We just completed a successful round of Keto Trick or Treating. Gabriel LOVED the cars, trashies and other treats he got.

Gabriel choose to be a firefighter this year. I thought for sure he would want to be an engineer again and go grab costume from last year. He surprised me and went with my plan 😉

We passed out letters explaining Gabriel’s condition and little treat bags asking the neighbors to give Gabriel the treat bag instead of candy. We were WAY behind this year and got them passed out this afternoon! (Last year I had them made weeks before and passed out several days ahead). We are so appreciative to live in a great neighborhood with really nice families. A couple people even added extra treats or wrote personal notes to us. AMAZING!

It is so nice to allow him to have everyday kid experiences! Trick or treating was a lot of fun for him!

In general news we are almost 8 months seizure free and the diet changes continue to go well. His favorite meal right now is deli ham and heavy cream. The doctors are changing his ratio every week instead of every 2 weeks now. We are hopeful that we may be off the diet by Christmas.  His energy levels continue to be all or nothing but we are a little more used to it. For instance he was wide awake at 5 a.m. literally climbing the dresser drawers. Then he could barely stay awake to trick or treat (I ended up carrying him 1/2 the time) and now it is 9 p.m. and he is wide awake again.

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!