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.