We are Here, We are Here, We are HERE!

Sorry for the Horton Hears a Who reference in the title... We've been watching a lot of Grinch and Horton lately. It's been a while so I thought I'd catch everyone up. Since our disaster of an illness, we've been managing. Cavan isn't back to his normal self recently. He is having major gagging issues when it comes to eating. I literally have to force feed him most meals. It kind of looks like this....

Me: Cavan, you have to eat. You can't go to school without eating.

Cavan: I don't want to eat!! (Insert thrashing, kicking and gagging)

Me: (trying really hard not to cry or strangle him or both) okay! Let's play a game...

And this is when I have to come up with a zillion different ways for him to eat. The iPad normally works. He plays and I sneak bites in when he doesn't realize it. But God forbid if he does notice! He gags it all up. I don't know what the deal is. But it's really annoying to be honest. My immediate thought is- I ain't got time for this shit. 

Thanksgiving was wonderful! We had it at our house. I don't cook- my mom does! It just makes it easy to watch what Cavan is eating when he is under our roof. I let him pick his own meal. He got turkey, celery, strawberries and corn. He ate everything on his plate! (Don't be fooled it took about 40 minutes for him to get everything down). But it was great and I was grateful. 

  With Christmas around the corner I am doing a lot of looking back on where we were last year. He is a completely different kid. He is aware and more- alive- if that makes any sense? He is into it and I feel like a lot more with it in understanding what is going on. He is excited and mindful of how he is behaving. Just all around better. He has his moments. But I was looking back at some videos of him from last year and holy hell! How did we put up with that for so long?? He was all meds. And it was obvious. Little by little we are seeing Cavan. Sweet, loving Cavan that fills people's buckets (a saying that he does good for others) and brings joy to others. So yeah, I have to force feed him most meals. That'll pass. I hope! As long as I continue to get this Cavan. The one we have all been waiting to meet again!

Damn Croup

So we are home now. Almost four hours at the hospital and I am going to drop. The doctor decided that Cavan needed steroids to open up his airways to help him breathe. So common and any other kid of mine it wouldn't have been a question. I explained to the doctor and the nurse about the keto diet. I told them that liquid meds contained a lot of carbohydrates and asked them if it was medically necessary for him to be getting it. The first doctor was a bit arrogant and had a huge "this is what needs to be done. This is what I need to give him." Okay great, but is it absolutely necessary? Because see, I have a kid who you give carbs to And he *could* break Into seizure overload. Like i said, he was arrogant and said, "I'll get the ER pediatrician in here." Perfect. She was awesome! She said she would really listen to him at first and assess whether or not he needed the treatment. Her response was "I have to give this to him. I can't have him walk away and go into respiratory distress. His airways are pretty closed up." And she was concerned. And so I listened and we came to a compromise that he would get the steroid but not in liquid form. He got it in the tablet form which has lower carbs. We syringed it to him with water and an hour later we took a very cracked up kid (from the steroid) home to sleep. Ha! I said sleep! He totally didn't sleep. We got home close to 5 AM. He's been sleeping on and off today. We went to Princeton Nassau Pediatrics for our follow up. Dr. Pellegrino decided it would be in cavans best interest for another dose of steroids. I agreed with him. He was still barking and wheezing. We are home now and i feel like he is already doing better. We are just watching him for seizure break throughs. Hoping tonight will be a quiet bark-free night (for ALL of our kids!) 

At the ER

So we've dealt with croup a zillion times. Maybe a trillion times. It's a bit different when you have a keto kid. You can't just run out into the car with your sick child and get to the hospital. No- it's more like do I have the meds? Yes. Do I have the syringes of oil? Yea. Do I have a keto friendly meal in case we are there more than four hours? Um..... I learned my lesson. Time to get my shit together. Calculating meals at 1:00 AM is not ideal. I also had to make sure to pack the list of can't haves when it comes to meds. But we are here. And we are waiting. 

Challenge, Accepted

So, we decided to take the kids to Sesame Place today.  Uncle Scott came over and we all headed to the park around 2:30.  If you don't know about Sesame, they have Trick or Treating this month leading up to Halloween.  I purchased many many little trinkets for Cavan for Halloween.  I took them with me and Kenyon dropped me off at the gate before he parked.  I spoke to the manager beforehand and told him about Cavan and how he is on the magic diet and how candy and juice boxes were a no go for him.  I showed him my goods (that sounded so inappropriate!) and explained what I wanted to do.  With the managers approval, I spent the next ten minutes literally running around the park explaining Cavan's situation to each person manning the station.  I handed the trinket to them and asked them to give it to Cavan instead of what they had (chips, cheese puffs, juice etc). And then I got the text that they were in the park and ready to go!
  I met up with them.  Kenyon and Uncle Scott informed me they did not start trick or treating yet.  And so we began.  Maeve went first.. Then Cara.  Then I walked up with Cavan.  The boy recognized me right away and looked right at Cavan and said "here you go buddy! This is for you." And he handed him the trinket I supplied.

