Today I got to meet with a fellow Doose Mommy. Her family will be beginning the ketogenic diet with her sweet boy on Monday. We connected through a facebook support group for parents of Doose Kids.

I didn’t think we would ever meet another doose family in person. Turns out we go to the same church and live only minutes away from each other!

I was so excited to be able to share some of our wisdom and lessons we have learned. I have been praying that somehow our story and journey can be a blessing to someone else.

Chuck and I immediately knew we wanted to reach out to this family. We know that we don’t have all the answers but we are further down the road. We also remember clearly how alone we felt in the starting the diet. We wanted to offer the personal touch that had not been available to us.

It was a fun afternoon for Gabriel and I! Gabriel played with the 2 kids in the family  and the mom and I just talked. This is the first time I have been able to sit face to face and talk with another Mommy battling the doose “beast”. Of course their story is different than ours in detail but emotions and life changes involved are very similar.

We had a huge snow here, so G and I were home all day. We played and played and played some more. I kept telling him we could go outside when Daddy cleared the driveway. As soon as, Gabriel saw Chuck,he ran and got his shoes. I was running around gathering up snow gear, and Chuck was messing with the snowblower. Gabriel walks over to me and says “I put my shoes on!” —as if to say….time to go outside…I’m ready.

This would most likely be good news in the homes of many preschoolers. It is always nice when your child can take care of something on his or her own. For us it was a huge cause for celebration! Gabriel works on motor planning and self care skills a lot during his therapy sessions. He is regaining so many things lately but we are still relearning how to undress and haven’t focused much on dressing. Our therapist has explained that undressing comes first and then dressing.

SO I had NO idea he could put his shoes on by himself! Almost everytime I put his shoes on , I talk through all the steps and try to have him do some of them. It was awesome to have him just do it! Plain and simple…he put on his shoes….all by himself. 🙂 Proud, proud moment. G was totally unaffected by it. I wonder how many other things he knows how to do that we don’t know about yet 🙂

We have not seen a seizure in several days. So nice to feel like we can come up for breath of fresh air. Looking at the calendar is weird right now, because this time last year things were just starting to fall apart. I am so relieved that we are having some good times ,and a reprieve from the intensity of fighting illness and seizures.

On another fun and happy note, we have not had to call 911 since January 31st! I thought we had made it 2 weeks today…but it was actually 3 🙂

I am so excited to say that we have had 4 days without seizures 🙂 –plus G is doing well with coordination, speech and interacting! It is fantastic to have his personality shine at the same time we are having days with no seizures.

Gabriel spiked a 104.7 fever at 2 a.m. Saturday morning. That was a little scary as we never dealt with a fever that high. We called the hospital, chatted with the nurse on call, covered him in cold towels and gave him Tylenol. We are were relieved when the fever broke! It was back up to 103 by 6 a.m. but then it broke again. The Ketogenic diet drastically limits the over the counter medication we can use for G in these situations. He lost his appetite but kept eating at least a little bit. This was a huge relief because when he stops eating things usually go sideways. Not at all glad that he had a raging fever but this is the first “sickness” since being on Keto that he has weathered well 🙂

We have a new keto formula called Ketocuisine avaiable to us for cooking. You literally have to go through the epilepsy clinic to have permission to buy it. Gabriel has been asking if I could make him crackers a lot lately. He especially misses Cheez its. I am happy to say that with our new ketocuisine I made him cheese crackers and he seems to like them. They involve several steps but in keto world they aren’t too labor intensive. (which always make me happy…I’d rather spend time with him then cooking for him).

We have had a few really good weeks with G man. He is having an average of 1 seizure per day and we have not had to call the ambulance in 10 days! Things are clicking so well for our little man right now. That last sickness and hospital stay were really rough but we are reaping the benefits of the medicine changes big time now. He is more interactive, coordinated and talkative than he has been since last summer.

He is having an action packed week.  His new school had a valentine party on Tuesday.  I got to go to the party and watch him pass out his valentines. It was the first time I didn’t preemptively try to control him receiving food and it went really well. Gabriel and I talked before hand about how he might be getting candy and if he did that I would trade him one big sticker for each piece of candy. During the party, he would turn and ask about me each piece of candy (I think checking to see if he might get to eat it later)  and say ” i’ll get a sticker?” Thankfully the teacher set the rule  of no eating until they got home and parents could decide 🙂 Gabriel LOVED the party. He kept saying “I’m having a Valentine’s Day Party. With the kids too”

I was super proud of the Keto Cupcake I made him to eat at the party.

He is continuing to make great strides at Physical Therapy. He walked 3 steps on the balance beam all by himself on Friday!  Several months ago his body could barely stay on the beam even with an adult standing on each side holding his hands.  He has 2 physical therapists who work with him, Todd and Amy. Todd has not seen Gabriel since November and commented several times on how great G was doing!  🙂  Check out the Kicking/Balance Beam fun in the video below.

