Getting nervous

I'm now officially nervous about tomorrow. Tomorrow morning we take Jack back to the cardiologist for his repeat echo to check on his heart tumors. It a matter of if we're going to spend the rest of the week relieved and having fun at home (catching up on cooking and swimming at the gym) or if we're going to be scrambling trying to figure out how to get Afinitor, the new drug the FDA approved for brain tumors in TSC kids, paid for. Because using it for heart tumors is an off label use the insurance won't cover it and we got denied for MDCP (Medically Dependent Children's Program), which is a whole other post to itself and which we are appealing so I'm on the phone with doctors offices constantly as it is, so it would cost about $3000 a month. We are hoping that NORD (National Organization for Rare Diseases) will step in and pick up the tab like they did with the ACTH that cost $60,000. Or was it $80,000.... I don't remember.

Anyways, you may need a degree in TSC to understand that last paragraph and all of the acronyms. Basically, we are praying that his heart tumors have shrunk, or at the very least, not grown anymore. My little man has enough to deal with as it is and this mama does too.

God bless us every one

Merry Christmas!

I'll post pictures later but I wanted to wish everyone a Merry Christmas. If yours is 1/2 as good as ours, then you are very lucky.

Last night we were up until 2 am putting together a train table and finishing his book shelf that we started before he was born. He went to bed very late for him because he took a late afternoon nap yesterday and we went out last night but was up at 7:30 this morning, bright and early, ready to see what Santa brought.

It has been a great day though. Round one has come and gone, we got a cruise on Lake Travis and an awesome gift card to Class Cinemas and a hard drive to back-up all the pictures. Not to mention we got accused of stealing my grandmother's car. And Jack of course cleaned up well too.

Next is round 2 when Jonathan's family comes over, and we have lots of left over alcohol from the early crowd so it should be fun! And of course, more presents!

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.

Back on the wagon

I'm so hesitant to take pictures now! I'm still in shock about the hard drive and clinging to 2 small hopes. 1st, Jonathan is going to try and recover some of the pictures off of the cards from the cameras. We'll see what happens. 2nd, I have a friend if Portland who has a guy who might be able to do something with it. We've had 3 professionals tell us that it is toast and there is no way we can get anything off of it, but I haven't quite given up yet.

So, I was debating about taking Jack to see Santa this year. Mostly because I didn't want to pay the $20 to do it. However my mom went on vacation and left me her credit card! It's fun spending someone elses money.

Last week we were at the mall and we rode the train. Lakeline Mall now has a little train that goes around. It's crazy expensive, $5 a person, but Jack LOVED it. He was running after it saying "choo choo tain". At one point he ran through the area where Santa was and no one was there visiting Santa so Jack stopped to tell Santa about the train. It was very cute and after that little encounter I figured he would do pretty well with him. Which of course he did.

One of the things we've been doing is getting Jack to drop a nap. It's been rough. He still wants the other nap. Either that or he goes to bed at night and sleeps for 2 hours and then wakes up wanting to play because he thinks that he just took his 2nd nap. So then he's up until midnight. I'm hoping we all survive this transition. He does fine with 2 naps, but then he sleeps for 4 hours during the day and wakes up early and we can't do anything socially. If he only takes 1 nap we can go to story time at the library, or swimming at the gym, or meet up with our playgroup. It needs to happen, but it's tough on all of us.

So in the mornings we need something to do. We have to get out of the house around 10 or he's laying on the floor with his blanket sucking his thumb. It's pathetic. Today was a trip to the mall to see Santa and it went well. We were the first ones there so we didn't have to wait and Jack had quite a bit to say to him. I have no idea what he was telling him, but he sure did chat a lot. Santa was very entertained. And he was a good Santa too. He had a real beard and let Jack tug on it. He was very friendly and just like what you think Santa should be.

Anyways, here are the pictures I took with my camera.


The one that I bought was goofy. He has one eye almost closed and he's sitting funny. But I'm not sure which of the 3 is the best. They are all a bit goofy.


He didn't sit still for long. Really it was about 2 seconds. This kid is a busy boy and is on the move. Constantly. All. The. Time.


