The Husk Family

Make A Wish Trip

2011-02-14T08:54:00.000-08:00

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...

2010-09-03T09:59:00.000-07:00

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...

2010-09-03T09:53:00.000-07:00

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!!!

2010-04-18T19:30:00.000-07:00

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!

2010-04-18T19:23:00.000-07:00

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!!!!

2010-04-18T19:17:00.000-07:00

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

2010-04-18T19:02:00.000-07:00

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.....

2010-01-21T11:47:00.000-08:00

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

Keto Life.

2010-01-21T11:38:00.000-08:00

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

2009-09-18T18:28:00.001-07:00

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~

2009-09-18T18:03:00.000-07:00

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..

2009-02-10T08:52:00.000-08:00

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!!!!

2009-02-09T03:26:00.000-08:00

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!

2009-01-26T08:33:00.000-08:00

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!

2009-01-23T12:46:00.000-08:00

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

2009-01-22T14:05:00.000-08:00

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)

2009-01-20T13:03:00.001-08:00

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Update on Aurora

2009-01-20T07:17:00.000-08:00

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.

2009-01-17T09:25:00.000-08:00

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.

2009-01-08T15:44:00.000-08:00

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!

18 Weeks and counting...

2009-01-04T12:54:00.000-08:00

I will be 18 weeks tommorow... and will be finding out the gender in 2 weeks!!! Time is flying by~ I pray things settle with Aurora, this whole pregnancy has been a WHIRL WIND of emotions and fear that she wont be controlled... and another baby might make things worse! I pray not! She loves her brother, and everyone says SHE WILL BE FINE!!!

I am excited to find out what we are having, and have names picked out, WHICH ARE SECRET! LOL!

Mr. Wesley

2009-01-04T12:39:00.000-08:00

LOL... Mr. Wes is going to be 1 years old in 1 month!! He has been walking for 2 weeks now! He is such a good boy :) I love him to peices!
In this picture, he was laughing SOOO hard! LOL

New pics of "Tank"

2009-01-04T12:31:00.000-08:00

Allergic Reaction to TREE NUT Pictures~

2009-01-04T12:23:00.000-08:00

Seizures just couldnt stay away!

2009-01-04T11:58:00.000-08:00

Aurora made it to day 28 with NO SEIZURES! This was amazing considering she hasnt gone this long in I dont even remember when!

I really thought that she wasnt going to have any....

Last weekend Dec 27th, I gave Aurora a peice of chocolate that we had gotten from Christmas time. I had my sister pick it out and asked her to give Aurora one with "Peanuts"... WELL the box must have been flipped the other way, and instead she got one with "Walnuts" which she has never had!

WITHIN 5 minutes Aurora was puking, and hives from HEAD TO TOE!!!! I rushed her to the ER where they gave her 3 different meds to make the reaction stop! It was horrible... She itched so bad!!!

So that Monday we took her to Timberlane Allergy, where she tested positive for being allergic to "Walnuts" and "Pistachio's" GREAT!!!! Which means she now needs to have an Epi pen with us at all times! And it seems like it would be easy to make sure she doesnt have these things, BUT because its tree nuts, they banned her from ALL TREE NUTS! COME ON! The other day I wanted to make some brownies with her... and what do you know, right on the side of the box, "This was manufactured on the same table as tree nuts!" You got to be kidding me! So now I am a freak CHECKING ALL LABELS!

So of course the next day after her ER visit and all the Steriod meds, she looked very off, very seizury! For the first time in 28 days, she was saying "Im going to have a seizure" she said this for days... until 2 days ago, she woke up at 5:30am, and had a seizure! Then she had 6 more, landed herself in the ER, IV Meds, and a crappy day! DAMN DAMN DAMN DAMN!

I wasnt suprised, because it seemed that the HIVES and Steriod meds made her look seizury, and her Pedi came to see her in the ER that day while she was having seizures and said that the Steriod Meds probably played a big part in her Break through seizures.

Her blood work done that day also showed that she wasnt at her level yet for her Depakote. Her level that they want her at should be 90-100, and she was at 61. Soooo, they bumped up her meds! She still looks off... but we are now recounting, and today is day 2 of no seizures, and that in my mind is good! I dont want her to have seizures everyday! So ANY DAY without a seizure in my book is A GREAT DAY!

Sucks to have to update with bad news! But that is why I havent updated, its been a crazy 2 weeks...

We leave for Boston to meet with the new Neuro in 2 days. I am excited to hear another perspective. We love her current Neuro, and do not have any problems with her at all, and think she has really looked out for Aurora... but sometimes other doctors think of something the other didnt, or they might have other suggestions, and at this point... I will take anything we can get to make her better!

In 1 month, it will be 1 year since Aurora was diagnosed with Epilepsy, and she isnt controlled fully! This makes me so sad... I cried in bed the other night thinking, PLEASE GOD give her the strength to make this better, to help her NOT have seizures!!!!!

I pray with this new year that she will get that!!!!!

15 DAYS!!!!!!!!!!!!!!!!!!!!!!!

2008-12-20T05:59:00.001-08:00

THATS RIGHT! Aurora is on DAY 15! I am such a freak. I was saying it was less days, and then realized the other day that her Depakote Prescription was almost out and thought "Wait, that was for a 2 week script!" AND REALIZED! MISS AURORA IS ON DAY 15 today for NO SEIZURES!
We are going to celebrate, and do something fun... and then have a ice cream sundae party tonight! I will take pics and post!

I had posted the days earlier in my posts, and they were wrong... she actually was on more days!! DUH!

Hopefully with no Xopenex, no Tegretol, and NO Topomax, things will calm down for her. I PRAY that my baby girl can be home for Christmas, and NOT in a hospital!!! So please pray that for her... she deserves a break!

MRI Update, Interesting DRIVE!

2008-12-18T04:33:00.000-08:00

What a horrible timing for a winter snow storm than the morning of Aurora's MRI. We left at 6:30 and it was snowing so hard in Ripton, I couldnt even come to a stop at a stop sign on our road without SLIDDING! Oh boy... I should have known since its A MOUNTAIN and all down hill. I slide the whole way down, and then offically lost control right at the bottom near the bridge and landed in the ditch... about 4 feet from the bridge. SCARED THE CRAP right out of me. LUCKILY Kelly had been following me in his truck, and pulled me out. Poor Kel couldnt leave me out of his sight the whole drive he was so freaked about me and the kids going off the road! I had my sister Lynzee with me too....

The MRI went ok. They had to give Aurora a Med before hand to calm her down. She was sooooo freaked out about even having to go to the hospital I couldnt get her to walk into the room! So they gave her the meds outside in the hall, and pulled her in a wagon until it messed her up so bad she acted drunk...

The MRI took about 1 1/2 hours. We had been running so late so I got there around 9:30 and she got into her MRI around 11:15...

I talked to Nancy (Neuro Nurse) and she gave me a brief results... NO tumors, or anything NEW...

She said that the report said "UNCHANGED" from last MRI. Which worries me because her last MRI she was 1 years old, and there was still blood in her brain from the bleed... so she said she wasnt sure if that meant the blood was "STILL" there or what??? SO we will wait to hear from the Neurologist.

Besides that I felt a 10000000 POUNDS lifted off my shoulder by knowing that she didnt have something going on NEW in her brain! SO THANK YOU GOD!!!!

