Today, I got to say things “No”, “Stop” ,”Not safe”, and “What are you doing?”. My little man is acting like a regular 3 year old, pushing the limits 🙂 So exciting.  He was a total chattberbox today, asking lots of questions, bossing my around. “You STAY THERE! “Put your glasses ON!”

He went to the church nursery for 2 hours today while I was in my mom’s meeting, then we went the local children’s farm, and then he played outside for hours after his nap.  He is so great about his helmets! He just goes to grab one anytime he is going to play outside! We maybe going a little overkill with them on good days like today, but he isn’t bothered by them and gives us extra peace of mind.

Gabriel and Grandma transplanted the flower he started at school yesterday.

He loves his new t-ball tee!

He even kind of let Grandma help him.

Last week, at this time I felt like I was hanging off  tallest building in town, gripping on for dear life, hoping not to plumet to into certain disaster. This week, things are much better. I’ve been saved from the immediate danger and have my feet firmly planted on the rooftop. The only problem is I am still on the rooftop and I belong on the ground!

Doose has certainly turned our lives inside out, upside down and caused all kinds of crazy….but for today…the view from up here on the rooftop is good. My kid did have not seizures today, he is talking, laughing and playing.  He has had 2 good days in a row. I made sure to stop and write down a few of victories today because we will need them for darker days when the rooftop seems too high and unsteady.

Gabriel got to go back to school today! He even ate lunch there! Chuck’s mom spent the day in the classroom with him, just to be sure he didn’t have any seizures or other issues.

Playing Dominos with one of his school friends.

Playing outside. Apparently he ran to the top of the play structure first thing.

He loves the diggers on the playground. He does a great job wearing his helmet. I heard all the other kids were really nice about it too.

Our boy loves trains! So fun to see pictures of his day and hear a great report. Since, he only goes one day a week, next week will be his last day of school for the year. Sniff, sniff…his first year of “big boy school” has gone by so fast.

We have had several good days with little man. He had 0 seizures today! Woo hoo! Yippee. His little personality is starting the shine through again. He has been playing with his toys a lot and asking us to read him books and play puzzles. He is not interested in watching tv because he wants to play! (OOPS…I was wrong…he had 1 very small seizure early in the morning but bounced back after medicine!)

I channeled my inner Rachael Ray again tonight, and taught my mom how to be a Keto Chef.  We worked together and made Gabriel’s Pecan Applesauce Waffles.

Here we are hard at work.

Getting set up: Recipes, ingredients, cups and scales

2 waffle meals ready to eat! (We made 8 total)

While, we cooked Gabriel and my dad played trains.  After watching Chuck take pictures of Nonna (my mom) and Mommy, Gabriel insisted that we take a picture of him and Papa too!

We were cooking for about an hour and a half.  When we started Gabriel had just eaten a pizza and was having a great time playing. By the end he was begging for a waffle. I felt so bad having to say no 🙁 but at least I have some food ready for the week!

The facts of today are good.

1.  Gabriel only had 1 seizure, which was not until 8 o’clock at night.
2. He had an EEG that did not show seizure activity.
3.  He had an awesome time playing with his friend Jack at Crown Center.

Even with many good things it was a roller coaster day.  G and I got home about 12:30 from our playdate. Chuck immediately informed us that the hospital had called to inform us that Gabriel’s doctor had scheduled an EEG for him at 1:30. We quickly gathered everything together and hit the road, while calling the doctors office to find out why we were getting the EEG.  We found out the EEG was to determine if some new facial movements were seizures.

Since Gabriel was having his first good day since Monday, none of the distinct issues occured. There were several “events” during the EEG but we don’t know what they were. Our doctor called and left a message before we even got home that the EEG was not showing seizures and to call back. By the time we got home and called back we had missed the doctor. Which means we are waiting until Monday. So hard.  I am trying so hard not to be consumed by fear and worry.

I was looking up a verse about Moses online and Bible Gateway had the following verse as the verse of the day:

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7 NIV

The perfect verse for me. It is one I have tried to weave into my life for the last several year. Perfect timing because it was the verse for the day starting at midnight.  I read it 12:30…way after I should have been in bed but I was awake nervous and worrying…about my son, my husband, myself….our whole little family.  My request to God is that Gabriel gets to be a fully functioning member of society during his life on this earth and that his life is long and full.

