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.