sugar Twim may also be used. Most families stay
away from nutrasweet (aspartame) since it can increase seizures in some children

Drinks: Getting the fluids in and providing an enjoyable drink during
the day is always important.

Koolaide...the flavors that do not contain any thing that may
affect the diet are Black Cherry and Lemon Lime. Buy the unsweetened packs and
use a keto friendly sweetner. Look for flavors without Maltodextrin if your child is sensitive.
Adding a little club soda will give it a fizz.

"Fruit Waters"... Glaceau Fruit Waters: they are available in natural foods type grocery stores
and even now in some more regular supermarkets
like some Safeways. Good flavors are watermelon, cranberry mint, honeydew, strawberry banana,
raspberry lime. Many parents use 'fruit waters' like the Sam's Choice "Clearly American."
Most of these do contain Aspartame...a seizure trigger for some kids. If you use them, or any of
the diet sodas, be sure to watch for any signs that the aspartame may be a trigger.
Some of the Œfruit waters‚ also contain sugars...be sure to read the label.

Bickford Flavorings...great carb free flavorings to help create tasty dishes...
They are non-alcoholic, contain no sugar and no salt. Hundreds of flavors are available
by calling (216)531-6006 with credit card orders.
Bickford Flavors 19007 St. Clair Ave., Cleveland, OH 44117
"sweetening ice cream, making popsicles, making "keto-drinks." So, far, I
use the strawberry, chocolate, vanilla and peanut butter to make ice cream.
I use the apple, with a little stevia, for "apple juice." They also have
colorings -- the beet red, annatto and brown are supposed to be the most
natural." DeEtte

What can we do about constipation?

Constipation is a common issue with our keto kids. These are some of the options parents on the list
are using:

Cal/Mag/Zinc II from Whole Life (1-800-748-5841). It doubles as the calcium supplement and constipation
remedy and is keto friendly.

Milk of Magnesia (original flavor) which can be purchased over the counter.

Mineral Oil is another option

Many times upping the amount of Magnesium will help.

Some have had success with Aloe Vera Juice

What do I do about a fever and pain????

Feverall acetominaphin suppositories...best for younger children given the way it‚s admninistered!
Can be purchases at most drug stores like Walgreen‚s, Eckerd‚s, or Osco‚s.

Adult Motrin...break tablet to get dosage right for older children.

Tempra Infant Drops

McNeil Brand Tylenol adult strength cut down to the appropriate dose.

How can I get keto friendly meds when my child is sick?

H-B Drugs. Full service compounding pharmacy specializing in
creating customized medications in order to most appropriately suit a patient's unique
needs with a special interest in pediatric epilepsy and the ketogenic diet.
1-888-383-2010 or 1-201-997-8488 FAX 1-201-9978488 located in N. Arlington, NJ

Ridge Road Pharmacy Ridge Road Pharmacy will compound any med in a keto friendly style.
They also compound keto friendly vitamin supplements. 1-800-Ridge Rx

For cold symptoms... Scott Tussin Original Clear Five Action Cold and Allergy Formula (sugar
free)
I called around and found it in stock at a pretty local pharmacy. It can
also be ordered, or you can get it shipped from some place in Rhode Island
1-800-638-7268


How can I figure a snack into my child‚s meals?

Though meals should be kept as equal and evenly spaced as possible,
many have found it helpful to add a snack during the day...either
to ease snack time at school, for an after school snack, or a pre bed time treat.
One method is to subtract the number of calories you want for the snack from the
total cals for the day and plan the snack using those calories. Use the remaining
calories split among the three meals.
A bedtime snack often helps keep the ketones up during the night, sometimes
helping to control night time or early morning seizures.

Where do I get a meal planner to plan meals at home?

One that's very easy to use and free is available for download at
http://www.ketogenic.org Just scroll down towards the bottom


How can I find nutritional information for foods I want to add to the meal planner?

The USDA site with info regarding nitritional info is at http://www.nal.usda.gov/fnic/cgi-bin/nut_search.pl

Apparently, we're the hippies

Jack is napping so I'm just going to hit "publish post" when he wakes up, we'll see how far I get.

We met with the nutritionist on Friday. It was okay, but you should have seen the look on her face when I told her that we don't give Jack artificial sweeteners, nor do we plan on giving them to him. I wanted to turn to Jonathan and say, "Do I have something on my face?" because I swear I spoke english to her.

They DO cause brain damage in rats. Yes, it's in large quantities and yes, they are rats but this is a child who already has brain damage and this diet it to deal with brain issues. Call me crazy, but it seems completely backwards to give him something that could cause more damage.

Jack has never had saccharin and while he's little at least, he never will. He has also never had high fructose corn syrup or hydrogenated oils. We call them death food around here and for over a year now we have all avoided them all together. He also doesn't get MSG and as little soy as possible, but I do know that soy has been in a few things. We read labels, all of them.

Jack will have to take vitamins because this diet is lacking in a lot of ways and she gave us a powder to try and give him. He's not a huge fan. She did say that we could give him Scooby Doo Vitamins instead but of course those have artificial sweeteners. I'm sure we looked at her like she had just told us to feed him cyanide tablets.

That being said she gave (AKA: is billing us for it later) something called KetoCal. It's a formula that kids on this diet are put on. There is this whole little recipe book using this formula. Oh yeah, and it's about $35 per container. Ouch. It's also for babies who aren't on solids yet. She gave us 2 cans, one is for the savory recipes and the other is for the sweet. The first ingredient on the sweet one is Hydrogenated Soybean Oil. WTF? Really, after we went on and on about not giving him all of this crap, she gives it to us anyways? I seriously wonder if she believed me when I told her that HE DOESN'T EAT CRAP. It's either that or she thinks that there is no way we can do this without the crap.

And on that note, I will admit that compared to other parents, I'm really crazy about what Jack eats. God forbid I want him to be healthy. God forbid I set him up right from the beginning and don't feed him all kinds of carbs and sweets that are addictive and that create picky eaters. Not only do they create picky eaters but it has been shown that if they don't eat sweets for the first 3 years, then they won't want them as they get older. This isn't just about feeding him right, it's about setting him up for the rest of his life. And look what being so picky has given me, I have a child who will eat just about anything I put in front of him, he likes chicken livers, vegetables, and salmon is his favorite food. Aside from this genetic disorder that is no one's fault, he is extremely healthy. He rarely gets sick and he is a very happy kid.


Now that you've read my ranting about food I guess I'll go on to discuss how the diet actually works. And with that sentence, Jack is up, guess you'll have to hear about that later. Or you can read about it here. Charlie's Foundation