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!