Cavan lost.his.mind.

Picture screaming, kicking legs, falls to the ground, screaming even louder, sobbing.  It broke my heart.  Ugh! It's just not fair.  I scooped him up and tried my hardest to explain to him why they gave him that, and how they must know about his magic diet etc.  All he was screaming though was that he wanted what the other kids had.  And the tears welled up in MY eyes.  Because you know what? He's freaking right!! That's all I want for him too! But I couldn't go there.  So I calmly said to him that if trick or treating made him THAT sad that we could skip it and just go on rides.  And we did slides for a bit and did Abby Cadabby's maze.  And then came another trick or treating station and Maeve says to him, come on buddy! Let's see what prize they have for you! And for some reason, all was good with the world.  He ran up to them and got his trinket.  And he was happy with it (it also happened to be a really annoyingly cool mouth whistle).  It's almost like he had to go through that major break down and be a kid.  And then get over it.  And then have fun.  And that's exactly what we did.  We went on rides and got more prizes.

  What astonished me the most was the fact that we even ate at Elmo's eatery.  We all got chicken fingers and French fries.  And Cavan sat there and had his weighed out salami, cheese, syringe of oil, strawberries and six goldfish.  He didn't care because he was drinking out of the same cup and eating off the same plate (which I paid extra for, but whatevs!).  

Today was definitely a learning experience.  For all of us.  But, we accepted the challenge and kicked it's ass.

Ugh. A scare.

So, this whole -my kid is on a special diet  thing- kills me when normal things happen. Today we had a great morning. He ate all of his breakfast, snack, and lunch. We even had a play date this morning with our friends Gavin and Mason! And then he turned. And not for the better. He started complaining about his stomach. So I'm like, okay... He ate bacon, apples, and chips for lunch with a side of oil. Who wouldn't have a stomach ache? So I watched him. And he did that gagging thing. Remember that one from the hospital? Gagging for like twenty minutes straight. He lay down on my floor and then boom, he passed out. Couldn't even keep his eyes open. It reminded me so much of when he was in the hospital and his bicarb was low. I put a call into the neurologist on call. I was panicking. Thinking his numbers must have dropped. I mean, what else could it be? When I got in touch with Dr. So and So, he told me to try and wake him up. If he didn't really get up, he wanted us to get to an ER. So I totally wasn't panicking at all when I was shaking Cavan awake. (I hope you sense my sarcasm). But no need to worry, he woke up. He was groggy and refused to drink (which always worries me). But he was okay. I don't know what it was. I don't know what happened. It could have been heartburn for all I know. But him being on this diet just makes things more complicated. Can you imagine what will happen when this boy gets the stomach bug?! Yikes. 

He did wake up with a runny nose and boogers everywhere. Yum. But at least we aren't in a hospital room. 

Follow Up appointment (2 weeks)

We went to CHOP last week for cavans follow up. All of his numbers looked really really good. He has a good ketone level, sugars look good, pee all checks out. Nurse Claire asked how he was doing with seizures- all good there too! He still hasn't had any. They decided to keep him at the ratio that he has been- 2.5:1 ratio. Woohooooo!! That is what I was hoping to hear. They have noticed that he has lost a bit of weight since starting the diet (1.5lbs in less than two weeks). They increased his snack calorie count to try and beef him up a bit. When I met with the dietitian we realized that I was making his afternoon snack incorrectly and he was already getting 100 extra calories and he was STILL losing weight! So they had some tweaking to do for my very energetic little boy. He seems to be doing well on the diet. They asked if he was doing better mentally on the diet. I was able to say yes. He listens more at soccer, he stood at the aquarium window for more than ten minutes watching the fish! For the first time I took a step back and thought, holy shit. He IS getting better. Slowly, but it's happening. 

  We had our first encounter with someone trying to give him a treat on the playground. I felt like I was in slow motion watching it happen. Then Cavan turned to me (totally knowing that he couldn't have it) and asked me if it was ok. I said, "who is he ONLY person allowed to make your food?" And he said, "my mommy." To which I replied, "that's right. And that's not on your magic diet. Now go play." And off he went! No tears. Nothing! I was going to cry I was so happy! He is slowly getting it. We can all eat together at the table for dinner and he even sat there as the other kids ate chicken nuggets in front of him. I have one strong kid I tell you. And I am proud to call him mine. 