I prayed so hard the night before... and obviously God was listening... he must be listening this whole time because I didnt ask for him to change my daughters health because I know he cant... but to guide us, keep us safe! And that is what happened!!!

ANYWAYS. We are home. I have a Prenatal appointment, and then our butts are home for the big storm coming in Friday!

MRI this morning

2008-12-16T22:02:00.000-08:00

Its 1am and I cant sleep.. we have to leave here in 4 hours to get Aurora to Fletcher Allen by 6:45 for registration and then 7am for her MRI... they have to give her an IV and then put her to sleep!

I HATE IT... Its horrible when they inject the stuff and she is talking and then BAM she is out!!!! Kills me....

Anyways. I will keep everyone posted when we get home. Keep my Angel Bug in your prayers!

Update.

2008-12-16T11:57:00.000-08:00

Aurora is on day 7 of no seizures... This is good!
Her MRI is tommorow... So please keep her in your prayers! I hate having them put her to sleep for anything! Its scarey... So hopefully all will go well with that, and the MRI will show nothing major. I know they really want to concentrate on her scar and the area where the bleed was, to make sure those parts of the brain are not changed. Her last MRI was a little over 2 years ago, and at that time she still had blood in her brain... so this will be a clean MRI to show all the scars and where they are, and how large.

Anyways! Fingers crossed for more good days :)

Epilepsy Walk Team

2008-12-16T04:04:00.000-08:00

I have had a couple people contact me and want to join our walking team in DC. This is great.....

If you want to be part of the team, leave a comment here, or email me! Thanks!

Epilepsy Walk

2008-12-15T05:56:00.000-08:00

Kelly and I have decided that we are going to do the Epilepsy Walk in Washington DC March 2009.

I will put a post here on how to make a donation, or join or team to walk!!!!! Either there in DC or Virtually!

Lets raise money to help find better medicine, and learn how to treat Epilepsy... for Aurora and every family who deals with this!

I couldnt resist...

2008-12-14T17:49:00.000-08:00

Aurora was watching a movie, and Tank fell asleep like this. Aurora was zoned right out.. LOL!
She gave Tank this stuffed animal, he has slept with it each time.. SO CUTE!!!!!

I told you, I just cant resist!

Aurora... her artsy side!

2008-12-14T17:31:00.001-08:00

Aurora has been getting into Crafts, majorly! She loves to make collages, doing anything that she can glue or cut with scissors. She is such a crafty child, and has been since she was really little! She likes to make cards for EVERYONE, even though its not there birthdays. I am trying to teach her that making cards and gifts is what counts, not how much you spend on a gift... or if you "BOUGHT" someone something. I want her to learn that giving comes from the heart not your wallet and shopping! I remember as a child making pillows, and magnets...ect and I always thought that was more special than going and buying a gift. For me (I WONT LIE) shopping is ALWAYS easier and quicker. But now that Aurora is getting older, she wants to do this stuff... so of course, mom will too :)

Here are some craft pictures of her doing a collage for "Nette" her great grandmother.

A couple more pics... just for fun!

2008-12-14T17:22:00.000-08:00

I had to post a few more of this precious pup and my fam! Tank is such a cutie pie.

New Puppy, 5 days so far... This is ok!

2008-12-14T17:11:00.000-08:00

Well I cant complain, 5 days is pretty good in my book for Aurora lately! She hasnt gone 5 days without a seizure in a while!

She started her increase tonight on the Depakote. She is at 125MG once a day. Its a BIG pain in the butt because its sprinkles, so that means I have to split it up... she gets 1/2 in the morning, and half mid-day! I hate having to split up powder! UGH... but after doing it a week, its ok I guess! Tonight she got another whole 125MG pill (Sprinkle) so she is now as of today on 250MG. She will stay at this for one week and get her blood work done next week to make sure her count is good, and liver!

We decided all that Aurora has been through that we wanted to give her a little suprise, and got her a new puppy. His name is "Tank" and he is 8 weeks old. He fits very nicely into our growing family! She was so excited not to just have the new puppy but that Layla our golden Retriever would have a "NEW BEST FRIEND!" She was Flipped out for Layla... it was adorable! Layla and Tank are BUDS already...

Tommorow is Aurora's Pre-Op appointment for her MRI. I have to pick up all the records to bring to Boston for the Epilepsy appointment. We are going to be staying in Boston a couple nights so we want to do some fun stuff with Aurora while we are there!

Anyways. Here is to another good day. I am so glad my little girl went 5 days! She is such an amazing child, and despite all this BS she has gone through she just florishes everyday..... I love her so much!

I hate Epilepsy... I feel so bad that other parents are going through the same thing we are. Its a horrible feeling. No one can EVER relate unless they have a child going through it. But I do want to say thank you to all my friends and family, you have been such a great support, especially in the last 8 weeks! THANKS! It means alot to me, and especially to Aurora to have her friends and family around!

For now, Good night!

Day 4

2008-12-13T07:44:00.002-08:00

We are on day 4 of no seizures. I dont want to jinx it so that is all I am saying.

Some Pictures.

2008-12-12T13:30:00.001-08:00

Some new pics.

2008-12-09T09:56:00.001-08:00

A long overdue update.

2008-12-09T09:44:00.000-08:00

Unfortunately I cant update and say Aurora has been seizure free. Its been a HECTIC hell of a month since the last time I posted.

Aurora was put on the Tegretol, which in the end being on it for a couple weeks, it made things WAY WORSE. She didnt have any side effects, but the meds itself made her seizures change, and made them worse and more frequent. So they started to wean her, but at the same time put her on a new drug "Topomax". From the start I was NOT ok with wanting her to take it. The side effects worried me. Weight loss, which Aurora is a skinny minny. And then Cognitive Memory issues!

I had asked them if we could NOT put her on the Topomax, but they wanted me to give it a try. So I agreed. It took me only 3 days to see that this med literally made it so that Aurora's speech and Language was all messed up! She couldnt find the words to use in her sentences... This upset me because Aurora's language has always been great! She has to deal with having the seizures, ambulance rides, IV's, being admitted, EEG's... med changes, the last thing she needs is to lose her memory and not be able to communicate!

This past weekend she started having these weird seizures. She would go to sleep and wake up out of her sleep and her eyes were going back and forth... it was creepy!! So I called the Neurologist in a panic and told them what was going on. This was Friday afternoon at 3pm. They asked me to bring her in to Fletcher and that they would admit her and hook her up for an overnight EEG.

She was so brave. The last EEG it took 3 docs to hold her down and put the leads on. This time she just layed there, cried, was pissed... but let them do it. She kept saying "This is not ok.. this is not ok." but in the end she did it, I was so proud of her!!!! And the docs were impressed! I told her, its much easier when you dont fight!

The night there and the next day of course were hell. I had both the kids, Kelly was at a job interview 3 hours away in West Dover.... so I was waiting for him to get back. He showed up later that night... But we were rooming with another kid who was 2 that had Epilepsy. He also was wicked sick, so he hacked and puked the whole time! GREAT..................

The EEG of course was the worse one yet. It was abnormal... I am waiting to hear of the full results.

They stopped the Tegretol and the Topomax right off that night. The next morning Aurora was back to herself. It took not taking 1 dose to notice how messed that med made her! I was so happy that she was off!

They started her on Depakote, and I havent noticed any side effects.