Sigh…we have had 2 bad days in a row. Which we hate! Monday was awesome…so we knew Tuesday would be bad. There is a clear pattern of a bad day after a good day. We were saddened that today was bad as well. I can’t count the number of times I have thought “this is as bad as it gets” over the last 2 months, just to be confronted with something worse. The day began at 2:30 a.m. with a 4 minute seizure that led to mouth clicks. He rested but did not sleep until 6 a.m. when he got hysterical because he was so hungry. Today was difficult because he had several quick and aggressive seizures that cause him to fall down. Afterwards he cries (I don’t know if it is frustration, or pain) and will not let me console him. He also had tons of little mouth clicks (well over 100) that disturb him. On top of the seizures he can’t seem to go to sleep even though he is tired. He was very upset for a solid 3 hours today. I spent 2 hours driving him around in the car. He would quiet down and almost fall asleep. Whenever I would pull in our driveway he would shake his and scream. We stopped by a friends house and sat outside on the lawn and he sat in a swing for a few minutes. He seemed calm and relaxed the whole we were there. We did have some up moments in the day. He watered flowers with Grandma, chair danced to Yo Gabba Gabba and around 5 (after his first dinner) he perked up a bit and started talking. I went to small group tonight and got a report that he was talking and playing while I was gone.

BROWNIES!On a brighter note….I got to cook Gabriel brownies! Now that he gets some extra calories the nutritionist sent me some yummy snack options.

I had to do some grocery shopping because I did not have flax seed meal, coconut oil. Since everything has to be brand specific as well, the only ingredient I already had were the ground macadamia nuts.

Mixing in the sour cream….seriously….yummy!

The foil pan I created per the recipe directions (first time I have followed instructions on creating a baking device!)

Finished product. (Hard to see but they look like brownies!) This pan made 10 snack servings for him. He liked them A LOT! Maybe next time he will eat them slowly enough for me to get a picture!

It was so fun to give him a snack of Keto Fudge and strawberries today. The extra calories clearly helped because he did not eat all of the brand new mac-n-cheese we made for his dinner.

We were so excited to finally have a mac-n-cheese offering and he did not seem to like it. I think he doesn’t like the aftertaste of cream. Everytime we to get him to eat cream he will take a couple bites, then a few seconds later make face and kind of shake his head and shiver.  We are going to try again with a super sharp cheddar cheese, hoping to hide the heavy cream flavor. Hoping we find a mac-n-cheese he likes.

He had a lot of energy today. Went to a playdate, then open time at his gym. We are planning to take him to his day at Child’s Day Out tomorrow. We are going late so he will skip snack time but we are packing a pancake and jell-o for him to eat lunch at school. Hopefully, it will go well. He loves being around other kids and is clearly missing it.

Now I need to go print off all of his recipes and rebuild our cookbook. Very excited that we have snack recipes now and need to update all the old recipes with the new ratios. I am truly thankful we have nutritionist to work with and figure out all the calculations for us.

Today began with the victory of a new meal Gabriel will eat!  Chuck worked with me last night, as I channeled my inner Rachel Ray, to create a pecan, applesauce waffle for our little guy. The applesauce waffle makes 4 meals that he will eat! So far, we have eggs and cheese, Keto Pizza, Keto Blueberry Pancakes and Pecan, Applesause Waffles.

We used applesauce, cream, eggs, pecans and a few other ingredients to make something a little bit sweet and CRUNCHY for him! I can tell he is really missing crunch and specifically toast. He asks me everyday for bread or toast and mac-n-cheese. (We think we may have a solution to the mac-n-cheese arriving from Amazon on Tuesday).

Showing off the beautiful creation. It actually looks like a waffle! (Notice him sitting in his chair behind me. He runs and jumps up there every time he thinks he might get food).

Chowing down the waffle! No time to stop and smile! The cup on the side, is filled win an AMAZING chocolate whipped cream sauce, that he would not touch! We are putting extra cream, in some form, on his tray at every meal.  My hope is at some point he will try and like something!