Silly boy at the appointment after getting his stickers.

The girls watching Cavan weigh his own food!

He loves cutting now! OT has been working hard with this I am sure. He always has his "birdie fingers" ready to go!

Our First Real Outing on the Diet

I must say, it went a lot better than expected. We headed to the Camden Aquarium. Kenyon and I packed all of the kids lunches. I made sure to pack very similar things so there would be no fighting with Cavan. He was pretty hungry around 11:30 and we had to hold him out. One time walking by the Sharks he saw a boy eating a bag of popcorn and he started whining about food. He didn't take well to the huge syringe of oil he had to drink. I can only imagine what people were thinking when I was holding his arms down while shoving a syringe in his mouth. But he was able to have salami, apples, cheese and a bit of carrots. He did well! We were very impressed with all of our kids!! 

Two Weeks In

A huge thank you to WAWA for supplying Cavan his cream for this diet! 

So we are now approaching two weeks on this diet and I am thinking about everything we have learned and how far we have all come.  I have learned so much with Cavan being on this diet.  I'm not just talking about how to make his food.  I have learned organizational skills, time management, patience and quick thinking.  I always thought I never had any time to do anything in the past. I had four kids, a busy lifestyle etc.  now I chuckle to myself thinking, oh my God I had so much time and I never knew it.  I think we all think that at some point in our life though.  But every day as I live my life with this crazy new schedule, I now know I used to have so much time!
  Every moment is accounted for now.  I am making food, weighing food, tasting food (because let's be honest, some of this stuff I am making is gross and I have to throw it out and start from scratch). In the afternoon while the kids are napping I focus on meal planning.  The following day has to get done  if I am going to make Cavan's dinner in time.  The calculations suck.  It's not terribly hard but it requires thought.  And if I haven't had my third cup of coffee, the math comes out wrong.  By the time Cavan gets home from school, dinner for him is made and weighed and on his plate ready to be heated. We have more important things to do-  like play outside for a bit!
  Cavan has been doing awesome in school.  He had some adjustments that needed to be made but he is enjoying it.  He gets speech therapy, occupational therapy and he also has a para with him to monitor his seizures. There are only like five kids in his class and three or more teachers in the room at one time.  He loves it and tells me all about how he fills his bucket everyday.  I couldn't ask for better teachers, nurses and staff! They communicate with me everyday and some times several times during the day.  I know I am high maintenance as a parent and a former educator but they handle me well.
Cavan has not had a seizure since the hospital.  Ssshhhh don't say it out loud! And knock on wood for me! I don't really put much into that though since he was pretty controlled with the meds before going into the hospital.  We will see what happens when they start pulling him off the meds around christmas time.
We have been seeing other improvements as well.  He is no longer drooling.  Now, if you knew Cavan, you would know that wherever he went, a puddle if drool was under his chin! It is completely and totally gone.  Weird.  Magical? I don't know what to call it but it's a good thing.  He is also a lot less aggressive with his behavior.  Don't get me wrong, he has his moments.  But overall, he is not going after Ronan as much and he is playing very well with both cara and Maeve.  This was a big thing for me since I could tell other kids had issues with his behavior.  So it makes me happy to know he is doing well with that.  His bowel movements have been pretty rough.  He poops water (I am guessing from the oil). A lot of times last week he didn't even know he was going! So we are back to pull ups.  But for this first time ever (and the second time too!!) he told me he had to poop. Be went and sat on the toilet and actually went.  Yes, he is four and a half and no he is not potty trained yet.  But when he has seizures that set him back in the potty training world, that shit happens (hahaha, see what I did there??). But last night that changed and we were so proud of him!!
  So as you can see we are having improvements.  I am just so anxious to really get ahead, get him off the meds and see how he does then.  All in time I guess.
 As far as the diet goes, he is getting better.  He is finding his favorites meals.  I am able to go back now and look at what he had last week.  That helps a lot with time management.  It just sucks when I make a meal and he decides he doesn't want it.  Because that can't happen.  He has to eat and he has to eat all of his food.  So I try and stick to things I know he will like.  He still has temper tantrums when he wants something that he just can't have (think yummy waffles in the morning). But he tells me to check my list or ask nurse Claire.  The meds are really rough.  He just takes so many syringes a day and that has become a real issue with him.  He takes a little syringe of his Onfi.  It's small but he hates it.  He takes his Cytra which he actually likes.  That one is for the acid in his blood.  And he takes lamotrigine pills everyday.  And then he usually has a syringe of oil with his meal.  He is a trooper but it's just gross for him and sometimes it's a huge -hold me down and fight- kind of a situation.
  We go back to CHOP this Wednesday.  I am praying that they don't change his radio.  We are in such a good place now with his meals and getting into a good routine.  If they change his ratio it's like starting back at square one.  But hey, we've come this far, we can manage.
 Cavan is the strongest kid I know.  He puts up with so much poking and prodding and testing his pee and syringe after syringe of oil and meds.  He is way stronger than I could ever be.  And he does it all with his seriously cute smile and giggle. Thanks for reading and make sure to check back this week after his appointment!

