Maybe home tomorrow

John only had one seizure today that I identified,but we will find out tomorrow what the testing sees. We are talking home tomorrow, hopefully. Wewere blessed again today with visitors to give me an hour or two out of this room, and John got spoiled with more hands on activities and toys. He’s sleeping now, but I just noticed his face is off color— hives or fever or something else? Timewill tell, I guess. But if you are going to get sick, this is the place to be.

Day three

Despite a normal sleep last night, we are tired. Or maybe weary, ready to go home, hopeful we will get the answers we need. 

Success?

The combination of being sleep deprived plus the excitement of storms and fear for Aunt Jill’s safety after seeing her tornado pics was enough totrigger a little spasm of quick, little seizures. Now we are slap-happy and ready to go to sleep whenever I can get him settled down. 

I’m so grateful for family who came up and sat with John today so I could get a bit of fresh air and recharge for the challenge of caring for a six-year-old boy in a confined space. 

Rise and shine

4 am, time to start up again. They just informed me we will need to stay up until 3 pm. Oh goodness... it’s going to be a rough day.

Update at almost 10 am: mama is wiped out, John entertained with iPad games, legos, and writing .For once, we are hoping for a kick up of seizures today, so we can maybe head home earlier than Friday. More seizures means more answers.

O.T.

That tongue hanging out with any fine motor skill, that mouth opening and closing with scissor use, thought to be a cute quirk, actually one of the many reasons we are testing this weekend and again a different test in July... this little guy needs speech, OT, and probably more pieces to his education plan in hopes that we can help him keepup with his classmates. A repeat kindergarten won’t really help, because it’s not a maturity issue... that tongue out is one more sign of damage occurring in that adorable head of his. And we need the damage stopped.

One more hour

Sleep deprivation: it’s not just for the patient.

Late night

We didn’t see any seizures until 7 tonight, and then a few small ones popped up. To speed thingsup a bit, we are doing a sleep deprivation test. So, Gus Gus and I get to party hard until midnight. Then he gets to sleep for four hours, awake at 4 am and stay awake for more stressing him out.We hope for no tonic clonics, but plenty of absence seizures. And a lotta patience for this Mom!

We have paint with stickers, play on an iPad, watch movies, puzzles, board games, card games, writing journal,books, and activity pages. And lots of tea for me!

Ready to roll

First thing first... a couple dozen electrodes glued to his head. Then testing to make sure the electrodes are all hooked up correctly. Then, we stress him out with a strobe light and whirligig. And now, we play and they watch. They watch for electrical disturbances, and visually watch for abnormal motions or behavior. 

Test day!

Gus Gus and I are spending some quality time together this week at Children Mercy’s epilepsy monitoring unit. Basically, it’s an inpatient 96-hour EEG to road map his seizures, to identify the quantity and type of seizures he is having. Why?Because he’s not keeping up with his peers. Because he is having what looks like dozens of absence seizures daily, on his bad days. Because we’ve upped his meds again and again and again since August.

But first, some fun detours on the trip, to see theflooding at Tuttle Creek and even spy some (mini) rock slides along Tuttle Creek Boulevard.