Make A Wish Trip

The Make A Wish Trip, was BEYONDS words. It was a little difficult going with our kids at such a young age... but all in all, it was memorable! Aurora loved every second of it, so that is all that matters. One set back was that she had gotten sick, and had to make a visit to the ER in FL... I think the plane ride didn't help with a brewing ear infection... so once she got on antibiotics she was able to enjoy the trip better.

Miss Aurora...

Where does the time go? Miss Aurora is going to be 5 THIS MONTH! There are a lot of things going on in her life right now. A lot of good things. She is starting school next week on Tuesday. We choose to go with a small private preschool. She will be in a classroom with 6 other kids, 4 girls and 1 boy :) That poor boy!!! Shes very excited to start, and I am very nervous. I'm not nervous for the fact that she is going to school, or because she wont be in my sight. I am nervous because of her diet. I pray that she understands enough that she cannot eat what the others kids are having, so if one of the kids offers her a bite, she needs to say NO. The other part is that the Ketogenic Diet makes kids more susceptible to infections... and I worry that because she has never been in a group setting that she is going to be sick all the time. I just hope that her immunities are built up enough where she catches these things, and they don't turn into a secondary infection with her. Its not like she has been a healthy stay at home kid. She has caught everything under the sun. Every cold, stomach bug, hand foot and mouth (3 times), Strep Throat (3 times), Pneumonia (4 times), RSV, Rotovirus... so you would think she is ready to go, with a good immune system. We took her shopping and she picked out her Hannah Montana Backpack. She LOVES Hannah Montana. So off to school next week she goes :( She has been home with me for FIVE YEARS. A piece of my heart is so sad to let her go... and its only for THREE DAYS!!! lol. But I am torn. I have been her eyes, I watch over her, make sure she is safe, make sure she is ok.. and I am passing this responsibility on to someone else. I have to trust that my daughter will be ok in there hands. This is a hard thing for me to do because I have been that person for Aurora for 5 years. I knew this time would come, just not so soon. I am very ready for her to start school though, it will be a good break for not only her, but myself. I need it mentally!

We had to cancel Aurora's Make A Wish Trip last year because she was seizing like crazy. I knew if we had gone, that we would have been in the Orlando Hospital the whole vacation. But now, at 14 months, she has only had TWO seizures!!!!!!!!! So we are going on her trip this month, leaving the day before her birthday! I am THRILLED for her. She not only will be 5, and I am sure remember this trip... but shes not having seizures, and can go on the rides, and be a kid and have a blast! Her wish was to have lunch with Cinderella. Shes beyond excited to meet all the princesses!

Another great thing is that she is weaning off her Depakote. Because she has only had 2 seizures in over a year... they felt that it was time to start seeing if we could take away some of the seizure medication she is on. So I decided to start with the Depakote because I feel that medicine has the worse side effects! She has had hair thinning from it, easy bruising, and whats crazy is that Depakote is a mood stabilizer as well, but I think it does the complete opposite for her. I think it makes her irritable, and she tires out very easily. You would think an almost 5 year old wouldn't nap every day, for 2 hours a day!!! But she does. I'm hoping that with the Depakote wean, I will see her have more energy... and less bruising, and her hair fill out more. She was on the max dose for Depakote. So this is week 5 that we have started to taper it down. She comes down half a dose every 4 weeks. They are taking the wean very slow, and I have to have her Diastat on hand at all times, because with the decrease in seizure meds, could mean a worse seizure... so I have the diastat handy just in case she goes into clusters or status! My hopes is that she can come completely off the Depakote. I absolutely hate this medication!!!!! The goal is that if she can come off the Depakote completely and not have a seizure, than we can try to wean her other medication Keppra... which she is on max dose of.

If she can come off all medications, and then be one year seizure free on the diet, than we would try to wean the diet. This is the goal!

I had the pleasure of talking to another mom whose child has intractable epilepsy. She lives in Boston Mass, and her son is one year older than Aurora. He had bad seizures like Aurora did, and tried around 8 different seizure meds... none of them worked at all for him. So they put him on the diet, and he became seizure free was able to come off his meds, and the diet, and now has been seizure free one year off the diet. He had his first EEG recently since being off the diet and it was COMPLETELY NORMAL!!!!!!!!!!! This is my DREAM for Aurora. I think this is every parents dream with a child with Intractable Epilepsy! I just keep praying and hoping that she can stay seizure free, and someday be able to eat normally again, and not have to take medications. I learned a lot from this mom, and was able to see that WE ARE NOT ALONE. A lot of the stuff Aurora has been going through on this diet, like Constipation, and holding her poop in when she has to go... or not wanting to drink any fluids, are all things this mom went through with her son. Its nice to know that what Aurora is doing is not ABNORMAL, and other kids on the diet display the same behaviors.

Anyways, there is a quick update on Aurora :) I am sure I wont update until we get back from her Make a Wish Trip.. because I am horrible on keeping up with the blog!

