The last few weeks have been busier than ever around our house! Gabriel’s Ketogenic diet wean is going very well. He is really enjoying getting to try more and more foods. His current favorite is deli ham. He LOVES it! So cute. It is a very simple pleasure. I love watching him get to enjoy everyday food.

My favorite new meal for him is this one because he gets to eat a whole piece of cheese! I felt like a genius when I used our ketocalculator program to make a meal with the right ratios and calories that involved getitng to use 1 pre made unit! He is also enjoying pepperoni a lot. This is also exciting because in a few weeks he can eat pepperoni all by itself as it is 2.5:1 by itself.

This was his favorite meal too until he found ham.

This week we had parent/teacher conferences at school, an appointment with a very specialized behavioral/neuro psycharist and a sleep study.

The parent/teacher conferences went great. It was really good to hear the reports of how much better he is doing in school. He has the energy to participate, is making great improvement in social interaction, speech and large motor skills. He has surprised his teachers with how much he knows academically.

He continues to struggle with attention and answering direct questions . He has always seemed to be this way but it has gotten dramatically worse since the seizures started. The inattention is one of the many things the behavioral/neuro specialist is testing for and working with us on. He has trouble focusing long enough even to do very simple tasks like climbing into the car without getting distracted. The behavior/neuro specialist said his impulsiveness to touch everything and distractness is similar to what you expect in an 18 month old. It was so to hear this but totally true to what I am dealing with. a 4 1/2 year old body with the lack of understanding of safe/not safe; touch/don’t touch is VERY challenging. These behaviors seem to escalate whenever we are changing meds or diet. At the same time his speech is SO much better, he is playing on his own for up to 10 minutes now, he will sit and read books with me and is FINALLY practicing drinking like a big boy. It has been LOTS of emotional ups and downs for all of us!

In the midst of the diet and behavior changes part of our brand new floors have been ruined by a new dishwasher that was installed inproperly and leaked ;( We were without a dishwasher for several days. Between this floor mess and the last one I have realized not having a functioning kitchen stresses me out more than anything else. In our world the kitchen really is the heart of the home. A couple days after the new dishwasher was installed correctly, 2 large water stains appeared on the kitchen ceiling. Small problem with a bathtub upstairs cause 2 large water stains on kitchen ceiling. Bathtub repaired but now we have an access hole in our ceiling and some big water stains that need repaired OYVAY! 🙂 The warped floors and hole in the ceiling just look bad…at least the kitchen is functioning! Right now I am hoping the diet wean continues to go well and quickly so we can hold off the repairs until we can just eat out while the kitchen is being worked.

I am continually and overwhelmingly thankful that the seizures are staying away.  I think we are at almost 8 months! There was a full moon this week. Last year at this time a full moon meant 2 to 3 days of constant small shakey seizures, loss of muscle control and speech. PRAISE God that is not our reality anyway.  It is nice to look at a full moon and think how beautiful it is.

Adjustment is the word of the day! Diet adjustment, behavior adjustment, sleep adjustment, mommy needs a chiropractor adjustment 🙂

DIET ADJUSTMENT.
We are excited that Gabriel is getting to wean the ketogentic diet. The process is going to involve the same amount of work preparing his meticiuos meals and is providing the added challenge of learning new recipes with each ratio change. With the ratio change we are getting to pull out some fat and add in some protein and “sugars”. I have a lot of people ask if that means we can add a new food one at a time and sadly it is more complicated than that 🙂

I think I finally realized that best way to describe the keto diet, is that each and every meal/snack is a recipe that has to be followed exactly. Like when you are baking cookies, every ingredient has to be in the right proportion or they won’t turn out. It isn’t
food groups and general calories but the EXACT right amount of E VERY ingredient for every meal.

I got to add 11 grams of apples to his waffle meal earlier this week! To add apple into his meal, I had to change the gram measurements on all of the ingredients in his waffle. I had some waffles previously made but he could not eat the apple with those waffles because they messed up the recipe. He is loving the apples…the added challenge is making sure he eats every bite of the waffles so he doesn’t get too many “sugars”.

BEHAVIOR ADJUSTMENT
The eating leads perfectly into this section. Each time we change a medicine or his diet ratio, serious behavior issue pop up. I am sure it is body being overwhelmed but it is so difficult. He gets overly tired and overly agitated very easily. He reverts to 2 year old type temper issues, just today I had to carrying him out of two separate public places while he was screaming. It is so frustrating and embarrassing. I really dislike parenting through these same issues over and over again. It gets harder and harder each time because he is getting bigger and stronger. Sigh. I am thankful to know from past experience that the extremes pass after his body adjusts but it is still tough.

On the up side he is having a great mornings. Lately he has been very sleepy and kind of out of it in the morning. Now he is waking up, interactive and playing in fun and complex ways. He came to school with me today and actually responded back to a few people who said HI to him. It took him quite a while and it was very quietly but still a great big hurdle! So exciting to see him in engaging in social cues and using socially appropriate behaviors ;)–again things he knew before but lost…so glad to see him relearning or reengaging that knowledge :

SLEEPING ADJUSTMENTS
Sleep continues to be very sporatic. Some days he needs a nap, somedays he doesn’t. Last night he fell asleep suddenly on the kitchen floor at 6:00 p.m.  He still wakes up in the middle of the night a couple days a week. It has been almost 2 years since we have slept through the night for more than 2 or 3 nights in a row.

