We’ve made it through a week and a half of summer break (aka intercession for kids in year round school like Becca).
I wish she would get the memo that with no school she can sleep in and take naps at her leisure. Neither of which is she doing lately. Don’t get me wrong, I’m glad the seizure monster isn’t making her have the need to sleep all day. However many parents know, the child who does not nap as they should turns into some kind of scary monster around diner time. I always know the days Becca didn’t nap at school. The cranky, whiny Becca comes out around 5pm. Couple this with her then not wanting to go to bed at her usual time, which for her is still 7pm. She has always self regulated herself to be ready for bed at that time. I remember as a baby she was hilarious, she could be WIDE awake at 6:45, even 6:55. But no sooner than the clock hit 7pm and she was laying down and going to sleep. It was always the strangest thing to see, but her internal rhythms had very accurate time telling abilities.
As I type, “She who does not sleep” laid down on the floor for one of her famous cat naps. She is also known for just laying down and taking a 5-10 minute nap and waking up ready to go. She is super cute these days because she now “gets” the concept of a blanket. So she will pull a nearby blanket over her, even spare clothing laying nearby will do as a blanket.
We’re muddling through this intercession. She isn’t driving me crazy (yet) with her need to get into anything and everything she isn’t supposed to get into. I guarantee you that by July 18th I will be more than ready to deposit her at Easley Elementary school.
Seizures are status-quo. She has good days and not so good days. The not so good days remain much better than last month. However we are still seeing more not-so good days than we were before we messed with her medications and the supplements. I still feel frustrated and hopeless with the Ketogenic diet. I still need to start deciding is it worth it all.
You may or may not notice I added one new thing to our blog. A button, along with the “about us” (or whatever I renamed it to) there is now a “Becca’s history”. I created a separate page that has all of her old Caringbridge journal entries. As of right now they are in reverse chronological order with no fancy formatting. However that may change if I ever get whim to do so. (so be warned if you start reading the order may spontaneously change in the next month or so).
Anyhow I think that is about all to report on Becca.
oh wait – I know. In honor of her birthday she now has TWO Mylar balloons to play with right now. She is so incredibly happy.
One thought on “Status Quo?”
Hi – I stumbled across your blog and thought I’d say hi. We share some similarities – my daughter has epilepsy and is also on the ketogenic diet. It’s so very hard – and we’re frustrated and wondering what the point is also. Just thought I’d “out” myself!