We are the middle of a run here and there and everywhere week at our house. Chuck started both taking and teaching classes as KU, as well as, his job at the church. Gabriel and I have been spending lots of time at the church as I am working extra hours this week getting ready for preschool to start next Tuesday.

The highlight of my week was when Gabriel joined me in leading devotion for my fellow teachers. I had walked to the front of the room and the next thing I knew he was with me.  Since, we are a preschool staff, I started devotion by singing “This is the Day” while I was singing, my sweet boy, literally jumped unto the stage behind me and started dancing and singing along. Then he insisted we sing the song a 2nd time. In and of itself this was a wonderful and touching moment to be his Mommy . As I was standing there I just keep thinking what a long way we have come. The last time I had been with my fellow teachers was in May. Back then, before we had a good amount of control over the seizures, Gabriel could not have stood up there and danced with me.

We have had several seizure free days recently…I think 8. I intentionally stopped counting so closely because I was getting too caught up in the ups and downs. I am pretty sure, he just had a very small one in his sleep. Small, and quick enough, that if I were not right next to him, we would have never known….but it did happen. So we have to count it…but I am calling it a little blip and hoping it is only one…..and I am remembering “This is the Day that the Lord has made.”

Last night my folks came over to help me get ready for heading back to work this week. Papa played with Gabriel, while Mom and I cooked.

I feel like it has taken me all summer to learn the diet and the recipes, as well as, what I  can have others help me with versus what I need to do on my own.

These are the  some”starter” ingredient for his chocolate heart candies, waffles and Jell-o Puffs. Gabriel was in a very cooperative mood, so I had everything measured and ready to go before my help arrived.

Finished product! 6 waffles, 4 servings of chocolate hearts, 7 Jell-O Puffs and 9 Cheese Crackers. When I add this to the  pizzas that our Pizza Angels made for us, I will only have to make 2 meals a day for the next week and 1/2!

“Take my picture Mommy, I saying Cheese” Of course Gabriel wanted to be the pictures too!

Oh..and several days without seizures 🙂

In the last few days, something has fundamentally shifted in my internal thinking and emotional status. I’m not exactly sure how the shift happened but it has happened and it is good! I feel a sense of calm or peace, as well as, an extra rootedness.Don’t get me wrong we still have our ups and downs but I am not as effected by them.  When the good days come I am just truly thankful for the good, when the bad days come I think “bummer” and move on.

Gabriel has had 2 really, really good days in row. We went to the sprayground and he played and ran and kept up with the other kids. He wasn’t totally zapped by heat either. It was wonderful to watch him in action from a distance (20 feet), instead of diligently standing within reaching distance.

We also met with his teachers to help prepare for his school year. It was so nice to see him back in the preschool setting especially on a day when he was pretty coordinated.

I am still working getting Gabriel’s menu’s and foods adjusted to the new diet tweaks but the 4 meals and 2 snacks seems to be a good system for him. I think getting the calories spread out over the day is the key for a good energy level and it seems to be keeping the seizures at bay.

It has been pretty fun to write down 0 under seizures in his book the last 2 days.

Gabriel has thoroughly enjoyed the last few days. A dump truck came to his house AND dumped not 1 but 2 huge piles of dirt on his lawn! (I hate that our laptop with the photo card reader is not working because I got some great pictures.)

The grown up reason for the dirt was not quite so exciting. The excessive heat from the last 2 years has left the dry ground receding around the base of our home. Thus, leaving the foundation in possible danger. So, with the help of my parents, sister Lisa, brother in law Jeff, and 19 month old niece Lydia, Gabriel and I attacked the mountains of dirt and firmed up the foundation on our home and readied the lawn for some much needed TLC.

Seems in some ways we are going back to the foundations of Gabriel’s health at the same time.  We have a handful of new meal and snack recipes that fit in the new calorie plan. The diet continues to baffle me with its complexity. Normally, with a recipe you could just do some math and cut it down by a certain number of calories but that is not the case  with the ketogenic diet because of protein and carb levels.  I don’t completely understand why…even though Chuck does and has explained it to me multiple times.  For now I am happy to have enough recipes  to start feeding him the 4 meals and 2 snacks correctly. We have been cobbling together already made meals to hit his calorie requirements this week.

He seems to be doing well. He didn’t have any seizures that we saw today.  Even though we had someone within feet of him at all times, we are working hard and engaged in what we were doing, so there is a chance we missed something…but I don’t think so 🙂

Glad for a good fun filled day for our boy!

