The seizure free streak was broken at 12:30 last night with 1 minute grand mal seizure. It was followed by 2 more, one minute each, at 3:00 and 7:00.

So here we are again trying to “figure it out”. Is there anything we have done differently in the last couple days that could caused these. he has finally been eating well.We even got to add his 2nd snack back in yesterday!

For some crazy reason Tuesdays are often the day that big seizures come. So….maybe if we could just wipe Tuesdays off the calendar everything would be ok.

“What do you eat?” This is one of the most commonly asked questions I get after explaining Gabriel’s diet. I usually answer with some form of ‘I don’t know”. It is definately one of the many things we are figuring out.

Gabriel is used to Chuck eating different food than us. He has been on a medically supervised diet has been on for over a year and is looking and feeling great. Chuck and Gabriel both have medically prescribed diets, so that leaves me. I try not to eat food that Gabriel would like but cannot have in front of him. Since I am the one who has fed him until now, we like a lot of the same things 🙂 I miss pasta, bread and apples with peanut butter! I eat a lot of lean cuisine chicken enchiladas because G does not like them! On a good day I will make a salad or sneak an apple while he takes a nap. Even as I am typing this post I realize that some days I only get a carnation instant breakfast, few triscuits and a zone bar before he goes to bed. Then I usually end up snacking on popcorn or grabbing a frosty. NOT a good long term plan.

I am starting to eat more and more foods in front of him to see how he responds. I ate a hamburger made on the grill in front of him last week and he didn’t blink an eye. I wasn’t totally surprised because he wouldn’t have wanted a hamburger anyway. We talk a lot about how he has special food that makes him “strong and healthy” and how any other food would make him sick. He has a great understanding.

A couple days ago he wanted to hold the peanut butter jar and I let him. We have a new peanut butter I make him now that he loves! I still wouldn’t eat a peanut butter sandwich in front of him.

There seem to be 2 strains of thought from parents on the Ketogentic diet. Some give their keto kid the closest thing available and the rest of the family eats like normal, while others do not. Since we don’t have any other kids we have the freedom to keep foods he can’t have out of the house. I want him to feel like no matter what Mommy is on his side.

I am hoping that as we continue to get our routine on track I can factor in more intentional and healthy eating for myself. In the meantime I am thankful for my triscuits and carnation instant breakfasts 🙂

As of tomorrow morning we will be 6 days seizure free! Chuck and I are very hopeful that this new ratio is perfect for our boy. His appetite is fully back today as well. He ate all 4 meals and his snack! I stayed in his chair after every meal today waiting to see if I would offer him extra strawberries. I am hoping he will start eating cream so we can give him more of the fruit he loves so much.

At 8 a.m. this morning we celebrate 3 days seizure free! Yippee! It seems we have turned a good corner! We are pretty sure the seizures on Father’s Day were due to a fever and regular sickness.

The challenge we are facing right now is that he has very little interest in food and is refusing to eat. While his ketones level (which tell us his brain is processing fat the way it is supposed to) are good and he is not having seizures, he is exhausted! He is taking 2 or 3 extra naps each day and when he is awake he is either grumpy, dragging or over energized.

Right now we are asking for prayer
1. That he will have an interest in food and eat.
2. For all of us to have the energy to make it through the day.

The bible verse that keeps coming to my mind lately is Phillippians 1:6
“being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.”

We had a really good steak of 5 seizure free days that ended yesterday, on Father’s Day. He had 4 drop seizures and 1 big gran mal that was 2 1/2 minutes.

He has not been interested in food since then but has eaten the majority 99% of his 2 meals today. When I gave him his afternoon medicine he threw it up right away. I knew from experience that if the meds don’t stay in we need to redose. I set to getting his meds ready again and he rested on the the kitchen floor. The second try was a repeat of the first.

At this point his stomach is totally empty and he has no medicine in him. Just took his temp and he has a slight fever 100.5. Sigh. We have a call into the doctor to see what happens next.

I know we are making progress but it seems like everytime we get our footing there is another big set back.

ok…gotta start with the best news…..Day 2 of no seizures!!!!!!!!!!!!!!!!!!!!!!!!!!! Yippee!!!!!!!!!!!!!!!!

This week we are changing the diet for the last time (in the foreseeable future). As with the last changes we expected some hiccups with the change and we have had them. Gabriel had a big 6 minute seizure at my parents house on Tuesday morning. We have to use his emergency valium medicine to stop it 🙁 Big bummer because he had been having a great morning. We had all spent the night at my parents house because they live near the airport and Chuck had an early fight out on Tuesday . He got to attend a smart people conference on church communication and growth.

