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I have not publicly shared this bc I wanted to get answers with out opinions first.
However, I feel like my community is such a wide variety of people and it includes some amazing special needs families that I would like to open up and ask some questions.
In January, Landon cried during the flu. We have not seen him cry since 2014. Didn’t think much about it, maybe he is getting more emotional, aging, etc.
He did it again in March. The spells started getting closer and closer and a pattern was established that it was during a shower. His Dr ruled it “shower induced seizures”.
We upped his meds and his last one was May 8.
Thinking all was well, we were surprised to find last week he had 2 convulsing seizures in a week. We upped his meds two more times.
Yesterday he had another shower crying spell for an hour. After essentially 2.5 months with out one.
I reached out to a couple of my friends who are epileptic. And his Dr told us today that each case Is different. But apparently this is super rare and his seem to be inconsistent and as she called it “untriggered”.
I’m so confused about this. We only get 30 min at a time with the Dr and i have so many questions.
Has anyone experienced this? The shower seizures, the crying, the unrelated seizures?
Does anyone have anything to offer me?
I will say, he is on a super low dose which we will be upping. They gave him a whole new protocol. So I’m not asking for any medicine related advice.
Just triggers, to see if I can find something I’m not thinking about or missing.
And even if you have nothing to offer, please pray for him. Landon has been super healthy. We are doing everything we can to manage, understand and treat.
And say a little prayer for my husband. It never gets easier to watch your child go through things out of our control.
Did yall forget I have micro donkeys? It’s been a minute since I posted farm content. But let me tell you, I didn’t forget.
These three munchkins are the highlight of every single day. I love my donkeys so much. If all I ever had was donkeys that would be fine by me. Except my pigs. I love love love my pigs. But not more than my donkeys.
Donkeys have to be the most affectionate, sweet, gentle protectors.
I might die the donkey lady. Where I have an obscene amount. Maybe even in my house. 🤎🤣🤎
Check out these cookies from @thehallcookieco made by my amazingly talented daughter @teaghenhall
Thank you @themaryellenmalone and Elena for your orders and support! The themes are adorable!
If you have an event coming up, check out her website and get on her books! Bc trust me, they taste as good as they look and I’m a sugar cookie snob. I have ordered thousands of cookies over my years and most of them I never ate! 💙
And we still made it to our nieces bday party! What a weekend!
I truly try to show up for my family. Especially the kids. I want everyone to feel loved, seen, and cared for.
Happy bday Bryn!
Now don’t call or write bc I’m putting my phone on DND for the next 12 hours and sitting in silence. Over stimulated isn’t just a word. 🤣
It’s gonna be a cereal and movie night. 🎥
