(Insert deep male movie trailer voice)
In a world where Bar B Q causes real danger…….

Last night we met family at a local BBQ restaurant. My cousin and her husband were in town and it was a great time to catch up. We rarely go out to eat as a family, so this was a real treat. I was a little concerned about how Gabriel would behave. This was his first time in a sit down and order restaurant in over a year. He did remarkably well considering all of the amazing foods being passed back and forth. He made a salt, pepper and seasoning concoction on this plate, dipped his pizza and chocolate hearts in it (EEEWWW!) and chomped them down. At one point I caught his arm reaching across the table to dip his pizza in the BBQ sauce. Thankfully I caught it and told him that wasn’t safe for his body and took the pizza away…but that moment was scary. The instant of oh no! what if we mess this seizure free streak up.

It is so nice not being on edge all the time, but the last few days he has not been eating enough and doesn’t have enough energy. He has tripped over things and fallen down several times because his reflexes are so slow. His sleeping patterns are bonkers. He is still sleeping a lot during the day but then is awake in the evening and into the night. It seems like we are constantly adjusting to his changing physical, mental and emotional needs. Logically I don’t want my 4 year old awake and playing at 11:00 p.m. at night but if his body has not let him be a kid that day, I try to sit down with him, and enjoy the moment.

A friend shared this amazing song about parenting special needs kids and I had to pass it along!
https://www.youtube.com/watch?v=B9RZ4V34WhY

Sometimes someone else just says it perfectly! I am excited to share this post by fellow doose Mom, Laurie
http://ourjourneywithdoose.blogspot.com

We passed the year mark of beginning the ketogenic diet! I can hardly believe we’ve made it through a whole year! What a year it has been.

Gabriel has been a super star through the entire process! We literally yanked every food he had ever known and liked from his life and replaced it with tiny amounts of strange stuff.

This is one of my favorite photos from very early in the diet but it makes me sad too. He knew how much we wanted him to be happy and like his food, so he would smile big for pictures.  He loved getting to eat his strawberries and “Gabriel’s Special Candy” when we were on 3:1 ratio.  I miss those bright eyes!

Looking back over the last year is crazy. Those first few weeks were pure hell, he hated the food, wouldn’t drink the cream, he wasn’t getting enough calories, so he had no energy and he was still having tons of seizures.   We have stuck to the diet with a tenacity I didn’t know I had.  We could not have had the success we have had without hours of help from our parents, pizza angels and cooking night friends!

Here is a shot of the latest cooking night rock stars, showing off a small portion of our measuring bounty!

Gabriel has handled the limitations of the diet like a total hero. At first, we were very careful not to eat anything in front of him that he couldn’t have.  Now we eat almost anything. I don’t keep chips in the house because he really eye balls them.  Several times since Christmas he has exhibited a desire for me to eat food he can’t have.   He lives vicariously through me. Most recently he insists that I eat a snack bag of fish cookies at his physical therapists office.  Every week he grabs a bag and brings it over for me to eat, then pulls them the cookies out of the bag one at a time and feeds them to me. What a sweet boy!

I am trying to find ways to involve him in the cooking. He wants to help so bad. I have always enjoying cooking, especially baking and imagined how much fun it would be to involve my kids in the cooking process.  The exact nature of keto makes that so hard.  Earlier this week he was happy with his own scale, a bottle of cream and salt and pepper shakers. He created his own “dip” for his pancakes.

We are still at 0 seizures for over a month! YIPPEE!  We wish we knew what was keeping them away…it is the new meds alone? or the meds and diet combo?  Chuck and I have both had several moments wondering if the diet is still necessary, however it did lower the number of  gran mal seizures greatly and eliminated the drop seizures…so will keep calm and carry on, delighted in every day our boy gets a chance to learn, grow and experience life seizure free.

We have some big news in our little world. Gabriel is beginning to willingly take his medicine! After over a year of having to fight him 3 times a day, literally having to wrap him up in blankets and force him mouth open, he is coming around. Now he will sit on our lap or occasionally even stand up to take his medicine. We still have to pry his mouth open most of the time but once it is open, he will say Ahhh and finish the medicine.Medicine time when I was home alone was especially traumatizing for Gabriel and I. I am so unbelieveably proud of our little guy for this milestone!
This is HUGE HUGE HUGE wonderful news!

He continues to be doing very well in all areas of life right now. Still 0 seizures! He is interacting more and more. His coordination and motor strengths are slowly but surely coming back. He is regaining skills we took for granted a year ago….like carrying a plate with food on it and not letting all the food slide off the plate. He is asking “Why” questions again. 🙂 Many of the developmental milestones he was hitting a year ago before the seizures started are coming back from hiatus! We had his IEP (individualized education plan) meeting a couple weeks ago and I got a little teared up looking around at the team of amazing people working with him. He is currently getting speech,physically and occupational therapies. All of them are helping our boy live into his full self. Beautiful and amazing to see!

Our whole family got to go to St. Louis this weekend 🙂 First time in over a year!
The majority of my relatives on both sides of my family live there and 4 or more visit per year have been the norm for my entire life.

The big adventure of the trip was the minivan having transmission problems 1 1/2 hours into the 4 hour drive. Thankfully, my sister and her family where traveling the same road and came to rescue us. 6 people, 2 giant carseats and all the luggage crammed into a CRV made for some interesting seating arrangements 🙂 —The kids were quite comfortable at least.

It was great to see family and watch Gabriel playing with my cousins kids.Brought back lots of memories of my cousins and I playing in the same houses, with some of the same toys 😉  It was kind of a bummer that Gabriel spent most of the time sleeping and didn’t spend as much time getting to play with the little kid cousins on Sunday. The pneumonia seems to be taking a good amount of time to get over. Hopefully we continue on our good health path and get to visit again soon when he has normal kid energy.

We took him in for blood tests yesterday because of the fevers and the extreme sleepiness (he missed school Monday and Tuesday). The lab tech drawing his blood kept double checking that we were really running as many tests as she had listed……we were running our standing order along with 3 or 4 other things…double checking everything. Got a call back today that everything was “NORMAL”. Happy Sigh! “NORMAL” is a beautiful, beautiful word in our world!

and even better than normal……still 0 seizures….over a month! HAPPY DANCE! HAPPY DANCE! (yes readers…I expect you to stand up and do the happy dance)