She went 3 days, and then yesterday night she had 2 small seizures. They only lasted about 10 seconds. So I think the new med is working... and when she gets to a higher dose next week she shouldnt have any more of the 10 second ones either!!! Hopefully it all gets under control!

She has a MRI next week. And then Jan 7th we are going to Boston to meet with a Epilepsy Specialist. We also might talk to a Surgeon down there about Aurora's scar and if it will ever be a serious issue enough for surgery. I PRAY NOT!!!!!

So there is the update.

Seriously need to CLEAR my head and regroup!

2008-11-14T17:50:00.000-08:00

This is the time when my mind starts spinning! Right when my kids are asleep.. and all is quiet! And I am left here to sit with my thoughts. My mind races. Some nights its fine, and im at peace, no worries, or fears, or thinking at all...

Tonight unfortunately is NOT one of those nights...

I am just so tired... EXHAUSTED! Having 2 children alone is hard work. But having 2 children, and then one who has Epilepsy, and another who hasnt stopped wheezing in 2 1/2 months... and then being almost 3 months pregnant! I AM SOOOOOO EXHAUSTED! I am so tired that I can barely stay awake to finish my homework! It sucks!

Everyone keeps saying, you need a break, take a break, get someone to give you a break! But its not that easy... and people can say it how they want, its easy for them to say it... its easy for them to take a break! But they dont have a child with Epilepsy... they dont know how I feel. Its not that easy to just get a sitter and up and leave and go do something. I have seen what happens when my daughter goes into Status, I have seen what happens when she starts clustering... and it scares me IMMENSLY to even think about leaving her right now!!!! NO WAY!

Aurora's seizures come when they want, and I have SEEN way to many times, people who DIDNT know what to do, or didnt think it was a seizure because they had there OWN thoughts on what seizures were! Not to offend them, but uneducated that there are MORE than one different kind of seizure!!!! I dont EVER risk my daughters life, I am her advocate, and I have been there since she was Born, and know my child inside and out, better than I know myself... and I just havent learned to "TRUST" yet! I know I trust myself when it comes to taking care of her.... but I havent yet trusted others... in fear that it could take ONE mistake and risk her life in an emergency situation....

I am not saying this to be offensive, this is my blog, my diary, my vent! And these are my feelings! I love EVERYONE who has been there for us! So my trust doesnt steam from personal issues, it steams from watching over and over again the medical feild brush things off, or not handle things how they should have been handled... that is WHY I am not trusting! I know that if Aurora is with me, I know what is going on, I am educated about her E, I know what needs to happen, and I know how to take care of her when she is seizing! That comforts me! My daughter for the past 9 months has been having seizures... just in the past month alone she has had over 40!!!! and they come unexpedately... I dont have a time for a break!!! They strike out of nowhere, and the one's who read my blog with children with E, you know exactly HOW this is... because we have talked about it on the forums.... its not that easy!

Aurora is my life, my soul, the reason why I breath everyday (Along of course with Mr.Wesley)... these 2 complete me! And I am just not ready to take a break! My idea of a break is being able to take a uninterrupted shower! But you know what you learn to live with how things are happening... our life for the past 9 months has been hectic, crazy, scarey... but in between there has been laughter, fun, and love!!!! I dont have time for a break, and I wish people would stop saying that to me!!!!! Like I wouldnt LOVE to go shopping, but with what money? Like I wouldnt love to go for a couple hours and do something BY MYSELF.. but who will watch the kids? And when they watch them, whose gonna pay them? And who is going to be there when Aurora has a seizure and the Sitter freaks and doesnt DO WHAT is needed when its an emergency! I will seriously take a break when my daughter goes for MONTHS without a seizure and is controlled! That is when I will ENJOY being away from them for a break... but right now, even if I was to go... I would STILL be worried EVERY SECOND about how she was doing. If she was ok.... BLAH BLAH BLAH BLAH BLAH!

So if someone wants to give me a break, I can always use a helping hand around my home... dusting, cleaning, laundry, dishes, meals... or coming to let me take a shower.... or get some homework done! That is what I need.

ANYWAYS!

God I love these blogs, that felt good... now moving on to something else to cleanse my mind!

So I am missing my Grandma.... She hasnt escaped my mind! I keep thinking, GOD IS SHE REALLY GONE? It just seems so impossible! The preacher was GREAT! He couldnt have performed a better funeral... his words were touching! It was weird to have all my family there and NOT her! I miss her. The preacher had everyone close there eyes and think of a great thought of her... and this was mine:

Well a couple :)

I remember my grandmother would have this little rubber green frog that layed on its on lily pad plate. Now that I am older, I know it must have been a sex gag... The frog had a big penis! BUT.... my grandmother of course didnt want me knowing that so she said it was his 3rd leg. AND I loved this frog. Now dont get my gram wrong, I dont think it was wrong AT ALL of her not to put the frog away... because I didnt know... and I seriously LOVED the frog. I thought it was sooooooo cool that he had 3 back legs! She said that EVERY time I came over I asked where frog was. Well I guess one time my grandmother, grandfather and I were all sitting around the living room, and gram had some church people come. And I kept on telling them about my Grams 3 legged frog, and asking her to show them! She was so embarrased... and WAS LIKE NO MEGAN! LOL LOL LOL!

Another memory that I had thought of while I was in the church with my eyes closed was....

My mother always let me take the bus to my grandmother after school. This one time when I got off the bus I didnt look both ways and ran across the street. My grandmother was SO FRIGHTNED that she spanked my butt.... and I cried! Of course I thought she was so mean for doing that!!!!! But she had told me a couple years back the story again, and she said that it had scared the life right out of her, and that she wouldnt know what to do if something had happened to me...

The priest than said "You should be thinking of these amazing memories of Charlene, and they shouldnt make you cry, they should bring a smile to your face!!!"

And these did!!!! My heart is so filled with memories from her! She was such an important person in my life. She was my Grandmother, I was her first grandchild!!!

I cannot tell you how much I miss her!!!

Well enough for tonight... I have to wake Aurora up in 30 minutes to give her, her meds.. . that sucks! She falls asleep, and I have to wake her up for her night dose. There is NO way around it. I tried to work out different times, but NO MATTER what its either the Tegretol or Keppra that I have to wake her up for, they have to be 2 hours apart from each other!!! SUCKS!!!!

For now... Goodnight!

Were home, all seems peaceful!

2008-11-13T19:29:00.000-08:00

Aurora is home. She is sound asleep! Things are ok... wanted to just update that we are home, and if you want to call that is where we are!

Thanks for the flowers, and cards and such!!! It meant alot to Aurora!

I have my fingers crossed that this new med on top of the other is the RIGHT combo!!!

Back in the Hospital with Miss Aurora.

2008-11-13T03:18:00.000-08:00

Well Aurora went almost 5 weeks without seizures! And yesterday afternoon she had 1 seizure, and then went 1 hour, and had another... and then went into clusters. The visiting nurse was there and witnessed what her seizures looked like.

Of course I had to call 911, and she took the ambulance down to the hospital where they gave her an IV, and gave her meds to stop puking from the emergency meds they were going to give her.

This time it felt more organized... maybe they are use to her coming in..? This time they KNEW what to do... not asking me A MILLION questions! So that was nice that they finally had the clue and worked right away to get everything done to help her!