So, now what?

The most common question is....what happens next?
   I have come home with a million pieces of paper.  CHOP donators were kind enough to give me a binder to put all of these papers in.  Yet they remain exactly where I keep them, on the kitchen counter.  I use two main documents when calculating Cavan's meal plan.  The first is the Keto Manual I got way back when.  Seriously, if I ever lose it, I'll be screwed.  The second is the list of exchanges that the dietitians created for Cavan.  They calculated everything down to the midday snacks and the before bedtime snacks for me.
  I am documenting everything.  And I mean EVERYTHING!  I have to document his blood ketones, his blood glucose, his urine ketones, his urine PH, his blood in is urine, his bowel movements, his eating percentage for every meal, his seizure activity, his hunger level, and there is probably more but my brain hurts just thinking about it.  Why am I doing this? It helps his Keto team decide where to go next.
 At the two week meeting that we will have on October 7, the Keto team will look at what and how he is eating to decide if we are going to change his ratio.  Right now Cavan is at a 2.5:1 diet.  This means he eats two and a half fats to every carb/protein.  The Keto team would like to see Cavan get to 4:1. His body couldn't handle that in the beginning so we have started here.  They will more than likely gradually increase as time goes on.
  Cavan is still on his meds.  The Keto team wants to give him at least three months of being on the diet before they even think about weaning him off.  They want to make sure his numbers are stable before messing with his brain.  Happy to say that Cavan has been seizure free since coming home! It's so hard to say if that's the diet though because he was seizure free going into the hospital.  I guess we will see what happens when they start weaning the meds.
  So how are we adjusting you are probably wondering...
 I am freaking exhausted.  The kids go to bed around 7/7:30 and from 8-10 PM I am in the kitchen.  I have to meal plan (which is so much math!!!) and then I try and prep for the next day.  If I have enough time, I'll cook in advance.  So tonight I made three days worth of pancakes for breakfast.  You have to understand.  There's shit in these recipes that I have never even heard of! I am so not a baker.  So when the recipe calls for whipping eggs into stiff peaks, I needed to google what the hell stiff  peaks were first.  So things have taken a bit of time.  But I'm trying.  And I'm trying to find things that Cavan would like.  I also try to find things that are similar to what we are eating so it doesn't make him sad.
  How is he doing with eating?
He's a rockstar.  Seriously.  What kid takes three different meds, eats a breakfast of fat and very little carb and then bam! Takes about 16 grams of oil.  It is so freaking gross.  He has labeled it in his mind.  He doesn't mind his bicitra med.  That's "the good one." The oil is okay because he likes to watch the bubble float to the top of the syringe.  The cream he just can't stomach.  Our dietitian said that was okay because the oil is a better fat anyway.  It's healthier.
  How is Cavan mentally?
We have great moments and we have really really bad moments.  Like when he goes into my pantry and cries for like a half an hour because he wants goldfish.  And he can have like two (no joke) and only at snack time.  Not when he wants.  Or when he goes into the fridge and gets a yo baby squeezy and I have to tell him that it's not good for his brain.  He is getting smarter and saying things like, mommy can you check your list for me? Or maybe can I have that at snack time? Little things and statements like that give me hope.  It's not easy and it'll be a long road but if we can remain seizure free when we come off the meds, that's all I can ask for!

Day SIX

This morning was such a different experience.  We woke up at five am to the nurse coming in to check his blood glucose.  We both exhaled deeply when it showed the number 69.  She went to draw blood when she realized that the IV was not hooked up (again). So they came out again to give him another blood draw (this was number seven!).  He ate a decent breakfast of bacon and I tried my hardest to get him to eat the strawberries and whip cream.  He just wouldn't do it.  I gave him a syringe of olive oil which he DESPISED but gagged down. His ketone level was at 7.1 so we were just waiting on the bicarbonate level. It was 18 yesterday and today came back at a whopping 20!  So like all discharges from the hospital, they told me we could go five hours and eighty-five treasure hunts later.

