Keto Food

After doing the Keto Diet for a while now, you become more comfortable on foods that you can experiment with! Here are some of the foods we have made

Cheesy Bread Rounds
Chocolate and Vanilla Cheesecake Balls

KetoGenic Donuts

Its fun to let Aurora help bake and cook her foods!

Our donuts, ready to be fried!

My big helper :)

There growing like weeds.....

All my kids, Aurora, Wesley and Duncan are growing so fast!!! Here are some pictures to share!

Keto Life.

So once again its been forever since I posted! Having 3 kids doesnt allow me much time to update this... and then it slips my mind.

Aurora has been doing great! She has been on the Ketogenic diet now for a year. And went almost 80 days with not one seizure!!!! Thats a record for her. She had 1 day of seizures and now is back on to a couple weeks of none. Even though she isnt seizure free, I wouldnt want it any other way.... this is better than before, so I will except it and be grateful! We transfered her diet care into the Boston Childrens Hospitals hands, where I now have more resources at my reach. This has also been helpful in allowing Aurora to have more food options and ideas! She had popcorn with butter for the first time in 1 year!!!! And today she ate Chocolate Cake with Cheesecake Frosting (using Ketocal Powder!) and its actually very yummy!!!

Im very lucky that she has been compliant with the diet, and hasnt given me too much of a struggle to eat the foods. She has her days where she doesnt want to finish the mayo or butter that she has to eat! But.... she does a great job, and realizes that this diet has stopped her seizures for the most part! Aurora amazes me everyday with her bright creative mind, and her bubbly personality!!!

Welcome Duncan Reed

Our newest Addition is here! Duncan Reed... he has been a great addition to our family :) And fits in perfectly!!!!! Aurora and Wesley love him to pieces!

BTW: He's going to be ALREADY be 15 weeks on Monday! Time flies....

WOW~

I cannot believe my last post was in Feb! Its been SO LONG! So much has happened. Literally. Aurora after my last post started having seizures anywhere from 3-30 a day. It had gotten so bad. She was being hospitalized every other day. We were taking ambulance rides to Boston Childrens Hospital! It was so insane :( Aurora was living a life of hell, and it soon felt like her quality of life was just completely disappearing. What a terrible feeling of not being able to do anything for her... not knowing whats next? Will this end? Will it get better?



The turning point was another night sitting in the ER, Aurora had a night of cluster seizures... and emergency meds. As we were sitting in the ER, the next plan was to put her on a 3rd medicine! I sat there by her side, bawling... (by the way at this point I was 8 months pregnant)! I didnt NOT want to put her on a 3rd med... I just wanted her to be better! I couldnt stand seeing her suffer from these seizures... to be so unhappy and live a bad life! The plan in my mind was to start her on the Ketogenic Diet. It was natural, it wasnt another med, and it was said to help treat "Hard to Control Seizures". The plan... start her on it that following Monday. She would need to be admitted to the hospital and fast for 24 hours. Then be started on the diet.



On that Monday, we brought her in to start the diet. She was so miserable... she didnt eat ANYTHING in the hospital. She didnt understand why this was happening? Why she couldnt eat her regular foods!?! She had a huge drop in blood sugar and was pale, shaky, weak... she slept ALOT the first 2 days in the hospital. It scared me to see her look so sick from starting the diet.



She went 40 days on the diet of NO SEIZURES!!!!! And since then she has gone about every 3-4 weeks of no seizures, and then has 1 day of a cluster, and recently that has even decreased to 1 seizure!!!! No emergency meds, and she hasnt been in the hospital for almost 6 months! Its been a huge change! The seizures are controlled about 90-95% with the diet... she has that little 5% left!!!!! We have been still tweaking and trying to modify the diet to get good results!



Even if she stayed this way! I am happy for her. She has her life back. She is playing, and doing all the things a kid her age should be doing! She looks great :) Its been hard to have her adjust to the diet, but she has been such a trooper! Shes one strong kid!

Update from yesterday..

I ended up having to give Aurora a Valuim at 3pm. And then she didnt have any episodes all night until 3am she woke up in a seizure...

We ended up taking her to the ER... nothing major happened. This time no IV or Ativan, just more Valuim. They want me to keep her on it every 6 hours for the next 48 hours until her new dose of Depakote kicks in.

We are all beat. Sucks. Kelly and I got into a huge fight. Its so hard to have a relationship and not be stressed out when you have a child who is in and out of the hospital all the time. I can say this on here.... I dont want Aurora to ever think her Epilepsy takes an effect on our relationship, but it does... its just alot of stress!

Oh well...

Now we wait and see if this new dose will stop these DAMN seizures!

19 Days of no seizures, and then it happens!!!!

Aurora had 19 GREAT days of no seizures! However for the past 5 days she has been saying she is going to have a seizure... and then gets the look and nothing happens. This is her pattern... a couple days of saying she is going to have a seizure, and then by the 3-4th day she finally has one!
It sucks... 19 days is great! This is why when people say to me "WOW, 19 days!!! That is great!" I dont get excited. I have seen her go 30 days and then weeks of seizures! I hate to be NOT optimistic... but with Epilepsy you cant be. Its so uncertain! I hate it....
Anyways. I am waiting as I write this to speak with her Neurologist, to find out the next plan for her meds. I am sure they will increase her Depakote.
For now... we wait.
My poor girl. I wish for anything for this to all go away! I keep telling myself it could be SO MUCH worse, she could have Lukeima, or a child cancer!