They added a second seizure med in. Tegrotal. She will take it 3 times a day, and will also still take her Keppra 2 times a day.

She will need to get regular blood check ups to make sure this new med isnt affecting her white blood count, or her liver! Scares the shit out of me... but they said AS LONG as she is on a safe level than it shouldnt affect her blood count or liver at all!

I AM PRAYING that these 2 drugs will be the combo that will give her seizure control! I keep telling myself that they said from the start that it will take trying different meds, and different doses... EVERYONE is not the same, and some drugs that work for others, MAY not work for another person!

I have heard that Keppra works sometimes ALONE for some people with CERTAIN seizures, but its usually an ADD ON. So maybe with this new drug the 2 will work like they should!

It breaks my heart to watch my daughter go through this! When the ambulance was coming she said "Mommy, I dont want to have another seizure!" I didnt know what to say. I just picked her up and hugged her and told her Mommy was going to try EVERYTHING in her power to get her better!!!! Inside I was breaking!

Please pray for my angel! She doesnt deserve this. No child does! Pray that these drugs will stop the seizures, and that she can continue to lead a normal life... No more Ambulance rides, no more getting stab for an IV, no more med increases, or switches!

We are in Middlebury this time, which is nice. Usually they ship us to Fletcher, but they decided to keep us here. Its been calm and quiet... private room! And my kids have been able to sleep! Which is EXACTLY what Aurora needs, a good night sleep! We might be here another night.... so that she can be monitored!

I will update again.

RIP my precious Gram!

2008-11-06T08:49:00.000-08:00

My grandmother died a couple days ago. She had battled Colon Cancer for years. She had it and fought it, and was cancer free for 8 years. It came back full force... and it was too much that even Cemo wouldnt touch it.

So she chose to live the remainder of her life knowing that she had limited time. The docs gave her 2 years. She lived 2 years 3 months.

She was an amazing woman. I will miss her so much. We were very close... I was her Meggie Moo!

We have talked everyday for the past 6 years 2, 3 times a day. Its weird to not have her to talk to... She was a very big part of my life... and its so sad she is gone!

RIP Gram, Let the Angels carry you home.

Another good week so far.

2008-11-06T08:42:00.000-08:00

Well all has still been quiet. Aurora is still having good seizure control. I cant complain!

Wesley just went on Pulmicort for his wheezing. He has had 2 doses and his wheezing has cleared up about 90% already. He slept for the first time last night THROUGH the night in 2 months! Probably because he could breath better... poor little guy.

For all the people who read our blog and I havent told yet. I found out I am expecting again. This was an unexpected thing. I am about 9-10 weeks along. I find out in a couple weeks exactly when my due date will be. This will be done with an ultrasound.

At first I was really worried. I have a 3 year old, and a 9 month old! Holy Crap... What am I thinking! Kelly was really concerned because when we had Aurora she had her first Status seizure when Wes was 3 weeks old. It was rough being in the hospital with her while she had tests done, and It was scarey... plus having a new baby... it was tiring! And my nerves felt shot. I called the Neurologist and told her my concerns and she made me feel alot better. She stated that Aurora is such a loving child, and such a great big sister... and that NO one should base having more children on someone with E. She said that is just silly. That if Aurora is going to have seizures, she will have them regardless of another baby added to the family. They said it will be good to see that she stays controlled anyways.

Kelly was pretty upset at first. I dont blame him. 3 kids is pretty overwhelming considering that they will all be under the age of 4. BUT, I do believe that things happen for a reason!

So my family is expanding! I dont mind. I love my children... they are my life! And this is what life is about! Having a family, and watching them grow and florish!

3 Weeks TODAY for no Seizures!

2008-11-01T19:00:00.000-07:00

Today marks 3 weeks of no seizures for Aurora! I am so happy for her! It breaks my heart to watch her have siezures, and I would give anything for her to not have them! So 3 weeks is good... now lets see if she can keep going! Hopefully this new dose will keep her on the right track!

She will be having her blood levels checked just to make sure this level is good, the Neuro nurse said that kids metabilze there meds alot faster than adults... so it will be nice to make sure she is at a good level! I would have to say with her being sick again, and not feeling good, and no seizures YET, that this is a good sign!

I will keep everyone updated. We will be hearing from the Neuro this week about possibly doing a follow up MRI since its been over 2 years. THis will be reassuring to knwo that nothing has changed with her brain, or her scars, ect!

Until next time, Goodnight :)

Happy Halloween!

2008-11-01T08:04:00.000-07:00

Halloween!!! Aurora was Miss Cinderella, and made the PERFECT one! She loved her makeup... it was adorable!

And Mr.Wes was a Kangeroo!

Both kids once again have a cold, that they caught from going to my parents house last weekend. Unfortunately everyone there was sick... and we didnt know until we had ALREADY been there!

So Aurora was a little off last night. Kelly kept saying how Spacey she was, and he was making me EXTREMELY nervous that she was going to have a bad night, BUT SHE DIDNT so YAY!!!! We made Trick or Treating quick, and went and had dinner and then came home and put the kids right to bed!

We only made 3 stops, My parents house, Aurora Great Grandmothers, and then Margo's Work... and she came out with a BUCKET FULL! More candy than I ever got on Halloween! LOL!

It was so cute, we went to Rockydales and got Nacho's and Pizza for dinner, and Wes ate some chedder cheese. When we were done, I found all the cheese in his Kangeroo Pouch! LOL!

Halloween was fun, now on to the next Holiday!

Valerie, The Visting Nurse, a Long Time Friend~

2008-10-27T20:02:00.001-07:00

Ok, Take a minute to laugh! LOL...

This is Valerie, she has been seeing Aurora since she was around 4 months old!!!! She is a very important person in Aurora's life, and in mine as well! She not only has been Aurora's VN, but a very thoughtful person, and has helped us in hard times!!!! I dont know what we would do without her!

When she comes for her visits, Aurora is an ANIMAL! She loves Vals Doctor stuff... And ALWAYS is climbing on her! As you can see in the pics! LOL.............

She loves her Valerie!

2 Weeks and Counting....

2008-10-27T19:46:00.001-07:00

Its been 2 weeks now that Aurora has had a seizure!!! YAY! Here are some pictures from the past couple weeks! She has had her good and bad days! She gets tired VERY easily, and there are some screaming tantrums here and there.... We are taking it one day at a time.......... What else can you do!?! Through this I realized that having your kid do less seems more logical, than having them DO SO MUCH! I always thought Aurora needed to go to playgroup, story time, play dates, park, this that this that! When really just going outside and bug hunting and leaf peeping is just as good! Or ONE playdate a week instead of 3!!!! She seems LESS overwhelmed when we actually go places now! So that is a plus!

My Standing Man!!!

2008-10-27T19:39:00.000-07:00

Mr. Wesley is standing. He has been doing so for about a week now! He is scaling the furniture, and I am sure it will be soon that he is walking! He has grown so fast!!!!

She made it to 3ML, is this good?

2008-10-22T06:42:00.000-07:00

Well, Aurora has been at 3ML's now since yesterday! Which is great because she is now at her new dose....

BUT!

Since yesterday from raising it to the 3ML she is having SCREAMING tantrums! I mean full out SCREAMING! And swearing... and then saying she is MAD all the time.

This worries me because Keppra can cause what is known as "Keprage"....

I am praying that these fits go away, and she settles at this new dose!

