I was hoping to have Chuck write this blog because he is better at all the technical stuff but the man is BUSY! So here goes from my perspective!
First, it was a very good visit. Everything ran on time and the staff did not seem frenzied or rushed like they have in the past 🙂

Gabriel has gained almost 4 pounds since his hospital stay in January, which would have been a concern expect he had lost a couple pounds while sick before entering the hospital and he has grown 1 1/2 inches since late Dec. (explains why all of his shoes and pants suddenly didn’t fit!)

Everytime we go to a visit I have a secret hope that “THE” treatment will have been discovered and that we will leave with definative answers. While that did not happen, we do have a plan moving forward. Sometime next week we will be adding one more medication. It is one that we asked about after reading other families having success with it. When we asked about it this summer, we had got a solid NO. Several months later and still having seizures the doctor said he was willing to write a prescription for it. This particular drug can react badly with one of the other drugs Gabriel is on, so we will be doing additional blood tests every 2 weeks to make sure all of organs and other body systems are doing well with both. The chances of this additional drug giving long term help are tiny like .5% but we are planning on moving at with it. The hope is it will give us a few good weeks while we prepare for Gabriel to recieve something called a vagus nerve stimulator (VNS).

The VNS is a small device, sometimes called “pacemaker for the brain”, that is surgical implanted in the chest, with a wire that runs to the vagal nerve (in the neck). It is then programed to send very low impulses to the brain. (There is a lot more involved but I am still learning and don’t want to get the wrong information out there). The VNS comes with a magnet that can be used to slow down or stop seizures once they start. Our hope is the VNS will help especially with the periods of stacked small seizures that we keep seeing every month. The Doctor said the ketogenic diet and the vns have been shown to work well together.

It is pretty crazy and amazing stuff. I was very skeptical and nervous about possible surgery before the visit but not so much now. The Doctor gave us a thorough pros and cons list then gave us the choice to move forward or not. The doctor also said just because we start the process of consults and scheduling the surgery doesn’t mean we can’t put it on hold if we decide.

Hope this makes sense….didn’t get much sleep last night so my brain is a little more fried than usual.

How you can be praying for us:
1. Rest…it is a busy time of the semester for Chuck and Gabriel has had several middle of the night seizures this week.
2. Discernment in decision making , specifically in regards to surgery

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? 🙂

We have been home from the hospital for a full week now. With all the activity going on around here “Full” is the correct word for sure. Gabriel has had TONS of wonderful moments! Lots of great talking, interacting, playing during the day. Several adults who see him regularly have commented on how great he is doing 🙂 It has nice to have others see him on good days too. Evenings have been a different story. On Wednesday and Thursday night he had long, violent seizures. Both of them kept going after we used the emergency medication, so we called 911 both evenings. Both times the seizure had ended just as the crews arrived (which is amazing because we call 5 or 6 minutes into the seizure). Both times all his vitals and oxygen great. So we refused transport, which is a fancy way to say ….. we stayed home. 🙂 All of the professional have been wonderful and kind…each time they keep saying call us when you need us, we will come back, if you need us tonight call again.

TRAINS! TRAINS! TRAINS! Our kid LOVES trains and one of the reasons he loves the hospital, is that they always have trains for him to play with. There was one little problem in this visit. The floor we were staying on had tons of thomas trains but the tracks had been lost (taken home by the last user). Our fantastic nurse used her connections and borrowed some tracks from another floor. G was in heaven!

Of course we had to wear our new superman cape while playing trains!

We couldn’t let the hospital have a thomas train play box without tracks, so we used one of our target gift cards from Christmas and bought a new set of tracks…with tunnel of course!

Gabriel tested the new set out and it worked great! So exciting to think about the other kids who will have a happier stay at the hospital playing with a familiar toy.

We are very glad to have had many moments of JOY in our lives the last week, we pray that everyone reading this has experienced JOY recently too!

Gabriel is having a fantastic day! His large motor skills are firing on all cylinders for the first time in months! He is very talkative and engaged. While eating his pancake this morning he asked Chuck to sit down next to him at the table and then Gabriel engaged in his best 3 year old give and take conversation. He has been running around, wrestling, dancing and sweeping.

We got to come home from the hospital on Friday. He has done nothing but improve since then . He is regularly asking to eat and saying “I’m hungry”. It is a really big deal that he is asking for food since it is often a huge battle just to get him to eat. He continues to eat pancakes, pizza, puffs, chocolate, cheese and pickles and cupcakes (big variety for him).

Last night he ran around the sears outlet for at least 30 minutes,without his helmet on, checking out every refrigerator and oven. (Big box stores can be especially unnerving because every square inch seems dangerous especially if he were to suddenly fall). It was very fun to watch him pretending to cook, eat and then refrigerate pizzas 😉 I giggled to myself a bit realizing that his pizzas are always on his mind.

The doses on 2 of his 3 medications have been raised. He usually has several good days after a raise in medication. We are hopeful to have a longer honeymoon period than a few days..but we will take whatever we get. He is testing his boundaries and being pretty ornery the last few days as well. I was really annoyed to be going back through the “no biting mommy”, “no riding on the cat” for what felt like the 10th time, when I remembered each time this one medication is upped this behavior emerges. While these ornery behaviors are annoying they come hand in hand with lots of good stuff. So instead of being annoyed I refocused and celebrated that he is doing well, his brain is firing, his body is remembering, relearning and discovery new things.