Raquel's LKS Journey: Plugging Along

After Raquel's seizure in kindergarten on her 3rd day of class, she had two more in school at the start of the following week. I assumed the initial seizure was due to her meds being out of whack, so I was extremely diligent about making sure she had all of her doses in her at pretty much the same time of day after that. And she remained seizure free at home.

I was surprised last Monday when they called me shortly after I dropped her off. The nurse told me she had a seizure during her initial circle time, but it wasn't as bad as the first one - she didn't turn blue at least - and by the time he got to her classroom, she was up and around and even having some breakfast. I chose to keep her there in class and see how she did. Besides being tired and falling asleep off and on in the car on the way home, she seemed okay. Tuesday's seizure was pretty concerning, lasting far longer than they do when she has them at home, and although she thankfully didn't turn blue again, her complexion did change and she was a bit out of sorts. I immediately went and got her. She fell asleep on the way home and then slept and slept off and on for the rest of the day and then all through the night.

I didn't sleep much last Tuesday night, was concerned about what was triggering these things if all her meds were in check. I knew she wasn't overly tired because she seemed to have really caught up with her sleep, and she definitely wasn't stressed at home. I was just at a loss. When I dropped her off on Wednesday, I left in tears. I know that made the teacher feel bad, but part of me wanted to sit in the parking lot holding my cell phone waiting for Nurse Brian to call me to come get her. Instead, I needed to go to work. Thank you, Terri, for coming in my office and letting me cry on your shoulder. It helped.

I can't begin to describe what it feels like having a non-verbal child who cannot tell me what is bothering them, who is unable to use sign-language due to lack of fine motor skills. It is a constant guessing game. I do not know what was stressing her during class, if that is what was occuring. Maybe it was stress due to transitioning from preschool to kindergarten. I don't know. And I still don't. But when I picked her up last Wednesday at the end of class, I was told she had a great day. And she hasn't had a seizure in school since. I know that has only been 4 days if you count today, but I will take it. The cup is half full, right?

I have a call in to Dr. Mower, at Nurse Brian and the school district's request, to put a seizure control plan in place. They want her neurologist to specifically document what he wants them to do and when to do it when a seizure takes place, ie. when to administer meds and what kind, when to call 911, etc. I'm waiting to hear back from him. I did hear back from the Ketogenic Diet nutrionist about scheduling an initial consultation. I just haven't wanted to call her back yet. :)

Here is Raquel in class, happily ready to get started in circle time.

Me and my girl waiting to join up with the rest of her class coming from the bus stop. When I've walked over by her school on weekends, I would intentionally run up and down all the stairs just to get some extra cardio in. I no longer like them. And there shouldn't be that many. Really.