I will keep everyone updated. I currently give Aurora B6 to offset some of the side effects...

Keep your fingers crossed that this subsides!

Another good day!

2008-10-20T19:14:00.000-07:00

Things have been good for Aurora. Her hand foot and mouth is clearing up, and she will be up'd to the 3ML tommorow, finally... and then we wait and see if this dose is good!

Wesley is now on antibiotics, he's so junky... and they said this should clear him right up!

Today was a great day. We got out, fresh air... had lunch with my sister... and then came home to play.

Both my kids are sleeping like rocks!

This is my last week of school... so I will be busy finishing and tying up loose ends! And then another semester starts for me in a week! My life is so busy, but in the end I love it. I am accomplishing something, and I will look back at my 4 years of schooling and be VERY grateful when I am doing a job I love, and earning good money!!

Now that things have settled down again, my mind is clearing, and I am starting to relax, and enjoy the little things again in life! Aurora is my heart and soul, and changes everyday in some new way! She is learning all about arts and crafts, glue, scissors, and making projects! Its so much fun... she has went from scribbling, to being able to peice fluffy bug creatures together by herself while using scissors and glue, and small little peices! It makes me want to find my creative side.... which I am not very creative! LOL!

Well.,. that is my little update for tonight. Hopefully tonight will stay this way, quiet, calm and peaceful!

You Know You're the Parent of a Child With E When...

2008-10-19T21:07:00.000-07:00

I wanted to post this... I am a member of a parent epilepsy forum, I find alot of support and friends on this forum that completely understand what I go through, because there children are going through the same thing. This was a thread that was started, and its so true that I had to share with you all! Its gives a glimpse into how life is for my family, and others who are dealing with E! It also shed some light, to laugh for once.... Hope you all dont mind that I am sharing!!

when your daughter has a favorite EEG tech. when your other children know more about E, AEDs, and side effects than the ped. when you're invited for a water play day at the park w/your kids, and you think, "Great! An opportunity to not look like a nut chasing my daughter with the water sprayer!" (For the no-sweating side effects)

when you're glad it rains each afternoon you're at the amusement parks so your non-sweating topa-kid stays cool. when the techs ask your child where is the best place for an iv. when your child grades the tech for how well they did the iv. when you're going for another veeg and your son just hopes he has seizures (so do you!) so he won't have to keep doing them

EMU is not a bird it is a place to have seizures (and you WANT to have them there!) The last 3 books you read were on neurosurgery, epilepsy, and brain plasticity and you LOVED them because they related so well to life! Your child knows what a butterfly needle is because he/she has had so much blood work.

When you explain to a drug rep that you happen to meet at a social event, one who markets Diastat, what status epilepticus is. (true story)

When you are standing in line at the grocery store, overhear the cashier and customer before you discussing medications and side effects, and you realize that the cashier has epilepsy. You intantly have a connection and naturally follow up with recommendations learned on this site!

You are reading a non-fiction book and one of the characters gets blown up in an explosion and has to have surgery on their brain. The surgical explanation of where the shrapnel is in the medial temporal lobe and hippocampus brings vivid mental pictures to mind and you know exactly what they are talking about. BTW- Willow, it's in the new Star Wars book that just came out....

When you can never remember your friend or family member's phone number without looking, but you know the epi's number with no problem!

When you know the quickest route to the hospital in every city you travel too. When you know the EMS crews on a first name basis and they see you in the store or at events they ask how your childs is, AND remember their name. When you no longer think of magnets as the alphabet letters stuck to the fridge.

...when you run into your pharmacist on the street, and he greets you as if you're his best friend (after all, you're single handedly sending his children through college).

...when you see a woman on the train reading a book title "Releasing your Inner Physician," and you're thinking, honey, my inner physician was OUTED long ago! ...when you get a happy anniversary PM from a friend, for the anniversary of having joined this site! : )

when you have to make 3 phones calls, instead of the usual 1 to call your child in sick!!

...You get grumpy when you get a test tube with an ugly-colored top (I am NOT a fan of the orange-and-gray one). ...You hear a joke in a TV show about an obnoxious Hawaiian shirt possibly causing a sz, instead of laughing you think, "Actually, it probably *could*." ...U.S. Customs has suspected you of being a drug dealer. ...You see "scrambled eggs" on a restaurant menu and wonder who on Earth would have an EEG at Waffle House. ...You earn frequent-flier miles on your insurance card. ...You write a restaurant review of the hospital cafeteria for the local newspaper.

When you are thrilled with your child's new best friend because his mom is a doctor who has extensive emergency room experience so you feel comfortable sending him to her house for a sleepover.

when you visit the pharmacy at least once a week and the cashier knows your name childs name address and phone number by heart... ...when your 2 year old says mmmmm when u pull out a poon full of tegretol and keppra and will give up her juice for it.

When you go to the ER for the bizillionth time and your 3yo expresses his preference between the hard plastic and fabric pulse-ox reader for his finger, pointing to the fabric/band-aid one saying he likes it better than the hard plastic paper clip type currently on his finger!

A good day :)

2008-10-19T18:16:00.001-07:00

Today was such a nice day! There was plenty of sunshine....

Aurora and Wesley both are doing much better with there hand foot and mouth, and Wes got put on antibiotics to help clear up all the junk that is just settled into his chest! So hopefully by the end of this week, both my kids will be HEALTHY!

We raised Aurora's Keppra to 2.75ML tonight, and will do the same tommorow morning. I will keep it at this dose until Tuesday night where I will raise it to 3ML! YAY! We are almost there! She has handled the increase so much better doing it slowly, and I am so happy it hasnt totally messed with her! There is nothing worse than watching her crumble from the side effects of this crap! But if we do it slow she seems to handle it fine, and so far still no seizures! FINGERS CROSSED that this new dose will keep them away!!!

We went to my Mothers tonight and had dinner there with the Family. It was nice to not have to cook... and be with close ones! Aurora and Zoey took a bath together like they always do, except Zoey's new thing is pooping in the tub (she is a little over 1 year old)!!!! You should have seen Aurora SCRAM out of the tub when she noticed Zoey popping! LOL... she couldnt stop saying "ZOEY POOPED IN THE TUB AGAIN!! JEEZ!" LOL! I doubt she will take a bath with her again! LOL!

Tommorow we are bringing my sister Amber to her doc appointment to see if she can get her leg cast off... and then shopping! Should be fun.. I know Aurora is excited to get the heck out of this house!

Wesley Stood Up Alone Today!!!!

2008-10-18T19:04:00.000-07:00

Mr. Wesley is a STANDING MACHINE ladies and gentleman!

I was just talking to my friend Amanda today and asked her "when" do babies start standing?

And TADA, Wesley was downstairs playing with his daddy while I was putting Aurora to sleep. I figured Wes needed some well deserved alone time with dad, so I left them downstairs to do there playing and figured he would cry when he was ready for bed!
Well he didnt cry, and finally I thought this is silly, its 10pm, he needs to go to bed.... but all I could do is hear him shrieking and laughing downstairs!
So I come down into the living room to find him sitting... and Kelly says "Wait til you see what he just learned to do!" Wes crawls to the entertainment stand, and Stands right up! YAAAAAY, WESLEY! He let go and everything and just stood there! He was soooo excited because I was soooo excited, clapping his hands, and throwing his head back laughing!

