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 :)

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!

Aurora and her Baby Alive...
She just had her most intense seizure ever. This was after 2 rounds of Ativan!!!

No matter the situation, she can always make things fun and positive. This is what I love about her!

What was so funny was that her and my mom (Mam) were eating strawberry shortcake, and Aurora thought putting whip cream on your face was the most hilarious thing in the world!

LOL, see Mam you do it!!! LOL~

She's a free girl, KINDA!

Aurora finally got to get her leads off today! YIPPEE... she was so worried about where her hair went, LOL, and was suprised to know it was STILL there! I was able to get her out of the room and let her play in the playroom! She is so beat though so she wanted to go back to her bed and watch "Annie" her favortie movie!

I AM SO TIRED! SOOOOO SOOOOO TIRED!

I cannot wait to get out of here, and get these kids home!

The Neurologist and Epi should be in soon to discuss the NEW PLAN. I am sure they up'd her Depakote, and Keppra... and I heard they were contemplating adding a third med. One that she would take at night before bed!

I will update when I am aware of the plan.

Still in Boston, Day 6

We are still here! SUCKS SUCKS SUCKS! Aurora had a massive seizure last night. Scared the crap right out of me! The docs actually just came in to tell me that she was actually in a PARTIAL not fully seizing, but partially there seizure for almost 1 hour, and I WAS LAYING WITH HER, and had no clue!

I am beating myself up about this... literally feeling guilty and shitty! Its not good! I cant keep my emotions in, I am run down and tired, and feel like complete CRAP! Last night when I was laying with her, I couldnt I MEAN COULDNT keep my eyes open. They just kept on shutting, and I guess during alot of those times that I kept passing out, Aurora was in a seizure! AND I WAS SLEEPING! See.... kicking my ass! Its not good!

Anyways. The plan is that she HOPEFULLY will have a seizure tommorow between the hours of 8am-2pm, where at that point they will inject a dye that will go straight to the area of her brain that is seizing... and this I guess is good information for them to know. THEN THEY PROMISED at 2PM she will go back on meds... WE will still be here for a couple days so we will probably head home Monday Morning!

I feel like I am living a nightmare right now. I want to get her home so bad.... :(

They have found out a lot of information, and said that now they know what TYPES of seizures she is having, EXACTLY what they look like, they will start an agressive treatment, and WILL HOPEFULLY stop ALL her seizures!

We will be watching all the Seizures on video before we leave so that we KNOW exactly what to be looking for!

I am beat, Aurora is beat, Wesley is beat.... WE NEED TO GET HOME... So please keep Aurora in your prayers, and hopefully I can bring my princess home on monday!

Card sent from Amanda (A friend)

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Update on Aurora

Hey everyone. So we are still here in Boston. On day 4. My neck hurts so bad from having to sleep on a tiny cot with Wesley and I am ABSOLUTELY miserable, I CANNOT WAIT to get my kids home! So if I am that miserable, you can imagine how Aurora is! She is still on the leads, they have captured 1 seizure so far, and want at least 2 more. I am starting to think we will be here all week, which sucks! She looks and feels like crap! Poor kid! She kept saying last night: "I want to go home, where is the car?" "I love you mommy, I am sorry for this""Its all my fault, this is all my fault!" While she hysterically cried. When I told her that this wasnt her fault and that it was OK... and that we loved her so much, she just cried and hugged me and and said "I love you mommy!" SO DAMN SAD! This is horrible. We are here to figure this all out, but my Aurora is feeling upset and thinking she did something wrong. It breaks my heart! She asked me why Wesley didnt need his special hat, or have seizures! Epilepsy is so much more than the seizures, not only do we have to deal with the seizures, but trying to make Aurora understand she did NOTHING wrong, and that its ok... and try to explain to her why Wesley doesnt have to wear a hat or do what she is doing right now!This sucks! I cried a little bit yesterday because I had gotten the news that the night before when WHAT WE THOUGHT was Aurora's typical seizures (and had 9 of them) those were not showing up at seizures on the EEG. They said that they could be MINI seizures or Aura's that she is getting, because she had 9 of them and then she had a 3 minute long seizure. I WAS STARTLED when I watched the video with the doctors to find out that when she did have the seizure they captured on video that I WAS LOOKING RIGHT AT HER, and didnt even have a clue. It was so subtle. She cranked her head over, eyes kind of fixated, and then she turned rubbed her nose, and then eye... and then did something weird with her mouth which was so hard to notice because she had her paci in, and she was laying down trying to sleep.. and can I say this was at 4am! I felt so guilty that I had been LOOKING RIGHT AT HER and had no clue. Plus I was by myself here that night with both the kids, and I was exhausted and barely could keep my eyes open! I want to hurry and get this over with, and get my Aurora Bug home.... This has been a nightmare! And now that we learned what these new seizures look like, I feel sick to my stomach, thinking "HOW WILL I KNOW?" I am going to be that mom FREAK who questions every time she rubs her eyes or nose???? THIS SUCKS SUCKS SUCKS! Awwwwwwwwwww. Anyways, it feels good to write this all out!