Chuck has observed some sleeping twitches and strange patterns over the last several weeks as well that have him concerned. Chuck is really good at researching and noticing changes in patterns.  We have consultation with the sleep clinic in a couple weeks. Hopefully that will help us find some answers.

MORE IMPORTANT THAN ALL THE ADJUSTMENTS:

7 MONTHS WITHOUT A SEIZURE!

We had our appointment with Gabriel’s specialist yesterday and it went well. The doctor agreed to let us wean the diet. He was clear that it would not be his first choice but he understood why we wanted to try. The doctor did a good job in making sure we understood all the factors in play. The nutritionist will now work on lower ratio meals/snacks for us to start preparing for Gabriel. The wean will be very slow and steady…..It seems like it will take several weeks (10-12) or even more. Right now Gabriel is on 4:1, next will be 3.75:1 for 2 weeks, then if everything is successful we will go to 3.50:1 for 2 weeks, etc. I don’t totally understand how long we do that process but we will take it one step at a time. I would have loved to have a simple countdown calendar but that isn’t going to happen. It is going to be one day at a time, hoping and praying for the best and “figuring it out” as we go. Thankful for continued and support and direction from his neurology team. We are also very glad that our visit went well and the doctor agreed to let us try this. We could be totally wrong in asking for this….only time will tell. TOTALLY nerve wracking! It is terrifying to think seizures could be right around the corner again because of our choices. On the flip side so EXCITING! We will know for sure if he needs the diet or not and if he doesn’t cooking and food issues will be so much easier 🙂

I continue to see God’s hand at work in our lives. Today I am hopeful for Gabriel’s future 🙂

We got to celebrate Grandpa Frank’s (Chuck’s dad) 80th birthday this weekend. Gabriel was very excited about having a “Happy Birthday Party” for Grandpa. Gabriel talked all day about Grandpa’s cake and his candles. When the cake arrived Gabriel was very interested in it. He kept looking at it and asking questions.

He was so anxious to help in anyway we would let him. He helped put the candles on the cake and blow them out.

Not once did our sweet boy try to sneak a bite of the cake. I was so proud of him. It was clear he was obsessed with the cake but followed the “rules” for his eating perfectly. The whole evening I kept thinking. This maybe the last time he has to watch someone eat birthday cake and have to eat something different! I am soooo hoping and praying that is true! Our appointment with his epilepsy specialist is tomorrow morning. It has seemed the longest couple weeks waiting for this appointment. We are hopeful that the team is ready with diet wean plan for us.

The last time Gabriel got to eat birthday cake was on his 3rd birthday (I think)

He was so proud of his Green/Blue M&M 3 cake! Nonna (Amy’s Mom) made him exactly what he has asked for! (it is strange thinking back, his reaction was similar to his reaction to Grandpa’s cake this week…he just LOVES to look at and talk about Birthday cakes!)

We spent his 3rd birthday in the hospital, right when the seizures started. They did a great job making it a special and fun day for Gabriel.

He loved his Thomas train set, his balloons and his Chocolate cake. Tomorrow feels like a big occasion. Getting a chance to see if his body can stay seizure free off the diet will be an occasion to celebrate and remember.  My hope and prayer is that we will be able to have a successful/seizure free diet wean and includes eating CAKE!

I realized I left out a very important detail from the last post. We won’t start weaning the diet until we have the medical support to do so. All of Gabriel’s meals are created or reviewed by dieticians on his medical team. We will need their assistance in knowing how to safely feed Gabriel while we wean from the ketogentic diet.

Chuck came up with the title for this post and I think it is perfect! We (Chuck and I) have officially decided it is time to start weaning the diet.  As of tomorrow Gabriel will be 6 months seizure free! YIPPEE!

We have come to this decision for a variety of reasons. Mainly, we want/need to know if the diet is doing anything or not. We are pretty sure it is not. We have been in touch with the Dr. we saw at John Hopkins last November.  He said back in June that he would start weaning the diet (And he literally wrote the book on the diet). Our doctor here was not at all in favor of weaning the diet at that time. So we followed the course our doctor here recommended and weaned a medication. SO glad we did! Great to see Gabriel off of a med and his personality coming back!

Gabriel has been BEGGING for food lately. I have been careful to still feed him in ratio but have not been as diligent in calorie intake.  He is also testing boundaries with food more and more. He does so well 90% of the time but the older he gets the harder it is going to be to control what food he is and isn’t around.