WOW, how time flies! I bet in a month he is walking! He's such an amazon boy! LMAO!

1 week seizure free!

2008-10-18T17:45:00.000-07:00

Well its been 1 week since Aurora had seizures! YAY! I will take a week... one day at a time is how we are going... and any day where there are no seizures is a GOOD day in our book!

Wes and Aurora's hand foot and mouth has spread. Wesley has it in his throat, and then its spread to the outside of his mouth and lips.
Aurora has it in her throat, and its on her lips, and has now spread to the tops of her hands and feet! I am hoping that it clears up within the next couple of days, and that is that! They both DO NOT want to eat... and I cannot WAIT to have the old Wesley back. He is so miserable, and sick from the bronchitis on top of the hand foot and mouth... he barely smiles! I miss my lil man... its sad!!!!

We will increase Aurora's meds again tommorow night. She will go from 2.5ML to 2.75ML and then Monday her morning dose will be raised to the same. I like raising it slower... you can tell she handles it ALOT better than if we just up it all at once!

Poor Aurora is going to miss out on ANOTHER party! She was invited to her friend R's Halloween Bash with a bunch of other kids, but because she has the hand foot and mouth she cant go! It says that you are still contagious for WEEKS after the blisters and bumps go away! And I dont want her to spread it... BUMMER!

Sign the Petition for Epilepsy

2008-10-18T11:38:00.001-07:00

Show Your Commitment. Sign the Petition!

The Epilepsy Foundation is leading the fight to increase funding for research and programs, stop discrimination and improve access to care.In 2009, a new President, 535 members of Congress and nearly 10,000 state legislators will take office. By signing our petition, you can help us persuade them to support policies that improve the lives of the three million American families affected by epilepsy.

More than 3 million Americans have epilepsy (seizures) and 200,000 new cases are diagnosed yearly. For most, there is no cure and many with epilepsy face discrimination and difficulty accessing care.I strongly urge policymakers to support efforts that end discrimination, improve access to care programs, and increase funding for epilepsy research and programs.

Click to the Right, and it will take you to a page to sign the petition!

Do it for Aurora, and everyone else who has Epilepsy.

An ok night, and a better day.

2008-10-18T08:35:00.000-07:00

So last night went OK. Wesley woke up throughout the whole night, and I had both kids up at 4am.. Wes needed his nebulizer, and Aurora Motrin!

Aurora has the hand foot and mouth way worse than Wes... hers is actually spreading to her lips! Hopefully this will be the extent to it, and it doesnt get worse!!!

Today has been good so far, I have had time to clean out and get rid of half there toys in the playroom, and I conquered the dishes! I wont complain!!!

TOO CUTE!

2008-10-17T18:09:00.000-07:00

These were TOO CUTE not to share! This was from the summer at my friend Danielle's house.. they had just got this puppy. The pup was already asleep on the couch, and then Wes fell asleep... and SLOWLY the pup creeped up next to Wes, until it was SNUGGLED with him! It was the cutest thing I have ever seen! I had to share!!

I am offically a Board Of Director.........

2008-10-17T17:56:00.001-07:00

I wanted to share my great news! I got a phone call a couple weeks ago from Audrey who works for the Vermont Epilepsy Foundation. Her and I have been in touch since Aurora was offically diagnosed with E in Feb...

We have attended support groups, and meetings. The Epilepsy Foundation did the BIG CHILL last year, and I helped them raise money by putting them in touch with the Vermont National Country Club, who did a generous donation, and also set them up to do fund raising golf tournements! YAY!

Because of my efforts, Audrey called me and said that they were looking for someone to become a board of director for the Epilepsy Foundation, and they would love for me to be ont here team! I had to write a cover letter, and send my resume... The hiring process consists of my resume being reviewed by the board (presidents, board members and directors, ect)...

They came to an agreement that I WAS A YES!!!!!

So November 9th there is a huge banquet in Burlington at the Hilton, and I will be offically announced as a new board of directors!

I am so excited! I think that being more involved with the Epilepsy Foundation will make me much more comfortable in understanding Aurora's E.

They want to train me to become what is called a "Hope Mentor" which would be someone who can talk to families in need of just a ear, or shoulder to cry on!

I got a letter from Audrey today handing me my first project, which will be to write there annual letter! And then to help with fundraising for a Bowling Tournament that is coming up, THAT AURORA will actually be playing in, HEHE!

So I wanted to shed some good news for everyone who I havent told yet! I feel honored to be part of the fundraising process for Epilepsy. This of course touches home, and I will do ANYTHING that benefits Aurora!!!!!

Here is a fun photo from this summer of Aurora, Daddy and Layla on the four-wheeler!

So far not a peep!

2008-10-17T17:33:00.001-07:00

Both the kids are sleeping soundly! KNOCK ON WOOD! I hope they just get a good night rest! Aurora couldnt eat dinner her throat hurt too bad tonight, and I have a MASSIVE headache from listening to Wesley scream for the past 48 hours! UGH! But at last, SOME SILENCE!

Here are some Fall Fun photo's I took last week of the kids. Gotta love there smiles... I looked at these and thought, this is what makes life so special, even through all the hecticness, sickness, ER visits, Ambulance rides, Medications.... THIS RIGHT here, my 2 children are my life! And what make me breath everyday!

Like I said it never ends!

2008-10-17T15:07:00.001-07:00

Well Wesley screamed all night, and day, so when I brought him into the docs today to get rechecked for his bronchitis, they said he had Hand Foot and Mouth... NO WONDER he had been crying!

And of course Aurora has it too! She has been sicker than a dog today! UGH, enough is enough, cant we seriously catch a damn break!!!!!!!!!!!!!

My Family

2008-10-16T18:39:00.000-07:00

My beautiful and amazing mother!! She is such a strong woman! She inspires me everyday with how she handles alot of BS and yet keeps a smile on her face! I love her with all my heart, she will always be my bestfriend! My Daddy! Yup I am sure you are thinking that this is an odd picture, most pictures are odd! He HATES having his picture taken!!! Unless its an occasion and you catch him off guard, (See previous post about Aurora's dollhouse!)... so this is as good as it usually gets! Or if you ask him please you will get this! So I think the first is better! LOL! My mother and father are young, and I appriciate that, we have always been able to relate.... My parents are fun! And I love them! My sister Amber who will be 19 in a couple weeks! Her and I are complete opposite, bicker at times, dont see eye to eye... but I love her and have had some fun times!!!! My Sister Jessica. She is 17, and an amazing mother to her daughter Zoey! She had her young, yet managed to keep herself in school and will be graduating this year! YAY!!!!!!!!!!!! She has motivation and determination... she's a strong woman!
Lil Miss Zoey... She is cute as a button! My FIRST neice!!!My Sister Lynzee. She is 16, and a rebel! I swear my parents thought I was a handful as a teen, NOPE, Lynzee tops anything I did! THANKS LYNZ!!! LOL... but if you look past her teenage rebelness, she is a sweet, caring, kind hearted person! Aurora loves her Linney, and they have a very special bond together! Lynzee will blossom to be an amazing woman one day!
My other 2 sisters, Lindsay and Nikki! I havent kept in good contact with them, but just reconnected this year! I am so glad I did, it was a missing peice of my life that I am so glad to have regained!!!! I hope to make memories over the years with these guys!