This would have been cute had he actually been looking anywhere near the camera.


This was just cute. It was taken in the play area after our visit with Santa.

A good reason to have a blog

So Wednesday I went out to dinner with a friend. We had a great time but I got home late. I went to check my email before I went to bed and in the middle of it the whole computer just froze. It also sounded funny. I had to force a shut down and when I tried to re-start it, I got nothing.

To make a long story short the hard drive is dead and it is un-recoverable meaning all of my pictures from the last 10 months are gone. I have a few, very few in places like face book, walgreens.com (from having pictures printed) and here on the blog. None of the pictures are full sized, they are all much smaller, but at least I have something.

I'm missing his 1st birthday, baby George, our TS walk, my friend Rita's wedding, the list goes on and on.

I keep telling myself that being home with my baby, spending my days with him and him having his mama to care for him is much MUCH more important than having stuff. In this case the stuff being a large back-up hard drive to avoid things like this happening. Because those hard drives are about $300 and we have medical bills out the wazoo, and a crazy diet that is super expensive, and a child that is growing very quickly. I could work and we could have the money to buy things like a big hard drive, but then I would have pictures that someone else took and I would miss the experience of my baby. At the same time, I can't pretend that I'm not upset by it. I love taking pictures and this blows.

My daddy has already told me that he is getting us a time machine (back up hard drive from Apple) for Christmas so hopefully we'll avoid this in the future.

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

quick update

I'm working on a short video since Jack just turned 18 months old. Holy Cow, he's now closer to 2 than to 1. Makes me a little sad.

But I wanted to let everyone know what's going on with his heart. A bunch of cardiologist got together and talked about him. The general consensus was to wait 6 months and do another echo since the tumors aren't actually causing a problem right now and these things are SUPPOSED to shrink. Anyways, our guy wants to take another look in 3 months.

In the mean time, we have to watch for signs of distress. We are listening to his heart on a regular basis and we're supposed to call if it starts sounding different. We're also supposed to go in if we notice that he's sleeping a lot more, lethargic, pale, having trouble breathing, etc.

I'm glad that we don't have to do something drastic like chemotherapy right now but I also have mixed emotions about just waiting for something awful to happen.

Here are his latest dance moves:

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.

Toddlers are like that drunk college friend

Have you ever noticed that?

They are so much fun, they are always dancing around, doing something crazy.

They fall over and trip all the time, and they act like it's no big deal.

They talk a ton but don't make much sense and you say "that's great honey" even though you don't have a clue what they are talking about.

They can go from laughing to crying in under a second.

They will randomly get naked and run through the house.

They need your help putting them to bed.

They will randomly give you hugs in the middle of a conversation and tell you they love you.

If you take their drink away from them, they freak out.

They will talk to anybody, doesn't matter if they've never met before.

Your needs are completely none of their concern.

A younger cousin!

Jack now has a little boy cousin! George Henry Harris was born late Wednesday night and weighed 7 lbs 9 oz. He's perfect and cute and cuddly.

I headed down to be there with them but the little guy was in a rush and arrived just 20 minutes after they got to the hospital. But I got to go down the following day and do his first photo session as well as get in lots of snuggle time.

I forget how tiny they are when the are fresh.


Jack is expecting an additional younger cousin sometime in late December or early January.

Language Burst

I might at some point sit and blog about the craziness of the hospital. About how I completely lots it with a tech, how I got the doctor on the phone one night at 9 pm when they told us our scan was being pushed back, and about how he went into the hospital in ketosis on his regular diet when part of the reason for being there was to get him into ketosis under supervision. I also don't have a lot of free time because of the hours every night I spend preparing his food. But for now, I wanted to write about Jack talking!

I don't think most people would understand him and half the reason I understand him is because he does the sign with what he says! I can't even tell you how excited I am about it. I've been working with him for the last 6 months on signing and he's finally starting to pick up on them and mimic them.

He's been doing the sign for "more" for a while now. Then in the hospital he started doing the sign for bubbles and saying it too. It sounds more like "ubble" but when he does the sign and says it, it's pretty clear. He will even ask for them by doing the sign. Very cute.