Our Wedding...

Kelly and I finally got married August 14th! I have to say that my ceremony was absolutely beautiful. I cannot believe the feeling of walking into the church on my fathers arm, and seeing Kelly standing there waiting for me! It was unreal! I loved my dress, and Kelly wore a Ivory suit to match my dress. He looked stunning! As for my reception, well if you were to ask my Mother she said it was the worse wedding she has ever been to! LOL. Kelly and myself didnt even really get to enjoy our reception, because we spent the whole time chasing our kids everywhere. We didnt even eat together, and we didnt even cut the cake. Needless to say, I was glad and grateful for everyone who could make it... and to have family come together to help us celebrate. Kelly and I are already planning our 1 year anniversary. It will be a HUGE party... NO KIDS NO KIDS NO KIDS, and ABSOLUTELY NO EXCEPTIONS! :) LOL. And we will cut our cake!!!!!!

Aurora is doing well!!!

108 days of no seizures for my baby girl!!!!!!!!!!!!!!!!! This is the newest record! I couldnt be more grateful! I hate saying how many days its been because I fear I am going to jinx it! But I have to say it because I am so happy for her!! This diet is giving her, her life back!

Recently Aurora got sick and then it turned into Pnemonia! She had gotten so sick, and this is because she has seizures, she is on the Ketogenic Diet. When Aurora gets sick, its very different than as if my 10 month old (duncan) got sick. he too had Pnemonia but wasnt even CLOSE to as sick as Aurora was. It bugs me because people do not understand that when Aurora gets sick, she has other factors that play into how well she will do or not do! She became very very dehydrated. The Ketogenic Diet ALREADY suppresses thirst! So being sick made her not want to drink at all. on top of that she had a fever of 105.3! So this too made her dehydrated! Than she wasnt eating. For someone on the Ketogenic Diet that has established Ketones, eating only makes these Ketones larger. You have to be careful that your child doesnt produce TOO MANY ketones, and also that they do not become Acidophic, which is when your blood produces too much acid and it throws your PH off in your blood! This is what they thought had happened to her when we rushed her to the ER.. but luckily it did not! PHEW!

After 4 days in the hospital, IV fluids for 2 days, Oxygen, and barely eating or drinking, she came home! For the first couple days of being home she was very tired, still not eating or drinking...... but she did perk up and became much better! When she gets sick, it ALWAYS scares me! I just dont think that will ever go away.

Besides that, she is doing well! Growing physically and socially! Shes a bright little girl, and I cant wait for her to start school in the Fall. now that she is in WAY better control of her seizures, I am more confident on sending her to school.

Her brothers: Wesley is getting so big. Hes so handsome, yet an animal. He is very musically talented, and also now has picked up the hobby of breakdancing. And for him being only 2, hes soooooooo cute doing it!!!!!! Hes a good boy, and LOVES his sister Aurora!!!

Duncan is getting so big, and will be 1 years old in a few months! Its so unreal to me that they can grow so fast, and change SO much in one year!!!!! He has cut 6 teeth all at once, and I am trying to CHERISH that gummy smile for as long as I can before those chomps come all the way in!

Kelly and I are doing VERY WELL! We have been busy planning our wedding... which is coming up in 3 months! I cannot wait to marry him, and complete our family. Aurora asks everyday "daddy are you going to marry mommy yet?!?!?" She has no patients! LOL. I cant wait to become Mrs. Husk, and then move on to the next chapter in our lives, BUYING A HOUSE!!! We are both very sick of renting and paying more money than we should... its time to own a house!!!!!!!

So there is an update for now :)

I couldnt do without KetoCal Powder!!!! SERIOUSLY!

I can say that I am GRATEFUL for Ketocal Powder. We are able to make so many YUMMY goodies that Aurora can eat! Her favorite, Blueberry Pancakes!!!! They are good!!! We make Fudge, Pancakes, Cupcakes... I just wish that it was covered by her health insurance, but its not. The only way it could be covered is if she was tube fed. Which she is not.

The BEST thing we have made with KetoCal is PIZZA so far!!!!! It was so yummy, and she got SO MUCH of it! I was actually shocked at the portion!

Im so glad I found these!!!!

These are 2 of Aurora's FAVORITE things to eat and drink! Luckily they are both ok for the Ketogenic Diet. The first is Just the Cheese Snacks. We bought these in BULK! They come in every flavor. Aurora's favorite is the POPPED CHEESE. You poke a couple holes in the bag, and then put it in the microwave for a few seconds, they are just like popcorn, but flavored. You can get them in Pizza, Ranch, Chedder.... and they are DELICIOUS!!!!!
I was so excited for Aurora when I happened to come across these in the Health Food Section of our Grocery Store. WATEROOS!!!! They come plain water, or they come flavored! She was BEYOND excited to be able to have a juice box!

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 :)