So all in all, there is my family! Thought it would be nice to show you who is importnant in our lives and in my childrens!

The day from hell!

2008-10-16T18:28:00.000-07:00

So the day was HELL!!! PURE HELL! Wesley cried from 1pm until he went to bed at 7pm! I mean full out screaming! Can I say that we got home from the docs today at 12:30, I put both the kids down for a nap, and Wes was up at 12:45 screaming. Woke Aurora up, and they stayed up and NEVER took a nap the whole day until they went to bed!

I am SPENT! I seriously am a walking zombie! Its so tough to take care of a sick kid, but to take care of a sick baby with bronchitis and then Aurora adjusting and having med increases all this week, I seriously feel OVERWHELMED!

Wesley has been asleep at 7pm and has already gotten up 3 times! Its going to be such a LONG night!

On a good note, I raised Aurora's Keppra back up to the 2.5ML tonight, so far so good. I gave her a Vitamin B6 that the neuro recommended to help offset the horrible sideeffects! She had some snack, her vitamin and a glass of orange juice and some tylenol...

So far she is sleeping like a ROCK!!!!! So I pray she gets a good night sleep tonight, she needs it!!!!

And poor Wes.. I dont know what to do for him. All he wants to do is Breastfeed. He has BF so much today I am like a dry well!!!! He will nurse, and I will give him his paci, which usually he will snuggle up and fall asleep, NOPE not this week. Instead he takes his Paci out and THROWS it, and looks for more boob! I dont know if he is nursing so much because he just doesnt feel good and its comforting? Or if he is going through a growth spurt at the same time as being sick!

All I know is that I am literally drained... dead to the world tired! I havent even ate dinner yet and its 9:30~

So I suppose I should get something to eat! Cross your fingers that we have a quiet peaceful night! Aw, it would be heaven!

Wesley is sick :(

2008-10-16T10:07:00.000-07:00

So Aurora and Wes both have been battling colds ALL SUMMER and now into Fall! Its been one sickness after another!

Wesley has been a wheezing machine. Last night he sounded like a squeeky mattress, and at 5am this morning he woke up with a fever of 103... I gave him a neubilizer treatment, and then called the on call doc because it did NOTHING for him! She told me to give him another, and see what that did. So another treatment, a little less wheezing, and he fell back asleep.

I brought him into his normal docs today, and she listened to him, said he sounded terrible.. gave him another treatment, and then steriods, and did a chest x-ray. It showed he has Bronchutitis (sp?)... Poor guy!

I am PRAYING it doesnt turn into pnemonia. So we wait, do the treatments, and tommorow morning he will be seen again. Keep your fingers crossed that this passes and we DO NOT have to have him admitted. It would be nice to STAY out of the hospitals for a while!!!!!

My Little Man Wesley

2008-10-16T02:08:00.000-07:00

More photography pics of Aurora

2008-10-16T02:05:00.000-07:00

Here are more photography pics that I took of Miss Aurora over the summer!

Who needs paper to paint?

2008-10-15T19:03:00.000-07:00

Painting with Auntie Linney! Who said you need paper to paint? I believe in letting the mind explore, and a kid can only be a kid for so long!!!! SO PAINT AWAY Miss Aurora!

Will the storm ever calm?

2008-10-15T18:50:00.000-07:00

So last night was the first night of the med increase. Aurora went from 2ML to 2.5ML. WOW, could she of handled it any worse? I dont think so. She went to bed around 8pm, and woke up around 1am SCREAMING and CRYING so hard. She looked very very drugged, intoxicated! She kept saying "mommy Im sick!" I felt so bad... and its like what do you do? She needs the medicine, its already in her! I felt so bad for her. So we watched the sun come up, and I watched tears stream down her face until about 5am.... she finally fell asleep from exhaustion, but woke up around 7am, and said she had a really bad headache. I could tell, she had that pain face look. So I got her up, Mortin, Breakfast, Juice, and her vitamins, and meds... and we had a great day today! But of course she was still at her day dose of 2ML...

So tonight we brought her brother back to the docs because he is a wheezing machine. They had to give him a neubulizer treatment, and then sent us on our way... so it was late. We picked up dinner at "Rosies" and brought it home. Aurora was STARVING, so I figured she would chow down when we got home. She started to eat a fry, and then I saw she had a certain look, not sure if it was a seizure, or the fact that the fry didnt suit her... she spit it out. And then puked a couple times (not much)... And said she didnt feel good. I got her calmed down so she could eat SOMETHING... but the whole time she had that seizury look to her... but didnt have one. I gave her a nice hot bubble bath, pj's a good back rub, and she fell asleep.. where she is right now next to me, snoring away!

I AM PRAYING for a silent, uninterrupted night of sleep. Aurora needs it! She already took 2 naps today, which is VERY RARE! Poor girl is so tired from this month of HELL! And on top of it she is still sick with a nasty cough... I gave her neubulizer treatment before bed, so she is breathing soundly...

Tommorow will be a med increase for the daytime. going from 2ML to 2.25, and tonight instead of the 2.5ML we gave her 2.25ML... to give her mind and body a break!

Did I mention I HATE E?????? I know alot of my readers are mothers to children with E, and you all know how I feel, especially with this med increase crap... it takes Aurora so long to get back to normal... and the one thing I hate HATE about the med increase is how it takes the sparkle out of her eyes! They look so dull, and bloodshot, glazed... tired! So sad.

So PRAY for a good night with NO seizures for us! I will update tommorow! We will be getting up, dressed early, to go pick up my sister Lynzee (aurora's Auntie) and going to use her library card to rent some books... she has yet to go, and it was a present from one of her good friends for her birthday! She is very excited!

A mother...

2008-10-14T14:46:00.001-07:00

This was sent to me from my friend Nikki Barrows:

MOTHERS

Real Mothers don't eat quiche; they don't have time to make it.

Real Mothers know that their kitchen utensils are probably in the sandbox.

Real Mothers often have sticky floors, filthy ovens and happy kids.

Real Mothers know that dried play dough doesn't come out of carpets.

Real Mothers don't want to know what the vacuum just sucked up.

Real Mothers sometimes ask 'Why me?' and get their answer when a little voice says, 'Because I love you best.'

Real Mothers know that a child's growth is not measured by height or years or grade...It is marked by the progression of Mommy to Mom to Mother...

The Images of Mother

4 YEARS OF AGE - My Mommy can do anything!

8 YEARS OF AGE - My Mom knows a lot! A whole lot!

12 YEARS OF AGE - My Mother doesn't really know quite everything.

14 YEARS OF AGE - Naturally, Mother doesn't know that, either.

16 YEARS OF AGE - Mother? She's hopelessly old-fashioned.

18 YEARS OF AGE - That old woman? She's way out of date!

25 YEARS OF AGE - Well, she might know a little bit about it.

35 YEARS OF AGE - Before we decide, let's get Mom' s opinion.

45 YEARS OF AGE - Wonder what Mom would have thought about it?

65 YEARS OF AGE - Wish I could talk it over with Mom.

The beauty of a woman is not in the clothes she wears, the figure that she carries, or the way she combs her hair ... The beauty of a woman must be seen from in her eyes, because that is the doorway to her heart, the place where love resides. The beauty of a woman is not in a facial mole, but true beauty in a woman is reflected in her soul ... It is the caring that she lovingly gives, the passion that she shows, and the beauty of a woman with passing years only grows!