  We got home and Cavan actually cried at the sight of his siblings.  They were hugs and tears and then they all ran outside to play.  Dinner was, um, rough to say the least.  A wonderful

 Friend made dinner for us but Cavan had a hard time eating his.  Then he went into the pantry and wanted the big box of gold fish.  There is a lot of change that needs to take place in order for him not to be so tempted.  But I made him a kick ass snack of eggs and strawberries! The eggs were filled with mayo and cream and he gobbled them up. I whipped up a serving of pancakes for an emergency and now I am beat.  His numbers tonight were 7.1 for ketones (awesome) and 80 for glucose (double awesome).  I'll probably check him in the middle of the night because I am just scared.  At least for a while.  I'll be posting some yummy pics of his foods and updates periodically now. Here's to hoping for no more breakdowns about goldfish or cupcakes or ice cream! 

And please, please DONT FEED MY KETO KID! Thanks!

DAY FIVE, Part Two

So the afternoon was so much better!! We went to the Seashore Garden to play. He was happy and playing! We had treasure hunts all over the building. We went outside and inside and he had so much fun. You could totally tell when he was getting tired though. And he is freaking smart too. Kenyon went to get coffee and he said, mommy isn't that where they had muffins? I said yes, but that's not part of your magic diet. He seemed ok with it but only because we were having pizza! 

  We get back and we had to give him

Meds. We still have to hold him down but at least he is actually drinking them and not throwing them up or spitting them out. And then came time for pizza. He devoured all of it!! I need to make a million pizzas when I get home and freeze them. 

  We went on more treasure hunts and played and he was so excited when he got his prizes for drinking meds. He wants to go home so badly. They said if he can eat a decent meal tomorrow and his numbers look good, then we are out of here! So pray for his glucose level not to drop like crazy tonight. And for us to go home safely tomorrow. Because as much as I love the Pope, I don't want to be here next week to see him! 

Eating his exchange of carbs from dinner

(About 12 Cheerios)

Here's our Cavan!

Ice cream, he ate four out of five of them!

Day FIVE (Part One)

I am doing a two part update on Cavan. This morning has not been a good one. He woke up with his blood sugar very very low at 35. The lowest it should get on this diet is 46. They gave him an emergency carb exchange of juice to bring it up. After a half an hour it went to 51. They were satisfied with that but they were still concerned with him not eating or drinking. He needed an IV. His acid was still extremely high. Checking out they want him to have an acid (bicarbonate) level of 20. Cavans was 13. He smells like vinegar is pouring out of his pores. He threw up his meds two time again. His blood showed that he was still in ketosis mostly because he was starving himself. I went to class to make pizza, pancakes and more of those ice cream balls! He was supposed to be getting an IV with Kenyon there. When I got back, he had no IV. They stuck him three times and he was screaming and they couldn't get a blood draw. So they let it be. When I got back, Kenyon and I calmed him down and she got it first try! They gave him the fluids and the bicarbonate meds and within an hour he was eating and drinking. We went on a treasure hunt to find coins all over the boardwalk. 

He finished all of his pancakes but not the cream. It's a start!! 

Melissa and Mike are taking Paige home today. It's bittersweet because they have become such good friends. And I am so jealous that they get to go. But I am also super happy for them. They have become such good friends. 

He is resting now. Still smells awful. Waiting to see what tonight brings.

Day FOUR

Okay. This day has two parts. I'll write about them as AM and PM.

AM 

I awoke to Cavan gagging again. He was gagging all through the night. I was up every hour on the hour and watched him as he slept.  When he got up he was lethargic. He was cranky. And he refused to eat. But whats worse is that he wouldn't drink. And THATS a problem. So it came time for meds. The most important med at this point is to get his bicitra (I am probably killing the name). That is the one that he needs to get to lower the acid in his blood. So I was all smart and thought, I am so going to impress Kenyon and give it to him before he gets here. And I am going to do it first so he will get better faster. So I cradle him. I lock his arms and shove the syringe down his throat. He drinks and screams and gags. But he finished all of it. BOO-YA! And then he looks at me and throws up all over me, himself and the floor. Thank God for Melissa (remember my awesome roommate?) because she grabbed blankets and a bucket to help. He passed out hard after that. The nurse came in and we discussed with Nurse Claire (she's the keto goddess) what we should do. He wasn't responding very well and he hadn't eaten in a day. So we decided on an IV of fluids with the medicine he needed mixed in. He fell asleep on and off for the whole Morning. Two hours later his IV was done and he was smiley but still not eating. I was at a loss. He was still lethargic and I was very worried that they were going to start the we can't let him go home conversation.  