If the diet isn’t keeping the seizures at bay it is a lot of work, expense, physical toll on G’s body  and social isolation for all of us for no reason. We are more used to it than a year and 1/2 ago. However, it very difficult to live in our food obsessed culture, and not feel constantly out of place. I would love to focus my efforts on helping him developmentally  and enjoying time with as a family, instead of spending so much time buying, preparing and avoiding food. I keep finding myself dreaming of trick or treating for real! Not having to have a special treat ready to hand Santa instead of the candy cane! Getting to leave the house without spending an extra 5-20 minutes making sure he has the food he will need.

Even, with the resolve of the decision, it is scary. We are hoping our doctor understands and supports our desires (they are not decisions made in a vacuum, we have done a lot of research, followed the diet for over 18 months, sought input from a variety of reliable sources). We are also hoping that the seizures stay away. Epilepsy is such a bear! It is scary to think that any change we make in his treatment  can cause the seizures to reappear. He is doing awesome right now and we want that to continue. We also want to make sure his body is only being exposed to treatments that are working.

We covet your prayers for a great response from our doctor and a smooth, seizure free wean from the diet.

****I want to be clear that we still totally believe in and support the ketogentic diet as an amazing and truly miraculous form of treatment for epilepsy patients. (It just doesn’t seem to be Gabriel’s miracle)

What a great day Gabriel has had!
1. He got to ride the bus home from school. He was so excited to ride the bus.

2. He answered a question his teacher asked him at circle time! HUUUUGE! The teacher included in an email to me and mentioned what an impression it made on all of the other adults who had worked with him last year! They had never seen him answer a question. News like this makes my heart soar. He is gaining skills to function in the world. So proud of him!

Gabriel has an appointment with the behavioral neuropsychology specialist tomorrow. We had a bear of a time getting the appointment made! We still aren’t sure if it is going to be a follow up on a developmental assessment he did last year or for getting resources to help with the new level of impulsive and inattentiveness we are seeing. EIther way we are going to bring up our concerns with his new lack of understanding when things are not safe. (things like grabbing for pots on stovetop).

We are also starting to have problem with his sneaking food. He found a few pieces of shredded cheese on the table, left from us cooking and ate them plain. Our house is pretty locked down but he is at school now with other kids eating regular snacks. In the past I wasn’t worried because he followed directions easily and willingly, not so sure anymore. Another reason we are hoping to kick the diet asap.

BUT today I am focusing on the good and asking God to help me feel the good as deeply as I do the bad.

Gabriel started school on Friday. He was supposed to start on Thursday but ended up coming down with a cold on Tuesday. It is amazing how a simple cold knocks G man out. He slept all day Wednesday and most of the the Thursday. He bounced back Thursday evening, so we knew he would be heading to school on Friday.

Drop off went well. He has a new teacher this year but the para’s (teacher helpers) are they same at least year. It was great to see him walk right up to one them and get in line with his classmates. Nice to see a lot of familiar faces. I was shocked at how much older all the kids looked. Then as I was loading in photos today I realized that Gabriel has grown up a lot this summer too!

When I picked him up from school I asked how his day was. He said something like I had fun or I played. I can’t remember because right after that he said. I played London Bridge, then started singing it! This is HUGE! He rarely answers questions directly and almost never with detail. We usually find out about things that he did in totally round about ways. I was so excited that he enjoyed his day enough to report on it! Then he sang london bridge several more times, until we got the ipad out to record him singing it…. LOL 🙂

Gabriel is 5 months seizure free! It is so exciting to type this! He starts school in a couple days and I can’t help comparing this summer to last summer. What a difference! We were truly in the valley and now we are out! Yippee! I’ve been doing some serious organizing and purging the last few days and came across things I do not miss at all! We are not having to obsessively track every bite he eats to later match it with the seizure log to see connections. We are not having to keep a seizure log! We not having to test of ketones in his urine every day. We are not having to use diastat (valium) to stop long seizures. We are not having to call 911. We are not having to hover over him like you do a baby taking his first steps. We are not having to make sure his helmet is either on his head or at arms reach. AMAZING! Last summer was awful! Stressful and scary. This summer has been fun and relaxing. I didn’t make a bucket list of things to do but tried to remember to stop, enjoy the moment and take the extra adventure when possible. We didn’t do big things but things like going to the swimming pool or having a playdate became BIG because Gabriel was able to be present and fully participate!

Things continue to go well with him off of Keppra. We have our next appointment with his specialist at the end of Sept. We are hoping to wean off the diet.  We really don’t think it is doing any good. Especially as we continue to read about the children having success on the diet, and there are many, Gabriel’s story just doesn’t match. His story is the day he  started taking Felbamate his seizures stopped. We know the seizures can come back at anytime…he has been having some sleep issues lately and caught a cold with a cough yesterday. It is amazing how “normal” little hiccups in his pattern cause such concern for us. It is justified, these things can be indicators that seizures are coming or things that cause them.  But thankfully so far they have stayed away!

I realize I no longer mark time by seasons or events but by time without seizures. School starting is a big deal! A big marker for most families. I am literally afraid that I am going to forget to take Gabriel on his first day of school on Thursday.  While I am excited and it is a cool thing that he gets to go to a great preschool, it seems very insignificant. He is happy, healthy and developing and the treatment regamin is on right now is allowing his brain to make these things happen.