Please send this to 5 women today in celebration of Women's History Month.

If you don't, nothing bad will happen, but if you do, something good will: you will boost a Mother's spirit

Talked to the Neuro tonight....

2008-10-14T14:38:00.000-07:00

I talked to the Neurologist tonight. She had gotten the blood work back from Friday night on Aurora, and it showed her Keppra Level was at a 3! Meaning she barely HAD ANYTHING in her system! No wonder why she had seizures!

This showed that she is on WAY to low of a dose.

So over the next couple weeks she will go from 2ML twice a day, to 3ML twice a day!

I am praying PRAYING for NO serious side effects... there is risk of behavior problems with this medication. And I dont want her to be a walking Zombie!

I am hoping with proper sleep.. fresh air, and good food and fluids, vitamins, and ALOT of love that she will get through the med increase just fine!

The Neuro said we will hold off on any MRI or EEGs for right now, until we get the meds up and see how she does!

Sounds good to me. I dont want to tramatize or tourture her in ANYWAY!

I will keep everyone posted on how this all goes... Please send some prayers our way for NO seizures!

Wanted to share these pics, they were taken when she was 2 months old! Yes I am still browsing her old photo's on my computer! She was SOOOOOO dang cute, and of course still is :)

Aurora when she was a baby........

2008-10-14T13:14:00.000-07:00

These were from the desktop. AWWWW, its so crazy to see how little she was! Its makes me want to cry... I miss her as a little baby :( But love my amazing 3 year old!

She was so spunky even as a baby...

She STILL is in our bed, and sleeps right next to daddy!!!!!!!
I took these in her crib she was 2 months old!

Some oldies.

2008-10-14T13:00:00.000-07:00

I was looking through old photos on my desktop. I use mostly my laptop, and was wondering what pictures I had on the other computer... to my amazement.. ALOT of oldies of Aurora when she was little!

These ones are from the week before Aurora had her brain bleed... and then in the hospital...

These 2 were 5 days before her bleed... 3 days until christmas.

Her in the hospital....

Randoms to share.......

2008-10-13T20:38:00.000-07:00

Aurora and her buddy (my best friend) Margo.
Hanging out in her tent...
Wesley and Aurora...

Aurora and one of her favorite people in the whole wide world, Her Mammy.

Enjoying a nice white winter!
Kisses from Layla, her puppy.

Aurora and her Mammy.

Aurora and her buddy jumping on the couch...

Brother sister love :)
Aurora with R her friend.
Aurora and her Great Aunt Bonnie............. She loves Bonnie!

Awww, buds!

Camping this summer......

2008-10-13T20:02:00.000-07:00

We went on a camping trip this summer in Vermont... Close to home, but yet far to feel like a little break. Both Wesley and Aurora were sick... but we made the best of it... it was fun and nice to take a break from home! Aurora loved camping... and Wes was a trooper!

On our campsite.
I put the camera on timer, and snap this photo of me and my loves!

Kelly and Aurora (Aurora's daddy) were dancing around the campsite to the music we brought!
Auroras favorite part of camping... THE GLOW STICKS she found!

She thought they were SOooooo cool! LOL!

My Aurora turned 3!!!!!

2008-10-13T19:54:00.000-07:00

A letter I wrote to Aurora on her bday!

Happy Birthday my sweet angel bug, my Aurora Monora, my sugar plum, my nooner booner!
You turn 3 today! How much you have changed since you blessed me with your exsistence on this very day 3 years ago. God gave me an amazing gift, he blessed me with you... he chose me to be your mother, and for that I am forever grateful.
You are smart, funny, outgoing, rambuncious, a social butterfly, and you shed light into everyones lives who you meet!
You have came so far in your 3 years... battling some major health setbacks at times, and then being diagnosed with E... but you are such a STRONG person! When people say you will be the president one day, I think they just might be right! You have the strength of a hundred nations... your heart shines brighter than the sun! There is nothing you wont try, and I have yet to meet someone who doesnt leave with a bright smile after spending all but 1 minute with you
I love you so much Aurora... and may turning 3 bring you lots of learning, sharing, caring, hugs, and most importantly good health!
Love always... Mommy!

Aurora and Wesley "MY MODELS"

2008-10-13T19:25:00.000-07:00

I just got into photography this summer... and of course my favorite subjects are my amazing children! Here are my 2 little models, Wesley and Aurora!

Some pics to share.

2008-10-13T19:02:00.000-07:00

Aurora and her brother Wesley. She is the best big sister to him... so lovey and motherly!

Aurora swimming in the river on July 4th.

Aurora having a blast on the trampoline with friends on the 4th of July. Trampolines are OFF limits now, this day ended in a seizure!

Such a beautiful girl, I am so blessed!

Aurora and her baby dolls... like I said, she is very motherly :)

This is Aurora's dog, Layla... she is a little over a year.

The past couple of weeks........

2008-10-13T18:39:00.001-07:00

So a catch up... Aurora was offically diagnosed with Epilepsy almost 8 months ago... She had her first seizure following her 2 month vaccinations, and then continued to seize for 3 weeks until she had an intercranial bleed. Some docs give reason to believe it was the vaccinations, and others that say it is UNKNOWN... I do not vax her anymore and have no intentions on doing so.

She had a STATUS seizure (which is when a seizure doesnt stop on its own) when Wesley was 3 weeks old. This was really scarey. I hadnt researched or learned about Epilepsy yet, so I didnt know what a Status was, and I didnt know how it was treated. All I knew was things I had heard, such as if a seizure lasted longer than 25 minutes, there could be brain damage. Aurora's seizure went on for 35 minutes, so of course you can imagine I was FRIGHTENED of this possibilty!

That night, as she slept from the emergency meds they gave her, I waited and waited for her to wake up. I was praying silently in my head that she would wake up look at me and say something! Confirm my fear that she was injured from this seizure. Of course my daughter is a solider, and did just that. She woke up, looked at me, and said, "I want a popscile mommy!" I thank god to this day!

They put her on Keppra 2 x a day... and it seemed to keep the seizures way for 4 months. July 4th, she had a seizure while playing on the trampoline with some friends.

And then the weekend of her birthday (which had to be canceled) she had cluster seizures. She was rushed to the ER, where they gave her ATIVAN (which is an emergency med) she in return stopped seizing, but had a bad reaction to the meds, which made her hallucinate, scream, and then throw up... She will not be getting that again!

After this episode her meds got raised in the evening, and stayed the same at night. She went 2 weeks, and then this past weekend, she again went into clusters. I think that because she was getting sick, and then Wesley kept her up all night, her threshold was low... Her meds got raised again this time during the day.

She has adjusted fine. And is back to herself. I am currently waiting to hear back from the Neuro in regards to a new MRI, and a 48 EEG.

On a more positive note:

Here are some pics from when she got home from the hospital where my father was waiting with a BIG birthday suprise since her party had been canceled!

Aurora Monora

2008-08-30T09:14:00.000-07:00

My Aurora just turned 3 on September 25th! She has grown so much in 3 years, matured, blossomed! Its amazing to watch, and I feel so blessed everyday to have such an amazing child!

I wanted to create this blog so that I had a place to come and vent about Aurora's epilepsy... and what is going on in my life during this time. Its been a long road this past 3 years, and things are still not quite settled!

This blog is dedicated to my Aurora.....