The other thing he's been saying is "uh-oh" and even though it's very unclear and more of a noise than a sound he does it when he throws something on the floor. It was very cute in the hospital when we were down in prep area for his scan and he had a bucket of blocks and would throw them on the floor, say "uh-oh" and see how many nurses he could get to play his game. It's not so cute at the dinner table, more annoying.

And the last sign and word that he picked up is "all done". He will do the sign and day "ahh duu" or that's what it sounds like. I don't think anyone would recognize any of these as words but we're calling his first official word Bubbles and his little voice is so cute.

Into the hospital we go

We check in tomorrow morning at 7 AM. UUG.

I spent 4 hours cooking this afternoon but I think I finally have all of his food ready for the week. The good news about that is that I don't have to think about what to feed him, it's already ready.

He's done pretty well with the no nursing thing. He will still root around a bit and get upset when I don't give him any BUT he does accept it and will let me rock him. I'm very excited that he will let me rock him and snuggle him without nursing. I've been spending lots of time pumping, which sucks (pun intended) but Jack is worth it.

If you are the praying type, please pray that we get what we need from these tests, that he has enough seizure activity to actually do the tests, that they don't stick him too many times, and that we are out of there as quickly as possible. Don't pray for patience because we all know where that leads, just pray that it flies by.

This surgery evaluation and this diet are huge steps for us. And hopefully, one of them will be our saving grace and will stop his seizures.

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

At least he has my eyes

And that's about it. Just look at them!


Jonathan when he was a baby.

Dear Jack,

For almost two years now my body has kept you going. From the time you were just a few cells right on into toddler-hood, you have been a little leach living on me, and I say that in an enduring way. Let me tell you kid, pregnancy was hard. Some people love it and I am not one of those people. But the moment I saw you, you were worth it.

Then came the breast feeding, which has had it's up's and down's. Honestly, I was more worried about the breast feeding then I was about giving birth. I knew that I was leaving with a baby, one way or the other. I didn't know how exactly I was going to feed that baby.

One thing that you will come to know about me as you get older, is that I'm stubborn. I'm sure that will frustrate you at time, as it does me too, but that stubbornness got us through the rough patches of breast feeding. First there was the pain. "They" say that is only lasts a few days. Well, "they" were wrong. For me it lasted at least 6 weeks. Every time you would latch on I would hold my breath and cringe. I'm sure some of that had to do with the fact that you were slightly tongue tied and therefore I was bleeding, but still, it hurt.

Next came the phase where you had some strange issue. You would eat for a minute, then scream bloody murder. It lasted a good 3 months and was so upsetting to both of us. I just wanted to be able to feed my hungry baby and you my little love, just wanted to eat. To this day I still don't know what the heck was going on but eventually you outgrew it.

Then all hell broke loose and you stared having seizures and were put on steroids. At that point you started nursing every 2 hours around the clock. It was worse than having a newborn. When you have a newborn you expect that to last 2-4 weeks. It's brutal and painful but you spend the majority of the time snuggled in bed with a brand new little human to love and stare at. Those 2.5 months were filled with terror and worry and were some of my hardest times as a parent so far. The lack of sleep only magnified those feelings but through it all the two of us had that time together and when I was nursing you, everything was okay.

After you were off the steroids came the task of my body having to adjust to less of a demand for milk. Over the next few months I had 2 rounds of mastitis and over 15 clogged ducts. I also pumped enough milk to donate over 300 oz to the milk bank for other babies. I became a pro at unclogging the pipes. During this phase I considered cutting you off. I was always in pain, always attached to a pump, and just worn down by everything. But it was flu season and you had been through enough already in your short little life so I kept at it.

I guess between 9 and 10 months of age I finally put you on a nursing schedule. You were getting wiggly when we were nursing, you often times seemed un-interested and I kept getting those dang clogged ducts. It was the only solution I could come up with. Thankfully it worked great. I never denied you boob time but I only encouraged it 3 times a day, in the morning when you woke up, before your afternoon nap, and when you were going down in the evening. This has been the golden phase of nursing. After about a month of this I was able to stop pumping, thank God, and my body adjusted. I haven't had a clogged duct since and you have been nursing wonderfully during those times.

