Sigh…

This sweet girls EEG didn’t go as we hoped. The steroid regime didn’t work and her brain is still constantly misfiring when she’s sleeping. Now we wean off prednisone and neuro consults and tries to throw something else at her and pray it sticks. Meantime, monitor on any time she’s sleeping and rescue meds/oxygen in […]

Read More Sigh…

Overdue Lennyn Update

Hi Friends! Haven’t done much of an update lately so this is very overdue! Lennyn went 13 months seizure free! We did so much traveling the last year, had so many adventures, and spent so much time with the people we love the most. Lennyn even started pre-k part time in September! We had dodged […]

Read More Overdue Lennyn Update

New diagnosis

Lennyn was officially diagnosed with Autism today. ASD associated with a known medical condition, to be precise. It’s been a long road (and a long wait for a good developmental ped) but we’re finally opening some doors and cutting some red tape to therapies she desperately needs. Hopefully this is the final diagnosis for the […]

Read More New diagnosis

Neurology update

I haven’t posted a neuro update in a while because I don’t want to jinx the streak we’ve been on. In the epilepsy world, when it’s going good, you don’t talk about it. The Bug went for a follow up EEG today, to get a new baseline a few months into new meds. I figured […]

Read More Neurology update

Caitie’s Classroom

Lennyn’s original wish was to meet Caitie and Tobee from Caitie’s Classroom but because of Covid and her health we had to come up with a more realistic wish. Caitie and Tobee still wanted to make sure Lennyn knew how loved she was! How special! 😭 Thank you so much friends ♥️ #LennynStrong

Read More Caitie’s Classroom

Make-a-wish

Absolutely blown away with the generosity of Make-A-Wish. Lennyn wanted to go camping, and now she’ll be camping in style, wherever, whenever. 😭♥️ #LennynStrong

Read More Make-a-wish

✨

This girl has a super special day ahead of her! #LennynStrong

Read More ✨