Getting to know you

I can’t speak for my husband, but I was completely content with my relationship with AS. We treat you with a variety of therapies, we take extra time to help you process language, we do whatever is in our power to get you the rest you need, and we give you extra specified vitamins. Sounds easy, right!… considering… But, we’d figured it out, we were managing.

This past week, we got to know AS just a little bit better… for the worse.

Noah came down with a nasty virus and a bacterial ear infection, so he experienced his first round of antibiotics. I was initially hesitant about him taking the prescription because of how it throws of the gastrointestinal system and in kids with AS, sometimes the gut is what keeps them thriving. Obviously though, my buddy was ill and needed to heal, so we started the regimen. He did great but we were told that he would get worse before he got better… Plus the side effects of an antibiotic on a little 3 year old body can wreck havoc…. ohhh my poopy. I’m telling you, the gastro system is big deal.

Noah began having what we think were drop seizures, perhaps more commonly known as atonic seizures. He would walk around and just drop, hitting his little head on the hardwood floors or falling into his bookcase. He would be sitting on the couch and his head would just flop back or fall forwards. Atonic literally means “lacking muscle tone”, which clearly explains what was happening, he was losing all muscle tone in his little body. Matt likened it to students in his 8am class nodding off. Children with AS are 70-80% more likely than the regular population to suffer from epilepsy, so we weren’t shocked, but we both felt like we were in the clear since most children’s seizures start before the age of 3.

The positive hope we found in these little “drops” were that once he hit the ground or his head flopped backwards, he snapped out of it immediately. There wasn’t any convulsing, flapping of arms, or the horror stories you hear about seizures…. Regardless, it was scary, and I wasn’t about to just watch my little boy fall and then cry in confusion because he didn’t understand what just happened. We got into his Neurologist at the Children’s Hospital early Monday and got an EEG scheduled for Wednesday.

Thankfully, since Monday, we haven’t seen any drops or abnormal behaviors… Although, what 3 year old doesn’t have abnormal behaviors :)

Here, Noey just had 27 electrodes glued to his little head, wrapped in gauze and suited with a little carry case to keep the reading box all portable. What a smile, what a pillar of strength in my life. 
Winding down for the evening with the most wonderful father. What a grin, right? 
Currently, Noah is lounging on the couch, waiting for 1:30pm when we get to go and have all the electrodes removed. Waiting for his promised ice cream is really what he’s thinking about :)
We are hoping for good results from the EEG. We have the top notch AS/Epilepsy Neurologist at Golisano Children’s Hospital at our fingertips, thank you Jesus! Please keep little Noey in your prayers. 
ps- I have TONS of pictures and stories from our trip to KS a week ago, but will update when my brain can separate itself from the current state of affairs.

One thought on “Getting to know you

  1. “That smile is a pillar of strength” is a total understatement! His smile is contagious and beautiful. Noah you are always in our nightly prayers, but lately there have been a few more said for you buddy as well as other friends of our family that are praying for you and your mom and dad who love you so much. Love you Noah bean!! Love Auntie C


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