and sometimes we have nights like these

Molly has been remarkably seizure free for a long time now. I'm really not sure of the exact amount of time, but it's been at least three years or more. This is important to know for the set-up of events that have unfolded.

Molly still takes anti-epileptic drugs. Molly also has autism, temperature regulation issues, gait abnormalities and more.

The summer slump began a few weeks back with a nasty eye rash no one could actually identify. Every summer (and fall, maybe spring too) we go through this with Molly. She gets fatigued easily, her color drains, she retreats into herself more and more, and she some times regresses behaviorally. The past month has certainly followed these disturbing but not unfamiliar patterns, however the past 4-5 days have been worse then we have ever seen. Her behaviors rival that of a very tempermental 3 year old (and I have one as a basis for comparison). Her fatigue leaves her barely able to climb the stairs after summer school. She's wobbly and she is testy. Fun right? We assumed maybe puberty was paying us a visit until yesterday morning. I looked at Molly, who had left things strewn about, who didn't remember key elements of the previous day. I asked her to please turn off the bathroom light. She stared right through me. I asked her again, gently nudging her. She turned and walked somewhere, and I reminded her again to please turn off the bathroom light. She finally walked into the bathroom. I waited for her to simply switch off the light. Nothing. I walked in to find her staring in the mirror holding a wash cloth. I asked her to tell me what I had asked her to do. She looked at me and said "Um, take my medicine" ( I was holding her inhaler). I said no, turn off the light, but go ahead and wash your face. She came back out and the light remained on. Finally, I asked again and she turned it off.

Throughout the day and today I would notice her missing pieces. She'd forget routine tasks she'd done for years. She'd insist we did something last night when it had truly been days before. When you've been down the road we have, it is very hard not to assume seizures are rearing their head again. Or if it's not seizures - WHAT THE HECK????

So, I called Boston multiple times, I emailed and went back and forth. When Chris got home tonight I was all packed and ready to move. Molly and I came to the Yale ER. She was triaged and admitted straight back. We got urine, blood and an IV. She's on pulseox. She had a lovely full eye roll/ stare as she was getting her IV. And now, we wait - for what, I have no idea. We've been here before. Maybe we'll get upstairs and get hooked up for EEG - maybe not. It's truly anybody's guess.

Tonight I just wish for sleep. I'm thankful I grabbed my computer for entertainment and connection, that she is coherent and happy enough to play with her iPod and scroll through YouTube Kids videos. We ate dinner, we're good - this isn't our first rodeo. Tomorrow I will deal with the two children at home who understand why Mommy has to go with Molly, but don't really understand why Mommy cannot be in 2 places at once. They understand Molly needs me, but they don't truly comprehend the inequities of it all because in reality they need me too.

Today was the first day in a very long time where I felt the tears welling up behind my eyes. This stuff doesn't really get to me any more. Sure, we worry and sure we wonder, but rarely do I get to the point of tears. But the tears were ready today. It was overwhelming perhaps. Molly tried to settle on the couch and get some comfort from my touch, which she really needed, but she couldn't stomp trembling and jerking about. Zoey, who refuses to nap but was 3 year old tired at 4pm - fought for a spot on my lap and then passed out as she does, my beautiful weighted blanket. And then Kennedy sadly looked on knowing there was no spot for her at that moment but she wanted pictures for her scrap book and I tried to appease by air printing from my phone (thank you technology) And I wanted to be there for each of them and I knew dinner still needed to be made, meds given, etc and I was emailing Molly's doctors to develop a plan and it was all just TOO MUCH! I kept the tears in so I didn't alarm my already super sensitive kids, but man - what a day.

And so here I sit, waiting to figure out the next steps. Knowing that what happens here tonight, very much affects what happens at home. Being a special needs parent comes with a lot of extra luggage and not quite enough room to store it all.

I'll keep you all posted, but I wonder if we'll know much of anything until Whole Exome Sequencing results come back at the beginning of September.

Hugs <3

UPDATE -  Because we have such an incredible team - she is being admitted and we will have a Video EEG tomorrow. Levels were off on some things so we'll most likely have blood redrawn tomorrow as well. It's 12:10am and she is still awake and overstimulated, and way too excited to be going upstairs. It's been a while and she likes ordering breakfast - or something like that! If you have a chance to think of her and send a quick prayer for answers, we'd really appreciate it!

And, can someone tell her that now it's 1:10am and even though her room is adorable, she should probably go to sleep!