The agony of defeat portion of the day came when Gabriel had a 3 minute seizure that began while he was sitting in his chair after dinner. Chuck ran out to the garage for a second to grab something and came back to him seizing.  Seconds before he had been chatting with his Grandma Gaye, who was in the next room. That is how fast and without warning they happen.  He has had other seizures this week but this was the first time he had one in the afternoon in the quite a while. Sometimes the sets back feel small sometimes really big. Tonight felt like a big one.

We are trying to focus on the VICTORIES! I was chatting with a friend on the phone today and she challenged me to write down the victories. No matter how small, write them down and post them somewhere right in our faces. I am totally doing it! Our victories for today are a new meal, and a fun night checking out train displays at the mall.

Anyone else struggling with focusing on the defeats? Want to join me in focusing on and celebrating the victories?

I never imagined there would be a time when I would miss taking Gabriel to the grocery store with me. Let’s face it grocery shopping with a young child can be time consuming, chaotic and exhausting.

I ran into Hy-vee to get tomatoes for Chuck and suddenly found myself very sad. This local store offers free cookies to kids. It has been a favorite routine of G and I go to grocery shopping here. He was always in a good and silly mood while munching on his cookie. We would sing silly songs while walking down the aisles, he would ask me to spin him around in the circles in the cart, or give the cart a huge push and let go.

We have been able to avoid foods he is not allowed to have so far. I know the time is coming when we will have to say no to cookies, chips, cake, ice cream and all other foods that he might see while we are out and about. I know it  just food, but it makes me sad that his brain doesn’t work right, and because of this he is going to feel excluded and sad.

Several times a day we check Gabriel’s ketone levels. We do this to make sure he is in ketotisis. This the state at which the brain fuels itself with fat not carbs or sugars.  His entire diet is based on keeping him in this state while giving him just enough calories to grow. Right now he is eating 4 meals of 263 calories each.

We place cotton balls in his diaper to absorb the urine. Then after he is gone potty we use a ketostix (small strip between box and bottle) to test the urine.

We squeeze the cotton ball on the strip and hope for the darkest colors. This means his ketones are “large”, where we want them to be.

This is the test result we wanted.

Until today we have had success with ketone levels. Gabriel had 2 sticks show moderate to large instead of large today. We are keeping a log of everything he is eating so we will watch tomorrow and see if tweaking things a little for the next couple days fixes this.

He has had a couple seizures the last couple days, which is of course disappointing. We know this was to be expected. The nutritionist have reminded us we are aiming for seizure reduction with the diet. The more freedom from seizures the better. He had a really great day on Sunday, which is almost always an indicator that a seizure will come the next day. Super stupid huh? 🙂  Big sigh!

The upside is that he seems to be recovering from the seizures faster. Previously, if he had a 4 minute seizure like he did today, he would have slept for about an hour then been pretty out of it for quite a while. Today he rested for a while, then took a nap,and then was ready to play a little. The most exciting for me was that he was able to speak clearly right away today.

Chuck is  quickly becoming a keto culinary genius! He is researching and creating (with the help of our online recipe creator, Keto Calculator) some of Gabriel’s favorites! Last night he experimented with 2 pizza recipes deciding on one made with a crust of pureed Macademia nuts,  whipped egg whites and mayonnaise.  If you know Chuck very well you realize this is an incredible labor of love because Chuck HATES mayonnaise. I could right an entire blog post on his dislike of mayo.

Gabriel loved the pizza. After pizza success Chuck tried blueberry pancakes today. They were equally successful. ( I wanted to put the videos of eating these on the blog but it was more detailed than I have time for right now. I will put them on facebook for those of you on facebook.)

We are very excited to be finding foods that he enjoys, are yummy and familiar! The recipes take a lot of work because each ingredient has to be perfectly measured to the gram and only make 1 serving. We are planning on spending time each weekend learning new recipes and trying to find ways to freeze and do other prep ahead things.

I am currently snacking on a random snack pack of M&M’s I found in my car. We are making sure to eliminate all of his favorites from the house and cars.  Eating has a been a bit challenge for me. I am committed to not eat anything in front of Gabriel that he can’t eat and I can’t eat what he is eating. I have been able to leave the house for a short time everyday and sneak things like my favorite Wendy’s salad and zone bars. I literally ate a ham sandwich in the bathroom yesterday! I keep joking that I am either going gain 30 lbs from late night noshing or loose 30 lbs from lack of food. It is all worth for our little man though!

Cheers to a seizure free weekend!