PM

At our class in the afternoon we made an egg soufflé. It was so good!! We tried it. We also made these creamsicle candies. They had cream cheese and jello mix and fresh strawberries in them. I was very hopeful. We got back and I learned from Kenyon that all Cavan did was sleep and he ate nothing. I had the soufflé in my hand. My nurse geniusely suggested that I cut a hole in the soufflé and offer it up as a donut. He completely loved it... Until he took a bite. We got six bites from him. I personally thought that was a success! I could tell he wanted more but did not want that donut. So me, the nurse and Kenyon took a trip down to the fridge to grab those ice cream balls. We called the girls on FaceTime (daddy's freaking brilliant idea). He showed the girls his ice cream balls and gobbled up one, then two, then three- four-five and then he looked like he was going to vomit! He didn't.  But man did my kid change!!! We walked through the hall (which he calls the Boardwalk) and he was like, "hi everyone! I eat my magic diet!" And they all started clapping and cheering and whistling! And this time I cried but for a good reason. Then his meds came. He took them all. I still had to hold him down and I still had to force them in but man was it easier knowing he got a little bit better. He got very tired and a bit lethargic after dinner. His blood sugars look good though. He did need another IV because he had a bit of a high heart rate. After it was done though his heart rate was normal. He didn't eat anything else except an exchange of carbs. Which means he got to eat a half of a saltine-just to give you an idea of his carb allowance. He will get another IV bicitric dose which will hopefully boost him again to allow him to eat again. 

So how are his seizures? 

He had four seizures yesterday. He had two seizures today. It will vary until the diet is stable and his body can handle the diet. 

It was a roller coaster kind of day but man, I could totally see the light! Let's hope we continue. 

Oh one more thing, I see you commenting. I see you messaging me. I may not have to write back but I sure appreciate the love! It seriously brightens some of my darkest moments during my day. So, thank you. 

Day THREE

Today was awful. Like I don't even know if I can talk about it because I might cry kind of awful. I should have known when he woke up in the middle of the night gagging. He didn't puke but he gagged in his sleep for most of the night. Then they woke him up at 5:30 to give him a new IV (my little darling knocked his out). He was up after that. He spent most of his morning gagging and screaming. Then came the meds. Oh my god the meds. He didn't want to take them anymore and so I learned how to hold him down with my forearm and shove the meds down his throat. 

  The nurse came in and told me that he has acidosis. Basically, there is acid in his blood (not good but totally common!). So he now has to take a new med to control that. He hates it. So, yeah. There's that. 

  Then surprise! We overbooked our rooms. They had to move us down the hall into a room with Melissa (my keto friend!) and her baby Paige (Ronans age). We got settled in and it was a bit tight and Cavan was losing his mind. 

  So mealtime came and there was a ton of 'Cavan, please eat.' Insert screaming here. He hasn't eaten all day. When the new meds kick in for the acid, he will supposedly eat again. His blood glucose is a bit low so it's important he eats his carb. But he isn't eating. Just.screaming.  So when it came time for class, I ran the hell out of that room. I learned all about what to do if Cavan gets sick on the diet- If he has fevers or the stomach bug etc. They gave us a handy medicine guide on what they can and cannot have. I'll have to go over some of it with my pediatrician (Pete- that was your warning, lol). But we all know the Peturas never get sick so I don't need to worry (HA!!) 

 After class I was back just in time to fight him again. Luckily uncle Scott was here to help! Thanks uncle Scott.  He ate nothing. All he did was tell us he didn't want to eat. He kept screaming for donuts and cupcakes and ice cream (no joke- screaming those words) And when it came to med time, it just got worse. This is normal they said and it's only because of the acid they said. All I know is that Cavan looked me right in the eye and said, "I don't want you. I want a new mommy." And it broke.my.heart. Oh and you better believe that I asked him the question again just to make sure I heard right. And I did. So it was fitting that we saw the social worker the second session.  

There I find out that Cavan was the only kid who had acidosis. He was the only kid not eating. And they told me tomorrow he just might be going to a ratio of 3:1 instead of increasing it to the desired 4:1. I cried a lot today. But Kenyon and Scott got him to eat his whipped cream and they played with him at the "park" at the seashore garden. So there were positives. I just didn't feel as though I got to see any. Not bitching or whining about it- just sad. 

