Today began with the victory of a new meal Gabriel will eat!  Chuck worked with me last night, as I channeled my inner Rachel Ray, to create a pecan, applesauce waffle for our little guy. The applesauce waffle makes 4 meals that he will eat! So far, we have eggs and cheese, Keto Pizza, Keto Blueberry Pancakes and Pecan, Applesause Waffles.

We used applesauce, cream, eggs, pecans and a few other ingredients to make something a little bit sweet and CRUNCHY for him! I can tell he is really missing crunch and specifically toast. He asks me everyday for bread or toast and mac-n-cheese. (We think we may have a solution to the mac-n-cheese arriving from Amazon on Tuesday).

Showing off the beautiful creation. It actually looks like a waffle! (Notice him sitting in his chair behind me. He runs and jumps up there every time he thinks he might get food).

Chowing down the waffle! No time to stop and smile! The cup on the side, is filled win an AMAZING chocolate whipped cream sauce, that he would not touch! We are putting extra cream, in some form, on his tray at every meal.  My hope is at some point he will try and like something!

The agony of defeat portion of the day came when Gabriel had a 3 minute seizure that began while he was sitting in his chair after dinner. Chuck ran out to the garage for a second to grab something and came back to him seizing.  Seconds before he had been chatting with his Grandma Gaye, who was in the next room. That is how fast and without warning they happen.  He has had other seizures this week but this was the first time he had one in the afternoon in the quite a while. Sometimes the sets back feel small sometimes really big. Tonight felt like a big one.

We are trying to focus on the VICTORIES! I was chatting with a friend on the phone today and she challenged me to write down the victories. No matter how small, write them down and post them somewhere right in our faces. I am totally doing it! Our victories for today are a new meal, and a fun night checking out train displays at the mall.

Anyone else struggling with focusing on the defeats? Want to join me in focusing on and celebrating the victories?

I never imagined there would be a time when I would miss taking Gabriel to the grocery store with me. Let’s face it grocery shopping with a young child can be time consuming, chaotic and exhausting.

I ran into Hy-vee to get tomatoes for Chuck and suddenly found myself very sad. This local store offers free cookies to kids. It has been a favorite routine of G and I go to grocery shopping here. He was always in a good and silly mood while munching on his cookie. We would sing silly songs while walking down the aisles, he would ask me to spin him around in the circles in the cart, or give the cart a huge push and let go.

We have been able to avoid foods he is not allowed to have so far. I know the time is coming when we will have to say no to cookies, chips, cake, ice cream and all other foods that he might see while we are out and about. I know it  just food, but it makes me sad that his brain doesn’t work right, and because of this he is going to feel excluded and sad.

Several times a day we check Gabriel’s ketone levels. We do this to make sure he is in ketotisis. This the state at which the brain fuels itself with fat not carbs or sugars.  His entire diet is based on keeping him in this state while giving him just enough calories to grow. Right now he is eating 4 meals of 263 calories each.

We place cotton balls in his diaper to absorb the urine. Then after he is gone potty we use a ketostix (small strip between box and bottle) to test the urine.

We squeeze the cotton ball on the strip and hope for the darkest colors. This means his ketones are “large”, where we want them to be.

This is the test result we wanted.

Until today we have had success with ketone levels. Gabriel had 2 sticks show moderate to large instead of large today. We are keeping a log of everything he is eating so we will watch tomorrow and see if tweaking things a little for the next couple days fixes this.

He has had a couple seizures the last couple days, which is of course disappointing. We know this was to be expected. The nutritionist have reminded us we are aiming for seizure reduction with the diet. The more freedom from seizures the better. He had a really great day on Sunday, which is almost always an indicator that a seizure will come the next day. Super stupid huh? 🙂  Big sigh!

The upside is that he seems to be recovering from the seizures faster. Previously, if he had a 4 minute seizure like he did today, he would have slept for about an hour then been pretty out of it for quite a while. Today he rested for a while, then took a nap,and then was ready to play a little. The most exciting for me was that he was able to speak clearly right away today.

Chuck is  quickly becoming a keto culinary genius! He is researching and creating (with the help of our online recipe creator, Keto Calculator) some of Gabriel’s favorites! Last night he experimented with 2 pizza recipes deciding on one made with a crust of pureed Macademia nuts,  whipped egg whites and mayonnaise.  If you know Chuck very well you realize this is an incredible labor of love because Chuck HATES mayonnaise. I could right an entire blog post on his dislike of mayo.

Gabriel loved the pizza. After pizza success Chuck tried blueberry pancakes today. They were equally successful. ( I wanted to put the videos of eating these on the blog but it was more detailed than I have time for right now. I will put them on facebook for those of you on facebook.)

We are very excited to be finding foods that he enjoys, are yummy and familiar! The recipes take a lot of work because each ingredient has to be perfectly measured to the gram and only make 1 serving. We are planning on spending time each weekend learning new recipes and trying to find ways to freeze and do other prep ahead things.

I am currently snacking on a random snack pack of M&M’s I found in my car. We are making sure to eliminate all of his favorites from the house and cars.  Eating has a been a bit challenge for me. I am committed to not eat anything in front of Gabriel that he can’t eat and I can’t eat what he is eating. I have been able to leave the house for a short time everyday and sneak things like my favorite Wendy’s salad and zone bars. I literally ate a ham sandwich in the bathroom yesterday! I keep joking that I am either going gain 30 lbs from late night noshing or loose 30 lbs from lack of food. It is all worth for our little man though!

Cheers to a seizure free weekend!

We are honored and blessed at all of the offers for help. This post is our answer to requests for our specific needs. Thank you to everyone who already have been praying for us, sent us cards, made us meals, mowed our lawn.  You have enabled us to care for and love our baby better.

