As of 11 p.m. Monday night Gabriel is 1 week with no seizures! Yippee!

The week was filled with family time and lots of fun. He went to his first neuro psychologist visit Monday morning. It was a lot of questions for Mommy and Daddy and some fun play type activities for Gabriel. Chuck and I will go back in a couple weeks to learn the ideas and purposed plan of action.

Chuck was working on hospital bills last night when he discovered that some very expensive genetic tests our doctors ordered were denied by insurance as unnecessary. Ugh! So today, we will start making calls and “figuring it out”. These tests could help better determine what type of doose we are dealing with…specifically if he has a chance to out grow this or not. Our understanding was that Gabriels treatment plan could vary based on these results.

We have been waiting on these results for months now and it was frustrating to find out that the test results are clearly available and we haven’t been notified. AND then on top of it the frustration and financial implications of possibly having to pay the bill are overwhelming. God has been with us and directed every step in his journey so far, and at this moment I am seeking to stay calm and trust it will all work.

I keep thinking of the 90’s pop song… I get knocked down, but I get up again, you’re never gonna keep me down. (Sorry to anyone who knows this song and now has it stuck in their head). We have learned another important lesson to get everything checked and run through insurance first. Annoying and time consuming but clearly necessary.

In the long run we really are O.K….truly in the grand scheme of things we are good. While in the waiting room yesterday I found myself remembering to be thankful for how well Gabriel is doing. My guess would be that a handful of parents waiting with me watched Gabriel playing and wished their child was able to play that well, speak that much, be that healthy.

Today we are asking for prayer for
1. Continued seizure freedom
2. A quick and complete resolution of this blood test bill.

I have been able to add a few new things to Gabriel’s food repertoire now that he is officially staying on the 4:1 ratio.  We have had Hits, Misses and Epic Fails along the way. I am still learning that he is not emotionally invested in my cooking experiments, nor is it his job to respond to the food I am presenting in a way to make me happy.

HIT:DONUTS!

We have added donuts. Right now he only likes then fresh. So he doesn’t get them a lot because when he is ready to eat, he wants to eat NOW! I like them because they look like real food, I can put flavor in them (chocolate, cherry, vanilla) and it looks like a lot of food.  Most of his meals barely fill a saucer.

MISS: Full cream “Ice cream”

We tried another full cream “ice cream” with splenda and vanilla. He took about 3 bites to make Papa happy but that was it. I am going to try another version with whole milk and cream. It will have to be a snack, instead a meal addition that allows him more “normal” food.  I have recipes for things like “grilled cheese” and “chicken nuggets” that I really want to try but I have to get him to eat the cream to make that possible. I keep reminding myself that I am the only one obsessed with getting him to eat cream and try to let it go.

EPIC FAIL: Cheese crackers (Try #1)

Doesn’t that look appetizing? These black blobs where butter, cheddar cheese, coconut flour and oil.  I found a 3.5:1 cheese cracker recipe on a blog and tried to tweak it to 4:1.  The worst part was that these 7 quarter sized blobs took almost 45 to create. SIGH!

COOKING SUCCESS:  Cheese crackers (Try #2)

Woo! Hoo! They are not burned blobs! They may not be totally beautiful. But in the land of Keto Cooking anything that stays together with 800 pounds of oil is a success.  After a little research I substituted 1/2 of the butter for mayo, removed the oil and cut the cooking time in 1/2. The recipe still needs some tweaking but they looked and smelled good. I took a bite of one crumb and they were good too..kind of buttery, sweet with a cheesy flavor! I could not wait for Gabriel to try them!

FAIL:Eating of cheese cracker

Not sure if you can tell from the picture but he has a  “what on earth are you trying to get me to eat” look on his face.   Hindsight is telling me I made several mistakes in presenting this new food.

1. I gave it to him first thing this morning. (He likes routine..breakfast is either eggs, waffle, or peanut butter and fruit)
2. I told him it was cheese crackers. I am pretty sure he thought I was going to give him his old favorite Cheez-its.
3. I tried to feed it to him instead of letting him hold it himself. They are very crumbly and I knew he would not like that.

Once I had tried to feed him it was all over. He started crying and flinging his arms. We ended up with lots of cracker pieces.  This caused him to cry harder and demand “Fix it! Fix it!” Sigh! The cracker pieces ended up on the kitchen table, we are going to try them again later.

SEIZURE UPDATE:

We continue to make progress on the seizure front. He is down to 1-3 grand mal seizures every 5 or 6 days. We are also getting a little heads up that they are coming. At least earlier this week, he had a really sleepy, out of it day before the seizure late that night.  The “big” goal in my mind right now in 0 seizures in 10 days. However, as I read back over my blog posts from the last months I am amazed at how far we have come on the new 4:1 ratio.

We haven’t seen the drop seizures, where he bobs his head or he just falls down in several weeks 🙂  Yippee! Chuck and I hate all of his seizures but the drop seizures are so unnerving because they are so quick, and he falls hard and fast with them. I don’t think we have had to wear his helmet in several weeks! We have been hitting the pool A LOT lately and I know that would not have been the case a month ago!

The bible verse speaking to me lately is from Zephaniah

“The Lord your God with you, He is mighty to save. He take great delight in you. He will rejoice over you with singing”

I wanted to share a touching blog our photographer posted with awesome new pictures from a photo shoot with Chuck’s parents.

http://www.facesyoulove.com/2012/06/25/amazing-strength/

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.