  So evening we got to go take a picture of his bones. It was super quick and super easy. So when we got back to the room, we were told we had to move again back to the room we came from. No, I am not freaking kidding you. So we did. By the time we got settled it was med time again. I was ready to forearm him but Kenyon and I have learned how to cradle him in our arms and force feed him. So Cavan was able to eat hot dog, a pat of butter, and one saltine for dinner!! That is a huge success in my opinion. We didn't get the heavy cream in or the mayo but because he still has acid in his blood that's ok. His ketones are high so that is why he doesn't want to eat. He fell asleep at 6:00 and woke up at eight by a nurse putting a suppository in his ass. He still hasn't pooped and now it is ten o'clock. We are finally going to sleep hoping and praying that tomorrow will be a better day. 

Here's breakfast from today:

And here is what made me smile at night when I had enough

Day TWO

Holy shit. Today was a crazy informational day. I don't even know where to begin.  Cavan woke up and had a kick ass breakfast of bacon, eggs, applesauce, oil (we mixed that into the applesauce) and heavy cream. He had ketchup and mayonnaise too. He devoured every.last.bite. The mayo had some coaxing involved but I just told him it was white ketchup and down the hatch it went! Morning consisted of me meeting with Nurse Claire who explained how to record everything we are doing. I will betesting  his urine everyday. I am looking to make sure his blood is working towards ketosis. I am checking to make sure his glucose level is stable (not too low is super important). I will be checking his PH level as well. I have already "tested out" all of that already and have done it three times. Cavan thinks it's hilarious too because I let him pee right on the stick!

  Lunch was another win. He had chicken breast, cheddar cheese, applesauce, oil, heavy cream (for his milk), mayo. Again, he loved all of it (well minus the cream) and ate it up. The heavy cream he showed a huge dislike for. I had to spoon feed it to him which is NOT going to fly come school (right Ms. Cartaino?!) Need to think of a better way.

  Afternoon class was a trip down elementary school lane. Holy math class! So follow this if you can, Cavan gets exchanges of protein, fat and carbs based on his weight and calorie intake. Obviously, fats are huge, protein and carbs small. Every food item has a gram number associated with it. Take cavans exchange number and multiply it to the food's gram number and voila! You have cavans meal number in grams. Sounds simple until some proteins have fats and then you have to subtract from the fat lists because it's already in the protein. Don't worry- I'll never ask you to make cavans meal! And please no one ever feed him! Now you know there is a HUGE process in finding out what he 

CAN eat. 

  So after our heads were swimming but we think we all got it, we got to make tomorrow's meal! We made a delicious Mac and cheese. We even got to try it and besides the fact that it was super heavy, it was really good. 

We got back to the room right in time for dinner. Cavan was pretty hungry. He was weepy and I was stressed out. Kenyon and I were snappy and Cavan literally grabbed the hot dog right off his plate. I got it in time-thank god! So for dinner he had hot dog, applesauce, corn, butter chunks, and we whipped the cream and mixed in Davincis chocolate syrup. He ate every morsel of dinner! 

The nurse came in to prick his finger and show me how it's done. He had a glucose level of 74 (ok) and ATTENTION everybody!!!! He HIT KETOSIS already! This means his body is now feeding of he fats instead of carbs! Huge! I kind of expected balloons to fall from the sky but they totally didn't. 

  Nighttime snack was ROUGH. It was at 8. If you know me, you know my kids are asleep by 8!  He had to eat three carrots, a pat of butter, five large spoonfuls of cream cheese, and drink about an ounce and a half of cream. Brutal. I was pretty much force feeding him. And now it is 9 and he is stil not asleep. I am okay and besides being stressed at times, am hanging in. The nurse said tomorrow is going to be rough. Kenyon will bare the brunt of it since I will be in class. He has been amazing and we finally found a place that Cavan will hang out tomorrow. Thank god for someone telling us about it! 

If you got through all of this, thanks for sharing our journey with us! And thank you for all of the love and prayers. Keep them coming! Tomorrow will be hard! 

Day ONE

We are here! We didn't get off to a very good start. We got halfway to Philadelphia just to realize that we forgot his meds at home. We turned around and drove forty minutes home just to come back again. I thought I was going to kill Kenyon (even though he had nothing to do with it, he was easy to blame). 

  We got to CHOP and it took about thirty five minutes to check in and get settled. We ran into our friend Melissa who will be going through the program with her daughter Paige. We met at keto class and decided to come together for support! 

  After looking around and playing in the playroom, we met with our dietician, Sue who gave us the meal schedule for the week. Cavan will be starting tomorrow morning in a ratio of 2:1. Bacon, eggs, and oil and cream are on the menu for breakfast! Bacon and eggs won't be hard but oil and heavy cream? Ummm....

  We are waiting for the IV team to come in and give him his IV. It's 7:34 and he is already in bed, Jammies on- watching Fresh Beat Band of Spies on the iPad. 