My mom had to work on Tuesday but my Dad spent the entire day with Gabriel and I to make sure he was ok and that I had help if I needed it. My Dad spent the night with us, then my Mom came down to my house (with my niece, who she babysits on Wednesdays) to help.

It was extra comforting to have my parents around even though G was doing well. We are so blessed to have them close by. They have been amazing, helping us babysitting and date nights Gabriel since he was born 3 years ago…and especially great since the first time I called during G’s first seizure (super bowl sunday). They spent the night in the hospitals with us, come over to sit with G so we could sleep, taken him for playdates and made him keto pancakes. Love you Mom and Dad!

We think things are improving…or at least going in the right direction this week.  Gabriel has continued to have drop seizures which cause him to fall down but he has not had any big grand mal seizure this week.

Today he had a great day. Talked well, enjoyed a playdate, interacted and played TONS with Mommy.  It is very exciting to see his personality shining through on days like this. He did have 4 small seizures tonight. Each one was a short gasp followed by a second or two of silence, then he would cry. He didn’t fall down or loose all muscle control like he has been. Then after 10 seconds or so he would be back to playing 🙂 Very encouraging.

We move up to 4:1 ratio next week. This ratio has been shown to be the sweet spot for doose kids. We are praying it is Gabriel’s Miracle in the diet. (The ketogentic diet is referred to as “The Miracle Diet” because it saves so many children.)

It is overwhelming to think where we would be without it.  We have been doing keto for 6 weeks now and it is starting to feel “normal”.  This process has reminded me so much of when we first became parents.  We are all sleeping through the night now ( haven’t had a seizure wake up in weeks).  We understand the schedule he needs and will do whatever it takes to stick to it!  We leave the house with a bag filled with TONS of extra stuff just in case.  This new addition of doose to our family is not one we expected but we are figuring it out.

THE GOOD:
The new diet ratios seem to be working well with Gabriel’s body. He has having great ketones readings almost all the time. He isn’t asking for food all the time either, which we think means he isn’t feeling constant hunger.

We have had several really fun and neat things happen the last few days. Gabriel got to go see a sneak preview of Madagascar 3 this weekend. He LOVED the 3D cartoon.

Gabriel has been able to go to Sunday School and have playdates 🙂 He wears his helmet most of time because he wants to.

We also got not 1, not 2 but 3 pieces of amazing real mail! 2 were beautiful notes from friends with gifts included and the 3rd was an anonymous envelope with 2 adorable gift cards to Toys R Us! THANK YOU!!!! I want to say again how much Chuck and I appreciate each and every personal touch we recieved. This battle we are fighting is harder than it should be and each act of kindness keeps us moving forward.

THE BAD:
Gabriel continues to have drop seizures every day. We has at least one where he falls to the ground every night (almost always at 6:30). We know we are making progress, but these are disheartening. Especially after the entire day has been good. We had a day recently where Gabriel FINALLY seemed totally himself (first time since March) then a drop seizure hit and he has been that good since.

THE BEAUTIFUL HOUSE!
We had 2 amazing women come clean our house today. They were here for 7 hours! They literally cleaned everything…from under the beds to the ceiling fans (they even super shined Gabriel’s potty chairs)! Gabriel ran from room to room saying  “Now let’s look at mommy’s room, now let’s look at Gabriel’s room”, etc.  I love that he picked up on my excitement!

Hello floors! I am currently soaking up every clean moment while the boys are sleeping 🙂

I was so impressed with the fact that even the magnet letters were lined up and organized.

Gabriel had a different opinion and took about 5 seconds to “rearrange” them to his liking. Sigh. After throwing the magnets on the ground he said “They go in time out on top of the refrigerator”.

It has been a few days since I have been able to update the blog.It has been a busy week trying to have fun in the good moments, rest in the bad and keep up with all the diet changes.

I would have that we have been having c+/ b- days this weeks. We will have several awesome hours, then several bad hours. He had one big 4 minute seizure on Thursday night but bounced back from it fairly quickly.  Gabriel’s ketones have been all over the place. They will be the highest possible, which is good, and then 3 hours later they will be between moderate and small, not good, then 3 hours later high again.  We are pretty sure the ketone issues explain the seizures.

We weighed Gabriel this week and he has gained 1 1/2 lbs in the last couple weeks.  Which is too much. We think that he is getting too many calories. So we are going to cut his  snacks by 50 calories a day this week.

