Tuesday, July 17, 2018

Clara's 24 Hour VEEG Results!

I posted here that we had some concerns, after an initial EEG in April, that Clara was having a-typical seizures.

Due to the abnormal results, the neurologist highly suggested a 24 hour video EEG to get a better idea of what was going on, how often these seizures were occurring, etc. This test was done in June and honestly, went much better than we anticipated.

Clara was a champ and other than a full-blow tantrum at bedtime and not crashing out until midnight (can't say I blame her, I wouldn't want to sleep with a video camera in my room and 30 stickers glued to my head!), she did very, very well.

A few pictures from said 24 hours . . .


All the wires and main box were contained inside her little cross body purse. Genius move, Dr. R. She only tried to take it off 2-3x and didn't fuss when we put it back on. 

Headed home . . . 



Being monitored for hours on end is exhausting . . . 

Not going to lie, it felt like I was on Big Brother. She was napping on me and the video camera was pointing right at our faces and it made me all awkward, like I didn't know where to look or what faces to make. Ha! 



After crashing at midnight, she slept solid until 5:00am. She woke crying and confused and Brandon (who was on her floor) immediately jumped into bed with her to calm her and get her back to sleep. Worked and we were thankful! 

Slept like an angel until 9:00am

We received the results yesterday, and I am so eager to share that Clara's results came back completely clear. As in, the Dr. didn't see one bit of seizure activity. He said the results are normal for what he would expect for someone with typical brain development, not just normal for someone with neurological differences like Clara. This is so encouraging on many levels! He is 90% sure she is not having seizures at all and stated sometimes the initial test is a fluke for some reason.

Said fluke stressed me out hard core for the last few weeks, but it's all good. :)

This feels like a major win in what has been a season of continual battles (with the state regarding services, insurance regarding treatment, etc). Thank you, God.

We are celebrating!



Tuesday, July 3, 2018

Camille's ballet debut

Camille has been begging to take ballet since she was 2.5 years old. I've asked if she would like to try soccer and a variety of other activities and she always replies with "No thank you, Mommy. I really just want to take ballet." 

I've held her off as long as possible (because well, I'm not really sure?), and agreed to put her in a one week ballet camp this summer to test the waters before signing her up for an ongoing class. 

Verdict? 

She was on cloud nine every day and came home with the biggest smile. Absolutely loving life and so, so happy. 

Also? Mama needs to get a grip. I cried every. single. day. watching her and I still tear up every time I watch her final "performance. " Ballet apparently brings out every emotion I have buried about my littlest girl growing up. The song she danced to came on Pandora while we were coloring the other day and again, waterworks. What in the actual world? 


I think fall ballet lessons are in her future! And possibly more therapy for me. :)
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