ER and a lost 24 hours

>> Monday, January 14, 2013

Yesterday was a bad seizure day. Not that he had a lot of seizures, considering the weather 5 is not unusual. BUT, he started it off hitting his nose JUST RIGHT and giving himself a bloody nose. Bummer. Didn't stop him though, still pretty active and by 3pm he had only had 1 seizure so I commented (out loud, like and idiot): Hey, by this time yesterday he had 4 seizures, so let's hope he's turned the corner.

Promptly ten minutes later; seizure number 2.

Followed throughout the evening with 3 more, it was the last one that threw us for a loop. He went Tonic, locked his hands over his head and fell over. He slid down the chair and gently landed on the floor. Didn't seem bad, except....

He loves to take his one big tooth and bite his lip off and on. He was in the middle of this biting when he seized. So, he locked up, his jaw clenched and he bit through his lip. From the outside in, again. This time, it was worse. I looked at the size of the cut and knew it would probably require a stitch or two. Off to the ER we went.

Bug and I were in and out in 90 minutes with 1 stitch. He was a champ. Daddy stayed home because it was getting late and the girls needed to be fed and put in bed.

By the time we got home, he was smiling and happy. Good sign. So we let him stay up to almost 11 (we got home at 9:35) and he went blissfully to bed. For 13 hours.

Today, he has been awake for MAYBE 4 hours all day. WTH? Mostly, I was concerned at first. But, maybe he is just healing and his body is shutting down to let that happen. He ate a big lunch so I am not concerned about that, and he drank two huge bottles of water, also not a concern. Just the sleeping.

I am so used to him sleeping normally, that this throws me into checking him every hour or less. His O2 is good: 97. His heart rate says: I am REALLY asleep at 77bpm. He is just sleeping well. With only two seizures that I know about.

After a long day of wondering I realized that 5 years ago, this would have meant ONE thing: seizure type change. So, maybe it does again. MAYBE we will see a change in seizures and MAYBE it could be good.

Or...he will wake up in the middle of the night (or now) with a fever. Hmmm...

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Tomorrow

>> Thursday, January 10, 2013

I was telling Tay that I may or may not make it to her production in school tomorrow. I explained that this appointment Bug has is a big one. It's with an Immunologist.

I asked if she remembers how Bug doesn't seize when he has a fever. Well, I explained, that's because his immune system is fighting the invader it is ignoring the landlord.

Once she understood the finer details (about immunosuppressants) she said:

And this could cure Bug?

I was taken aback, really. Because the answer is yes. Yes it could. He would have to follow the regime for a long time, maybe forever, but it could, REALLY cure him.

I have never thought about this FRa, and CFD and ASD and all of the other TLA's (Three letter acronyms - thank you Glenn - that's still one of my favorites) being actually CUREABLE. Just treatable. And, in a way, constant treatment isn't really a cure, is it? But if it helps him, if it allows him to communicate better, if it allows him to see the world from a standing position instead of on the ground, then, hell, that's a cure for me.

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A little bit of normal

>> Wednesday, January 2, 2013

And a lot of Bug. :)

He was fun and happy and very vocal today. With one big -ish seizure and two iffies. Pretty cool compared to yesterday.

Yesterday he totaled 6 seizures and 3 poop filled diapers. AH HA! So, that's why the 6. Yep, intestinal irregularities kick off seizures in Bug.

Today, was a lot more normal. He even watched a fair amount of TV, when we had it on, and would STOP spinning to watch. This is a bit of a big deal really. Usually, the play continues but it was, as if, he was actually paying attention. Cool, huh?

He took a late bath and is just glowing. This child is truly beautiful, inside and out. But he is still snotty and probably can't go to school tomorrow. Although one never knows, it's probably another day at home for the Bugster. I'm not complaining. He's warm, he likes to cuddle and he is almost saying Mama daily. I'll take it. Boy, will I take it.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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