EEG leads went on this morning. They just downloaded info and then went live with her reading - so I really don't know when I will know anything from that. It's playing live on the screen in our room, but I have no idea how to even decipher it. It's a lot of squiggly lines and sometimes they are bad and sometimes they are good - and I have no idea. Molly, however, enjoys seeing herself on video and then "chewing' or scrunching her face to make the black lines jump at will.
For the first time ever, Chris was able to bring both girls up for a visit. They stayed for nearly three hours. The girls treated Molly like a princess and Mommy like a trampoline. Kennedy asked Molly how she was and then gingerly climbed up in bed with her to play some Wii. The whole family was entertained by the clowns who came to visit and blow bubbles and sing songs about bodily gasses. Zoey and I went for walks to the "mountain" or fountain and we purchased treats at the gift shop. Kennedy and I took a walk to the healing garden to sit and chat. She had very important things to discuss with me, she said. Turns out, she's just conflicted about which animal to get for her reward from Build-A-Bear. We were supposed to go tomorrow. A prize for her exceptional behavior while Molly was at summer school and she was tasked with helping Mommy with Zoey. Of course, no visit is complete without tears. I could see poor Kennedy welling up even before it was time to leave. She just wanted us all home. Then she went to jump really hard into my arms and missed, connecting her head with my chin. Thankfully our nurse came to the rescue with a personally stickered ice pack!
While the family was here Molly had neuro rounds with a large team (Kennedy couldn't believe they were all for Molly). And she had to give more blood. No real answers, but good news - she didn't overdose on alcohol or any controlled substances she shouldn't be into.
For my pharmy friends - there's a good chance in addition to whatever puts her in these slumps, that she is super duper sensitive to her Depakote. She's been on it since she was 4 with very little fluctuation of doses. She takes it 3 times a day. Very low dose - 125mg/125mg/250mg. She 4'10" (147cm) and weighs about 80lbs (36.5k). Her level at 8:15pm (after getting her night dose at 5:45pm - so peak) was 109, apparently her trough this morning around 9am, before getting the morning dose was well below 50. I don't have exact numbers - but she's apparently metabolizing this drug in a rather weird way - considering every level we've done recently, trough or peak, has been below or barely above therapeutic. We added the extra 125mg to the evening dose in May to try to control mood swings (not seizures). It's helped as we don't see the swing - but we do see the mood.
Anyway - here we are. In a corner where we've been before (although never in this cute room). You are left choosing between the kids, choosing what you think is right for her treatment, choosing to bring her in. The choices you make don't always have a right or wrong answer but every choice seems to have a consequence. Yes, we knew Molly had seizures and needs when we decided to have Kennedy. Yes we knew this even more significantly when we decided to have Zoey. Those decisions were not made lightly. I truly know that whatever guilt I feel about not being there to tuck them in and having to be with Molly for these medical adventures, that Kennedy and Zoey are growing up knowing the value of each person. Kennedy knows Molly cannot physically and sometimes mentally complete the same tasks she can - but she knows that doesn't make Molly any less valuable a person or a member of our family. Zoey knows that her big sister may scream, she may growl, she may shove - but she knows how to look her in the eye, share her love and give her a huge hug.
We are always learning for the girls and from the girls. We are human and we make mistakes - a lot of them. But as I sit introspectively in my little corner of this little room, asking Molly for the 400th time if she's okay - I'm ridiculously grateful and as worried as I feel, I'm strangely at peace. More on that at a time when I've slept more than 3 hours in the past 36!
But, for right now, she's doing okay and she very happily ordered her meals and played minion rush and watched Scooby Doo on repeat! And we were able to FaceTime some goodnights to the sillies at home. Not too bad a day!
|Special treat for dinner with Daddy!!|