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!

The day from hell!

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 :(

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

More photography pics of Aurora

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

Who needs paper to paint?

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?

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...

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....

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........

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!