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

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!

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

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.

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

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

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...

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!

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!

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!

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

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

Some Pictures.

Some new pics.

A long overdue update.

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!

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!

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.

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!

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.

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!

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!

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~

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....

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!!!

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?

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!

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...

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 :)

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!!!!

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!

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

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.

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!

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.........

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!

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!

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

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!