Yesterday was Fun Friday at the kids school. It is a day of relaxed learning, show and tell, and lots of fun stuff (and on this day, a birthday party for a classmate AND a teacher!). Everyone likes Fun Friday. So when Rosalie wouldn’t get out of bed I was a bit surprised. I tried getting her up by going in 3 times to shake her shoulder, steal her blanket, and just verbally tell her to get up. I finally hollered down the hall to her “if you don’t get up now, you won’t be eating breakfast!” I heard her get up and then I heard very odd, asymmetrical footsteps. I turned to the doorway just as she grabbed ahold of it – clinging onto the wall for dear life. I asked “can you walk???” and she said “no”.
Apparently Rosalie had just come out of a seizure. I had no clue.
You will know if you’ve read my blog for any length of time, that Rosalie has Epilepsy as well as Autism, and that her seizures are getting worse – closer together, harder to control, they’re changing from complex partial seizures to generalized, tonic and atonic seizures. She is now having ‘spells’ where she can’t walk 3 – 4 days a week.
I took her by the hand and as we started walking down the hall I realized that it wasn’t just her hand I needed to hold. So I held her under her armpits and helped support her weight. I had her lay down on the floor so I could change her for school. As she laid there, she stared up at the ceiling for 10 – 15 seconds and was completely unresponsive. No movement, no blinking, just staring. I waved my hand in front of her face, called her name, no response. After I got her dressed, I helped her to the table. She could not swallow very well, and refused more than a few mouthfuls of food. When she took her seizure meds she gagged horrifically. She was still a little bit tipsy when I dropped her off at school, but she was walking on her own. They have nursed her through so many of these seizure episodes that I wasn’t concerned.
I got a call about an hour later. Rosalie had another small seizure and was having trouble walking. Instead of asking to lay down, she was asking to go home. This was a first for her – she loves Fun Friday. She loves her school. I went and picked her up and she spent the rest of the day a bit unsteady but no further seizures.
Fast forward to last night. I had promised Rosalie that she could spend the night with Grandma. I just had this growing feeling that she would have a seizure in the night and that Grandma wouldn’t hear it. I just didn’t feel right about that, so I spent the night with Rosalie at Grandma’s house!
I went to bed right next to Rosalie at 9:30pm. I woke up at 2, 3, and at 4 a.m. Each time I studied Rosalie as she slept and I had my video camera ready. I told myself that I was just being silly staying awake all this time. So I fell asleep again at 4:30. I don’t know what woke me up at 5:55am – I have to believe that it was God nudging me or something. I woke up, turned on the light, then started the video camera and caught this generalized seizure on tape. It didn’t sink in that she was in the middle of a seizure until half way through the taping. After I turned off the camera, she was still in the midst of the seizure. Was it a grand mal/tonic-clonic seizure? Or just a cluster of generalized seizures? I don’t know.
But what I do know is that I got 8 minutes on video (parts 1 – 3). Then there were the 10 minutes it took to contact the doctor, get dressed, fret (briefly) over whether or not to take her to the ER. I directed Grandma to take the camera in the other room and take video of me helping her out to the car. Little did I know that she was still having her seizure. It took me 2 minutes to get her out the door, and after I got her outside she started throwing up again. I leaned forward to let her vomit on the grass and that’s when she lurched forward and we did a sort of slow motion fall into the grass. As I was looking at my daughter flopping around, vomiting in the grass I realized that next time I was going to have to call the ambulance! I can’t handle a 72 pound child in the throes of a full blown seizure!
Here’s what happened as I tried to walk her out the door – a full 18 minutes after I started recording the first video:
This story isn’t over yet… it’ll take me a while to draft the next addition… Rosalie’s second and third grand mal that sent her to the E.R. for the second time in 24 hours and the stay in the hospital. *sigh*
Thank you that the doctors are trying diligently to figure out what is going on in my little girl. Please let the video EEG show something – some hint as to why she is having all these seizures. “I know my redeemer lives, all of creation testifies, this life within me cries that I know my redeemer lives… forever I’ll proclaim…” Bless my little girl’s brain with protection. Thank you that you made both our trips through the ER as minimally invasive and traumatic as possible. In Jesus most holy name I praise you – Amen!