Update from yesterday..

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!!!!

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!

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!

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

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)

Try JibJab Sendables® eCards today!

Update on Aurora

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!