We are in Boston.

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

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

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

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

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

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

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

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

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

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

Home from Boston.

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

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

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

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

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

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

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

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

18 Weeks and counting...

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

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"

Allergic Reaction to TREE NUT Pictures~

Seizures just couldnt stay away!

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!!!!!