  Overall, Cavan seems okay. Happy. He knows we are here for his Magic Diet. We have read him the book, Gordy and the Magic Diet enough times for him to know there is a monster inside of him (epilepsy) and the diet will make it go away.  

  8:00 now and IV team just left. Cavan is awesome and didn't flinch at all. He just said, "what you doin'?" And "you hurtin' me." But he didn't cry and didn't stop watching the iPad. Off to bed because God only knows what tomorrow might bring.

Getting Ready

So we are getting ready to go to CHOP on Monday. Cavan had to get blood work last week at 7:00 AM before food and before his meds. He was a rockstar. Doesn't even flinch when they draw blood. A Scooby Doo on the iPad helps a lot! 

Yesterday we had to go to Philly for a pre-admission meeting. We had Ronan, Anya and Cavan and boy was it an adventure! They said it would be about an hour. Three hours later we were home and were exhausted! They gave us this manual to go over this weekend to give us an idea of what would happen. I must say, it's crazy how much information is in here. But it was so helpful! And yes- I already read it.  We purchased some things that Cavan would need to help him ease into the diet. We are good to go for Monday morning! 

I think I am feeling kind of eh about it. Overwhelmed would be a good way to describe it. There is just so much information I have to learn. And fast.  I am not looking forward to beginning it but I am so looking forward to the outcome! 

What is the Ketogenic Diet?

So basically, in very nontechnical terms, the Ketogenic Diet is a diet that is a very high fat diet and no carbs. It is based on a ratio of 4:1. 4 fats to every 1 carb/protein. Our bodies work off of the sugars and glucose that come from carbs. The Ketogenic diet switches this and makes the brain think that it's not getting any sugars at all. And so it thinks the person is starving. Obviously, Cavan won't be starving. He will just be getting his sugars from all of that fat he will be ingesting. Somewhere in this whole my-body-is-starving process- seizures stop. They don't know how or why but they do for most kids. 

  It is a very complicated and risky diet in the beginning. He could become dehydrated. He could get too much acid in his blood. He could develop new or more seizures in the beginning. He will get sick (who wouldn't eating all of that fat!). That is why it is so important we be admitted into CHOP for the week so Cavan can be monitored. He will receive IV fluids. He may receive medications to help alleviate the acid in his blood. No one should try this at home! 😉

  We will begin the diet with breakfast on Tuesday morning. I will show you what it all entails once I learn the process.

OMG Tomorrow's the Day

So, I don't really know how it got to be the day before. Time flies. We got a call from the admission center saying that our check in time (I am pretending we are going away on some exotic adventure) is going to be at 3:00 PM. Anyone who knows me knows that this sucks. I would much rather go at the crack of dawn so that I can start the process and not dwell on it all day. But it is what it is. Kenyon is the best husband ever and ran me a bath last night filled with eucalyptus bubbles to try and relax me. It worked. And then panic set in. I started thinking about the moment we leave the hospital. See, I've never been one to worry about being IN the hospital because we have so much help and back up. It's that moment that they hand you the discharge papers and you are on your way. And then I take him home. And I have to worry about him eating the right stuff on my watch. Then I started thinking about how sick he will be. And how he might puke a lot. Or how he will be fighting me to drink olive oil. Or perhaps he will just lay there with IVs in him hating on me.  Yes, it is time to panic. I really try to focus on what will come out of it. Hopefully we will have a kid who is seizure and med free. Maybe not right away but down the road. That is the only thing holding me together from having a major panic attack. #whateverittakes

Why are we doing the Ketogenic Diet?

Pretty much, we are sick of his meds. He was taking a ton of different types of medications just to try and control his seizures. It wasn't working. We had tried Keppra, Depakote, Lamotrigine, Onfi, and I might possibly be forgetting some! And they weren't even working. The side  effects were terrible. From screaming for hours to being up all night, losing his appetite, gaining appetite, Aggressive behavior, impulsive behavior- I could go on and on. Now here's the thing. It's stopped his grand Mal seizures. Then he developed Absence seizures and Drop seizures. And no matter what the drug, we couldn't get it under control. He continued to have about five to ten seizures a day on average. So we kept upping his meds (increasing the amount he takes). And the more we increased the better his seizures were controlled. Unfortunately the more we increased his meds we started to lose Cavan. We had trouble controlling his temper. We didn't know how to help his highs and lows. We weren't sure how to discipline his behavior when he would go after his siblings. And then they told us about this diet. And it seemed like the right answer. A way for him to not have seizures and come off the meds? We were quite intrigued knowing that there had to be a catch... 

Just what is this diet all about we wondered??