We continue to be overwhelming blessed by generous and kind people! If you had anything to do with the awesome gifts in the following pictures…THANK YOU!

Gabriel had a great first day at his new school! He walked right in like he been going there since the day he was born 🙂 I did have to run back to the school with his helmet because we left it at home–oops. I tried to slip it in the door to teacher in stealth mode so as not to upset him. Totally unnecessary. He was deeply involved in lego play and didn’t even know I had come or gone.

I realized as we drove away that it was the first time I had left him with “total strangers”. I have always personally known, worked for or had a close friend who knew or worked for everyone I have left him with. I wasn’t at all worried but I finally had a personal understanding of how the parents of the students I teach feel. My confidence was rewarded when his teacher called 1/2 through his day to report that he was acting very tired and kept trying to close his eyes. She was making sure it wasn’t a seizure. (NOPE…just a boy who didn’t nap well weekend and stayed up until the superbowl was over!)

Tomorrow Daddy drops off and Nonna and Papa pick up while Mommy goes to work. Gabriel passed his “can I handle change?” transition test with flying colors. We will see how I do tomorrow. Thank you everyone for praying and the sweet notes of encouragement.

Last year, Gabriel had his first seizure ever during the super bowl. I will never forget it. Worst day of my day. He was standing by his easel with a marker in his hand, he stood up said “mama” in an alarming tone, he fell down, tried to stand up again with a scared look his eyes, fell down again and started convulsing. I freaked out….grabbed the phone and while dialing 911, rocked Gabriel and tried to get his attention. Thank God for 911 dispatcher…who was calm and reassuring. He talked me through the safety procedures for caring for someone with a seizure. Lay him on his side, made sure he is breathing, let him fall asleep. I clearly remember feeling like I need to keep him awake. The fire engine and ambulance arrived. I called my parents and Chuck. We went to the nearest hospital to our house. Chuck had called my dear friend,Traci, who actually beat us to the hospital! After a quick visit in the ER we went home, feeling relieved that is was “just a febrile(fever) seizure”, very common. Good chance we would never see another one.

Here we are a year later. No longer novices but as an emergency room doctor recently referred to us “road tested”. Tomorrow Gabriel will begin an extended assessment period (3 to 4 weeks minimum) at a preschool with our local school district. This assessment will give us a clear understanding of what developmental services will be made available to Gabriel.There is a good chance he will qualify to stay in the preschool program and recieve services that way. I am excited, nervous, happy and sad all at the same time. I know he is going to do well there. We went and visited last week. It is clearly a great program. He clearly loved it, went right into the classroom and started to play. It is overwhelming how grateful I am to be in an area with amazing schools and fantastic resources. As glad as I am for the resources, I can’t help be take a moment and grieve that we need them. A year ago Gabriel was functioning right at age level in physical accomplishments (running, jumping, using utensils) and way above on cognitive thinking. He continues to develop and learn but he is still relearning thing like how to walk up stairs alternating feet and although he still learns new concepts quickly, he has a difficult time reporting or articulating them. I am also sad because it means Gabriel will not be at the amazing school I teach at. Before he was born I imagined him graduating from Discovery Ark Preschool. It is ok that our path is changing. I am reminded of my devotional book “A different dream for my child”. Tomorrow the dream gets to officially change….who will his new friends be? what new things will he learn? how will our family be better because of this opportunity? Please pray for us as we take the next step in our adventure tomorrow.

Recently, Gabriel announced he wanted to eat pancakes.  He used to eat pancakes regularly but had abandoned them months ago. He get insisting he wanted them.  Excited that he was wanting to try a new food, I ran to the grocery store to buy all the ingredients.

We got our the scale and measured all the ingredients.

It was a rare night, when Chuck and I were both home, so Gabriel got to help with some of the prep. For this meal prep included separating eggs and weighing the yolk and white individually then whipping the egg whites, chopping blueberries, as well as, making a separate set of eggs and coconut oil to eat on the side so the meal would be in ratio.

He loved watching the runny batter turn into pancakes and help me FLIP them over.

It took almost 2 hours total from when he first asked for pancakes to when he got to eat them  (had to start over 2 twice because of spills, measuring mistakes and recipe errors). But he was very patient and proud that he got to help. He gobbled them right down and hasn’t looked back since.

We have tweaked the recipe so it is a bit easier to make and doesn’t include a side of eggs. We were especially glad for pancakes during our recently hospital stayed because they were easy to prep and transport.

My favorite part of the new pancake love, was the night we had breakfast for dinner. Gabriel had a lot of fun commenting” Mama is eating pancakes, Daddy is eating pancakes, Nonna is eating pancakes, Papa is eating pancakes.”

Anybody going to make breakfast for dinner tonight? 🙂