We change ratios on the ketogentic diet again this week to 3:75:1 then next week to 4:1.   It is difficult to tell if things are getting better with the changes yet.

One of the benefits of 4:1 ratio will be more menu options. There are several books written at this ratio, including  “chicken nuggets”. We had our first success with him eating cream this week. I whipped it up with a tiny amount of peanut butter then chilled it. He ate every last bite 🙂 We also found a peanut butter flavor we can use that has no calories, carbs or sugars to order online.

We are so thankful for a really good discussion with one of the nurses at the hospital. She was able to cut through some miscommunication problems we have been having about Gabriel’s vitamins, recipes and calories to get some clear answers. One of those answers included a “Yes” to Scooby Doo vitamins! There is 1 sugar free children’s vitamins that Keto Kids are allowed to have and we got cleared it give them to G. He really likes them. It seems like a treat to him for now! We are glad because getting his vitamin supplements in him has not been going well. We still have some we have to hide in food but not as much.

Quick Update: The ratio change seems to be going ok. Gabriel has had not had any grand mal seizures in several days. He has had at least 1 head drop everyday since Friday. Today was both the best and the worst day we have had since the diet change on Friday.

Gabriel and I had so much fun this morning: playing in water outside, making glue/paint projects, swinging and playing Ipad. We’ve had the Ipad for several months but G has just developed a LOVE for it the last few days. I try very hard to limit his media in take but all bets are off right now….especially when we are changing something. I figure his motor and verbal skills are impaired so I am going to give him every enjoyment that is safe.

After naptime he had a couple head drops. Then between when Chuck got home and bedtime he had several more including 2 falls. 🙁 He fell straight on his back one time and bonked his head pretty bad. After the fall we put his helmet on. Chuck and I put our helmets too. I really want to get a picture of the 3 of us in our helmets. I know think of days in turns of “helmet days” and “non-helmet days”

On a positive note, I was able to successfully administer Gabriel’s medication by myself today! I have been lucky to have someone available to help everyday until today. Needless to say I was very concerned about it, but we found a new trick to get his mouth open and it worked brilliantly!

Hoping tomorrow is a non-helmet day. 🙂

Chuck and I have been blessed and overwhelmed by the support we are recieving! Please know that every facebook comment, package of Jell-o, gift card, hug, playdate touch our hearts and warm our souls. Especially, as we read the doose syndrome and ketogentic online support group boards. We have friends and family helping us make meals for Gabriel and show care and concern for Chuck and I as well. Thank you! Thank you! Thank you!

This blog is dedicated to a few specific things that I remembered to get pictures of….please know that every gesture is equally valued and being recorded for Gabriel to know about as he gets older.

We received this beautiful prayer blanket from a seminary friend this week.

I love this picture because it shows a common and natural moment in our lives. Gabriel wants us to hold his hand while he goes to sleep. He also LOVES blankies,so it was especially touching that he started requesting his prayer blankie right away.

Another kind family passed along this super cool Gator that their kids had outgrown.

I would be forever regretful if I didn’t take to time to give a HUGE public thank you to Chuck’s Mom. She literally left her entire life behind for over 3 weeks with the sole purpose of helping us! You name it….she did it—dishes, laundry, yardwork, liter pan duty, babysitting, late night emergency runs to Wendy’s for Frosty’s. She would literally sit in Gabriel’s room on seizure watch while Chuck and I learned to cook his meals. She earned the title “Miss Grandma” at preschool because anytime Gabriel went to school she was with him every second. She made sure he got his snacks, and helped his teachers learned to care for him as well as play with the other kids. She played outside with him everyday and passed on a love for gardening.

Early during her visit he learned how to plant and water.

In the middle of her visit he learned about trimming trees and breaking down limbs.  Grandma used trimmers and Gabriel used his hands.

Near the end of Grandma’s visit we potted this flower and G knew just what to do.

We have had some set backs this week with several small seizures and a couple big ones. The doctors plan is to change Gabriel’s diet each week of the next 3 weeks and get his diet up to a 4:1:1 ratio (which means 4 units of fat for every 1 unit of protein and 1 unit of “sugar”–sugar being the natural juice of an apple).  The long and short of this means more fat…butter, oil and cream.  Chuck has been doing a lot of research and believes that this ratio is the BEST for a doose kid. We are excited to have the opportunity to give our little man the BEST shot at Seizure freedom!