If it were completely up to me, I would just leave things as they are for a while. When I first got pregnant my goal was to nurse to one year. I contemplated giving up a few times before that mark but was very glad that I didn't. Then when a year came and everything was going so well I figured we'd go to 18 months, if you wanted to. The benefits of the anti-bodies you get from breast milk make it worth it. That plus it's going well and being cheaper than buying milk made it sound like a good plan.

My number one goal in nursing you was to provide the best possible food and nutrition I could. Part of that is doing what we need to do to get the seizures to stop. With that, we are starting you on a special diet to try to control them. It has about a 30% chance of working wonders and we owe it to you to try. So with that, as of today, I am no longer breast feeding you. And it kills me to do this. We have been reducing the sessions quickly over the last few weeks and it hasn't been easy. I keep telling myself that this is what is best for you. That we have to try everything before we do surgery and this is simply a part of that. One constellation, if there is one, is that you can have some breast milk mixed with heavy whipping cream which you seam to love. That means that I have to pump, again and I have discovered that my pump is going out. Great.

Pumping isn't fun. It's time consuming and doesn't feel good, but you are worth it. And if for some reason this diet doesn't work out mama will still have milk. So, if at that point, my precious baby boy, you would like to nurse some, it's all yours. Most people would just stay weaned after going through it once and you may not go back to it, but I want you to then you can. Know that I will always do everything I can to keep you as healthy as possible. What you need is my number 1 priority and it always will be.

So I'm sorry that I'm taking the boob away and I'm really sorry that I won't nurse you when you're all hooked up to the EEG in the hospital next week but I will always give you hugs and kisses and I'll hold you as much as you want.

Love,
Mama

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

New lay out

What do you think?

I know that I need to try and make the header a little bigger to fit across the top, but I'll work on that later.

It was just time for a change.

Things to do

I realize that list of things for me to do isn't exactly exciting, but it's helpful. We are starting the ketogenic diet when we go into the hospital on the 28th, both the docs agree that it needs to be tried, so that adds a whole lot more to do and organize before we go.

TS CLINIC RELATED
*Make list of questions for TS clinic.
*Done Get vaccine record.
*Laundry/Pack
*Travel food

HOSPITAL RELATED
*Figure out toys for the hospital.
*Buy a few new toys for the hospital?
*Partly Done Knit a hat to go over Jack's gauge helmet.
*Cook Jack's food for the hospital. (This isn't something I have to do but hospital food sucks and he's going to be on a super strict diet so I'd rather have yummy, organic, homemade food than frozen mushy hospital food.)
*Done Re-schedule his 2 appointments (ophthalmologist and pediatrician) that were scheduled the week we are in the hospital.
*Done Get another set or 2 of zippered pj's.

DIET RELATED
*Done Make list of question for the nutritionist.
*Partly Done Get supplies and containers for ketogenic diet.
*Get and read "the keto kid"

That's all the medical things I can think of right now. I'm sure I'll think of more as the week progresses.

bringin' him up right

Some of my favorite memories from my childhood are from spending time on Lake Travis. That being said, there is no doubt that my children will likely spend as much time as possible there too.

Right now the lake is full, the weather is hot but not too hot, and the water temp is perfect!

This was the look that he had on his face at first. He just had no idea what to think or what was going on.


But once he adjusted to the whole idea, he had a blast.


And loved watching the water.


Of course he wanted to be in the water. He wasn't a huge fan of the life jacket but did better with it than most babies do. It was difficult for us to hold him in the water as we were trying to float on cousins, but the swim platform was a big hit. The water would come up through it and he though that was great. He also though it was really funny that daddy was swimming.


While we were out we went to a floating restaurant and he really liked watching all the fish!


He had a little snooze on the way back to the marina. And napping on the boat is the best. And he slept really well last night.

Just an update

I have pictures I need to pull off my camera and a news letter to write, but I simply don't have the energy right now. So, you get this pathetic excuse of an update. But hey, at least it's a post.

