EEG Shows Zero Signs of Epilepsy

Annabelle had a terribly rough night Thursday in the hospital. In her defense, there isn't anything warming and 'home' about a hospital baby-jail / crib. And to add the worst head-dressing on her noggin and beeping machines, I really don't blame her.

She woke at 2am in pain and then never rested much for the time between then and the rest of the morning. She did fall back asleep around 6am and slept for a good hour and a half, of course I struggled to follow suit. I just prayed the day would end soon for the both of us.

Doctors were in and out of our room most the entire day. I have to say, we had the best experience on the Epilepsy Monitoring Unit last week at MCV. The nurses and staff were beyond wonderful. The Residents seemed very knowledgeable and intrigued in Annabelle's case and eager to be part of our stay. The nursing staff made the most impressive accommodations around Annabelle's feeding needs. I was very grateful and impressed, they made the stay as enjoyable as it could be under the circumstances.

So What's The Word?

Unfortunately, what I didn't know is that they were only looking for signs for true Epilepsy. I never thought this was the case (the only thing they were looking for), but I guess it's good to know now that this is NOT what is happening. The doctors told us there were no signs of Epileptic Seizure activity or concerns about damage from Epilepsy. Because Annabelle didn't have a true 'episode / spell' while we were there, it is hard to determine what exactly is causing the episodes that she is having at home. The doctors asked if we wanted to continue to stay for a couple more days to hope to capture an episode and I declined. If there weren't signs after 24 hours of the most dangerous scenario from seizures (true Epilepsy) then I wanted to go home.

While this did not give us a "Diagnosis", this is really great news. If the neurologist was able to walk into our room and tell us Annabelle absolutely has Epilepsy and it's happening this frequently, that would be devastating and also not helpful in all the other areas we are having problems. I am grateful for this news. This time fortunately, a negative test / procedure is a positive light for Annabelle.

The reason we wanted (Doctors wanted) Annabelle to have this testing done is to rule out our final biggest explanation for what is happening. At this point, we have explored most everything we can to explain what could be wrong with Annabelle and her little body. With each negative test result, it provides us with even more reason to continue our route to meet with Dr. Teasley and her team to explore Mitochondrial Disease. We are scheduled to meet with her and the rest of the Neurology Team on August 22nd. 


I asked the doctor to let us leave as soon as the discharge papers were ready, shortly after, the EEG Technician came back into our room. The moment Annabelle saw him, she ran into my arms and cried so very hard. I felt terrible for her, I just knew removing all those probes and monitors were going to be terribly painful again. AK was at the hospital Friday morning, he's never been part of these painful procedures before.. and to be honest, as much as it truly sucks being the only person to go through this alone - Annabelle is a daddy's girl and I feared if he were in the room then she would look to him for HELP that he cannot provide. He decided to stay and help, although I cautioned him about what he was going to see. I can't say it was good for Annabelle though.. just like I feared, she gave up on me and immediately started begging daddy to help her. He too got to let her down in her pleading, as she laid there with both of us holding her down as the EEG Tech began doing his work. :( She put up a helluva fight however but fortunately it didn't require strapping her back into the make-shift straight jacket. He used a solution to moisten each area that was attached to her noggin and with a bit of scrubbing, they began to pull off. She was a mess and again, exhausted from her fight. I washed her hair before we left and AK and I gathered all our things and made our want to the elevators. Annabelle looked like a beaten, defeated little zombie with a red, puffy, swollen head and bloodshot eyes. She truly looked like she had just been thru hell, and really, she kinda had.

She cried the entire way home and when we walked through the door, we immediately put her into bed. Mady greeted me at the door with a frown and deeply apologetic for the way she behaved the night before. She asked me to kneel down to her level and she apologized and gave me a big hug and kiss. I didn't take it any further, I just let her tell me the words she wanted to say and told her that I forgave her and I loved her too, so much.

The rest of the weekend was good to Annabelle, she caught up on plenty rest.. and slept, a LOT.

You know, when I watched the EEG Tech begin the setup for the test and I stood beside my daughter as she screamed her head off for over two hours, I kept telling myself "He isn't hurting her, she is just mad and upset that she cannot move..." I was wrong about that. He was hurting her. Each and every single probe of the billion that he put onto her head left bloody scabs all over her head. Her forehead has circles of bloody scabs and there are the thickest scabs all OVER the top of her head in her hair. My heart absolutely shatters. I cannot imagine more of a terrible place than what my daughter is going through. . . to be strapped tightly onto a board, unable to move for over two hours as doctors slowly freaking torture you around your head. To put salt in the wound, your mommy is standing right beside you and won't help!! :'( What have I done? God please, this has to stop. It really does. This little girl cannot go through more than what she already has. This is beyond horrible. Hear our prayers and help us reach the end of this nightmare soon! :(




And after all this, Annabelle still greet strangers and anyone that walks into her house with a huge smile and the biggest, strongest hug and kiss you can imagine. How this HELL she has endured hasn't deterred her from the incredible little girl she is, I don't know. 

All I do know is that Annabelle Grace is stronger than I could have ever imagined. She's stronger than I could ever be.

A few added pictures from the visit at MCVs, EMU.

Sneaky little girl and her attempts to find food.

Breakfast before heading to the hospital.

Bath time in mommy's bathroom while everyone else is getting ready!

SKYPE with Aunt Kristy and Char-Char, they wanted to sing the Tigger-Song for her. And it brought much deserved smiles :)

"DESPITE ALL THE RAGE, I AM STILL JUST A BABY IN A CAGEEE!!"

Sissy came to visit and color

There was a crazy storm outside and we had an excellent view to watch it cross Richmond :)

Sweet Dreams baby girl

Child Life brought a pup to visit.. Annabelle wasn't feel very good to enjoy :(

This little girl is every bit of my strength!

Getting ready to take everything off

The removal process was less than fun :( Time to go home baby.