Well….we had the doctors visit today. Not surprisingly, we did not get any answers…the plan is to tweak the diet some more. The doctor thinks is it promising that the seizures are less than they were when we started the diet. We are still hoping and shooting for seizure freedom not just reduction.

We are going to move from 3 meals and 2 snacks, to 4 meals and 2 snacks, with the same about calories. The hope is that the steady flow of calories will keep him Ketosis. If the meal tweaking doesn’t work we have plans to try changing a couple medications around and see what happens.

Today he only had 2 of this new types of seizures but for the most part had a great day!

I have been thinking about Gabriel’s first seizure a lot the last couple weeks. Amazed, that it has been six months since Super Bowl Sunday. That day is forever etched in my mind. Gabriel was holding a purple dry erase marker and standing by his easel when he called out “Mommy”, fell on his bottom, tried to stand back up, then fell down again shaking. What I would give for the first prognosis of ” just a febrile seizure, nothing to worry about, may never happen again” to have been true.

The last couple days have proven, once again, that we are in the fact fighting, “The Beast” that is doose syndrome. G has been having tonic clonic seizures (grand mal) every morning around 6 for the last 4 nights, last night he had one of the worst we have seen in months at 3 a.m and it was 5 minutes long.  Today he had tonic clonic, and small drops as well 2 seizures with small tremors during which he seemed to have some awareness. He also had a few seconds where his speech was gone (this is one the hardest things for us, especially his daddy) It is quite disheartening after a long good streak to be back to what feels like square one.

We have his 3 month diet follow up appointment on Wednesday. A month ago we were very optimistic that we would be totally seizure free by now and get to start pulling meds. Now we have no idea where things are going or what the next line of treatment will be. Gabriel continues to be a very reluctant eater this week. We had to syringe butter again a few days when he ate only the cheese portion of his meal.

When I wrote the title for this blog a song called  “healing begins” popped into my head. So Looked up the lyrics:

This is where the healing begins, oh
This is where the healing starts
When you come to where you’re broken within
The light meets the dark
The light meets the dark

Not that Chuck and I haven’t both been totally broken within 100 times during this process, but this particular set back is hitting us really hard. It is not just a physical healing I am praying for. I am praying for a healing of my broken heart, my husbands broken heart and my precious baby’s brain (being a child his heart still seems about perfect!).

Here is a youtube link to the song for anyone interested (thanks again for joining in  this blog ride that functions as a form of therapy for me).

http://www.youtube.com/watch?v=SpjUIq7ahrQ

While, 4 is a fairly low number, it is our favorite number today. Gabriel is currently 4 days seizure free! We are especially thankful because he has been a very resistant eater the last couple days. He only ate about 800 calories today and he is supposed to have 1050 (Isn’t it ridiculous that i know the number of calories my 3 year old ate?)

Like many families, we are gearing up for school to start. This fall, Chuck will teaching as a graduate teaching assistant and taking classes at KU, I will be teaching preschool 2 days a week and Gabriel will be going to preschool 3 days a week. We are all excited about the upcoming year.

We finally started potty training this week and G is rocking it! So far we haven’t left the house without a pull up but we have several weeks before school starts, and I think we’ll be good.

I keep trying new snacks for Gabriel to take to school. His school is nut free and finding Keto snacks without nuts is very tricky. He has been asking for cookies for weeks, I finally made him some and he wouldn’t touch them. Bummer! Hoping he will be more willing to try other new things soon.

We have an appointment with his epilespilogist next week and are hoping to his speech, physical and occupational therapies scheduled soon. I am slowly but surely learning how to manage the flow of parenting a child with special needs.

Ugh! I hate to write this post because the last post was so happy….but life has ups and downs. Gabriel make it 9 days and 18 hours between seizures. He had one small drop seizure late Friday morning and a 4 minute grand mal (tonic clonic) early this morning 🙁 Super Bummer. We are staying optimistic and hoping the changes we made before vacation kick back in.

In happy news we had started potty training before the seizure on Friday (I kept waiting until he had a good seizure free stretch to start this new possible stress-or) and he is doing great! He gets a prize everytime he is successful. In 3 days he has earned 14 prizes! I am excited to go to the Dollar Store tomorrow and restock the prize box!

Our computer got infected by a virus before vacation, so we have been dealing with hacked bank accounts and rebooting the laptop so I have not been able to blog as much. Once the laptop is up and running I will write a blog about what we think may been causing the issues. (hee hee teaser!)