We are in Boston.

Well, Aurora went into cluster seizures 3 days ago... ER TRIP, IV MEDS, ect ect. We were suppose to come to Boston on Wednesday for a 5 day Video EEG... but because of this, we drove down last night...

We got here a little after midnight, and then didnt get into her EEG room until almost 4am, BOTH KIDS stayed up until about 4:30am and we all were up by 8am! TALK ABOUT BEAT!

Aurora is hooked up to the EEG, and they will start the med wean process tommorow. We already spoke with a couple of doctors, who feel that NUMBER ONE: Aurora is still not at a therapeutic level for her Depakote, so that can be why she is still having seizures, so they want to continue to increase it slowly to get to the therapuetic range, and then SECONDLY: The EEG they said will tell them so much if they catch her seizures...

So we are here. I am very tired.... The kids are tired. But we were advised to let Aurora SKIP nap and stay up until about 11-midnight tonight!

I feel so bad for her. I cant tell you how much this breaks my heart that she has to go through this! Its so unfair...

She has been stuck 5 times now.. 3 times to try to put in a IV for her stay here and then this morning for blood level draw. Then getting the leads on SHE HATES HATES HATES that, and just cries and looks at me and says "I love you Mommy, This is not good!" SOOOO SAD!

I have to so much hold my emotions in, but I feel like tonight I will take a shower here and just cry... because this is so much to go through for all of us!

I get mad and think sometimes, WHY THE HELL did this have to all happen to my daughter... but then I stop myself and think "THANK GOD I have her in my life, and things could ALWAYS ALWAYS be so much worse!"

Anyways. If you want to contact us you can call the BCH directly and ask for ROOM #917.

I will update soon :) I have limited computer access... and I cant log onto myspace... so hopefully people will know to come here!

Home from Boston.

So we are home from our trip to Boston with Aurora.... I AM BEAT BEAT BEAT! Phew, it is good to be home.
Her appointment was GREAT! I transferred her care into the new doctors hands, Dr. Takeoka. He was an amazing doctor, very smart, and kind, and had a plan in place :) He was very confident that he could treat Aurora and get her control! I liked the idea of her seeing him because he is an Epilepsy Specialist, he eats sleeps and breaths Epilepsy... and that is where she needs to be.

He did say that because she is in the category of being hard to treat, that being in Boston was a great place for her, and that she would be in great hands!

We will be going back Jan 21st for a 5 night Video EEG, where they will actually wean her off her meds, and then want a seizure to be captured on the EEG. Then they will put her back on the meds, we will be there about 1 week!

He said that doing this is important to see EXACTLY where the seizures are taking place when they happen... he said with this information he would be able to narrow down meds that will work for her specific seizures and location of the brain!

To me, this is a good next step... I dont want to play guessing games with meds, and have her be a guinea pig... so this is good!

So, we are back home, we are all beat!!!!

For now, she is on day 6 of no seizures, and all is well except for these colds we caught being there... BLAH!

I have my doc appointment tommorow and then my ultrasound in 1 week to find out the gender of the baby!!! VERY exciting.. its crazy that I am almost 20 weeks... its flying by already!