So we saw the neurosurgeon on Tuesday, the genetic doc on Thursday, and we see our regular neuro on Monday. They all share the same office and nurses so we've seen them all a lot this past week. Not to mention the countless phone updates they get from us.

First, the surgeon. All things considered, it went well. We really liked the guy. He was very personable, spent plenty of time with us, and has even done some research in TS and just had a paper come out. Jack really liked him too. Although he prefers flirting with the nurses. We are being checked into the hospital on the 28th to do some tests to see if Jack is a surgical candidate. One of the nurses, Tiffany, got us in quickly. There is usually a 4 month wait but she saw we were coming in and she worked her magic for us.

Jack will be hooked up the an EEG for 3-5 days. And if that hell isn't bad enough they will also be doing a SPECT scan. We may also have to drive to Houston to get a MEG scan, but that would be later. The longest we've ever been hooked up is for 2 days, and that was before he was on the verge of walking.

We will figure out where to go from there. We might start the Ketogenic Diet then, which is a HUGE lifestyle change for all of us. Basically, no eating anything that isn't prepared in our kitchen. ANYTHING. Everything has to be measured out to the gram and it's so strict that he can't even have tylenol because of the sweeteners and there are only certain kinds of soaps and sunscreen he can use. It's bizarre. I don't know how breast feeding plays into it, that's one of my big questions. It's basically a no carb diet, meaning only meats and very few veggies. It's extremely challenging, but it has about a 30% success rate. Ideally he would be on the diet for about 2-3 years and then weaned off of it. The problem with Jack (and TS kids) is that the brain damage is still there so weaning the diet might cause the seizures to come back.

And Jack has a higher success rate to fully recover from surgery if we do it before he's 2. The surgery has about a 60-80% chance of stopping the seizures for good. But the risks... lets just say that they may have to put me under too while he's in surgery.

So, we are doing a med change. Again. We had 2 seizure free days this week, which was the most we've had in months. But then today he had 9. Each day seems to be a total crap shoot.

Jack remains the cutest, sweetest, most lovable baby ever. He is tall, now 33 inches and almost walking. Yesterday he took 4 steps. He gladly walks holding onto someone hands now, and I didn't think he would ever do that and he continues to love to push his pushing toys. He has also started signing! He knows the sign for "more" and uses it with gusto. It has cut down on the fussing for more food. We're working on other signs too, he just hasn't started doing them yet. And he loves it when people clap for him. It's super cute.

Ok, that's all for now. He is in bed and these days we don't know if he's going to be up at 5:30 or sleep until 8.

We went down to Port A for the holiday weekend to start a new family tradition. We were there with my dad and his girlfriend Mary, my brother, sister-in-law, and toddler Grace. It was a good time, but the mosquitoes were hell. I tried to take Jack on a morning walk and got 63 bites. I'm still itching like crazy. Jack had a good time at the beach. But on the second day a guy pulled 3 sharks out of the water right where we were swimming. They were small and they generally stay away from people, but there were a ton of people there and yet he pulled 3 out on one morning.

That look on my face is, don't get that thing any closer to my child. And Jack is just ready for a nap.


Jack wasn't a huge fan of the sand, but he loved swimming in the ocean or maybe I should say the shark infested waters. But he had a blast. He was not a fan of the sand though. He kept wanting to chew on all the sand toys but didn't like the sand in his mouth. And he would rub his eyes and get sand in them, it was all a big mess.



These 2 had a good time hanging out together.


And Jack LOVES his cousin Grace. She was upset and he was trying to comfort her. He would try and make her laugh, he would look at her face and try to help her, and he would hug her. It was adorable.


And then he tackled her. He is a boy after all.


We came home a day early because he wasn't sleeping well and was having a ton of seizures. I don't think Jonathan and I could have taken another night like that. He did great in the car on the way home though, which was awesome.

And speaking of seizures, we have a surgical consult tomorrow. Because the meds aren't working they are talking about cutting out the parts of Jack's brain that are causing the seizures. How the hell they are going to do that without putting me under too is another question.