FOOD:
(Many Recipes are brand specific so if you see a brand name it has to be that brand)
Unsalted Butter
Jell-O Brand Sugar Free Prepared Jell-O cups
Oscar Mayer Bacon
Macademia Nuts (staple of many recipes)

(all of the other foods we need are easily perishable or require detailed explanations of packaging and label reading).

Other:
Cotton make up remover pads. (We put these in his diaper to test his urine for ketones).

Size 4 Pampers Diapers. (We are officially putting off potty training for a while)

Treats for Mom and Dad:
Wendy’s gift cards
Starbucks gift cards

General needs:
Quick Trip Gas Cards (We received one in the mail and it literally made me cry!) We are doing lots of extra driving between doctor, hospital visits and last minute trips to various stores for supplies

Walmart gift cards. (Thankfully the majority of Gabriels’ staple foods are available for purchase at Walmart)

We are doing A LOT of spelling lately. M-E-D-I-C-I-N-E……B-E-D…..D-O-C-T-O-R are just a few of the commonly spelled words. While chatting with a friend on the phone today I spelled W-E-N-D-Y’S, but forget to spell french fries! It shouldn’t have mattered because G was alseep on the bed next to me. About a minute later he sat up and asked “I have frenchies (his word for french fries)?” UGH! Parent fail. I just said “No frenchies” he laid back down and fell back to sleep.

Here is another food conversation from today:

G:”Can I have some Mac-E-Roni?”

Me: “We don’t have any. It’s all gone”

G: “You go to the store and buy it?”

Me:”the store doesn’t have any either”

Silenece. A few minutes later to himself : “I need mac-E-Roni”

About 20 minutes later  he finally said yes to something we could offer….eggs. I think he only had about 50% of the calories we are hoping for today. At least he finally ate.

He slept most of the day, threw up his crystal light this morning, had some problems speaking for a while, did not go to sleep for the night until 10:30, but he did get to play with Nonna and Papa, go on a bike ride with Daddy, giggle LOTS with Mommy. Most importantly he did NOT have any seizures today!

Y-I-P-P-E-E!!!!!!!!!!!!!!!!!!!!!

We are home. My mom is spending the night with us tonight and will help out tomorrow morning and my dad is coming tomorrow afternoon. Chuck’s mom is coming up from Texas on Saturday to stay for a while and help us out. We are so blessed to have amazing family to help us out.

I have at least 10 blogs entries in my head right now but I am going to keep it short and sweet…..Gabriel finally finished an entire meal tonight! 🙂 First meal of the day he completed. Since eating every last bite is incredibly important we are celebrating the small victories!

Gabriels blood sugar levels are down and his ketone levels are up. Both are good things in our upside down little world. With his blood sugar’s down it means his brain is producing ketones (meaning the brain is burning fat).

We met with the nutritionist today. There were several pieces of good news. We are going to have a lot of support in creating menus. Each meal with be the same ratio and the same calories so we can have some flexibility as we are learning. Gabriel can drink as much water as he wants as well as sugar free, caffeine free drinks like vitamin water zero and crystal light. The approach is very much learn as you go. Keep trying new things until they work and track result. We have been in charge of measuring out and serving all of his meals while here. The reality that we are going to do this at home is a little overwhelming and not too bad at the same time.

He had several seizures today. One while they were trying to replace his IV line. After several tries they finally decided to wait for the transport team. The transport team on the people who work on patients in the helicopters and ambulances. They are the best of the best at getting lines started and had success with his line.

He has started having a new kind of seizure where he looses consciousness very quickly, falls to the ground and comes right back to consciousness. These are very scary because they are so fast. We are keeping eagle eyes on him right now. He has had 3 and each time he seems emotional and cries for about 30 minutes after them. His doctor said this is not uncommon because the diet change takes a huge toll on the body.

Whew!That was today on the roller coaster ride of our lives.  I have to say that after 2 month of extreme dips, turns and loop the loops today has been more of kiddie coaster.

Gabriel is still doing well eating his Keto Meals.  Who doesn’t like bacon 🙂  Today we start the education classes learning how to do everything Keto.  Last night was a little rough, he didn’t drink the cream that his medications were in at lunch and as a result we had a return of the head drops that the clorazapate had pretty much taken care of.  Were still seeing them this morning.  We are praying that with a return to his medication they will once again go away. 

Gabriel gets a sticker everytime they have to prick and test his blood sugar levels (before each meal). He loves the stickers and wants them to wear them immediately.

Gabriel has had his first 2 meals. He did a great job eating all of the food both times. The first time we tried mixing some medicine into the cream and he figured it out quickly and refused to drink it. The second meal we put 1 drop of stevia and tiny pinch of sugar free chocolate pudding in it and he loved it! Drank it down super fast.

They are easing him into the diet over 3 days. Today he has been eating at  a 1:1 ratio. Meaning for every unit of fat he is having 1 unit of protein and 1 unit of carb. Tomorrow will be 2:1 2 fat to 1 protein and 1 carb then next day will be 3:1.

This was his first meal. Mayonaise (2 take out packages); Chicken breast (about 1 1/2 ounces); about 3 ounces of heavy cream; and TONS of berries! Blueberries (1 cup) and strawberries (1 1/4 cup)

Second meal: 1/2 slice of American cheese, same about of ham. 3/4 a banana, 3 ounces of heavy cream and About an ounce of canola oil. Yes the canola oil came in it’s own container. Like a side dish! I dredged the ham in the oil, then poured a little in the cream, then told him it was dip for his banana. He willingly dipped every bite of banana in the oil.