What IS going on?

>> Friday, November 22, 2013

The last two weeks have been...weird. Very. We started last week with a Status seizure and trip to Primary Childrens.

At 6:00am, Taylor knocked on my bedroom door and said: Bug is crying.

This is disheartening for one reason: He almost NEVER cries.

Bug had that broken foot...didn't cry. He had a 1 inch sliver in his finger for at LEAST a week...didn't cry. Crying for Bug is very bad.

So, I got dressed and ran upstairs where I found my little prince curled up on his bed sobbing. I held him and caressed him and begged him to tell me what was wrong...point at something. He didn't. He doesn't understand. So I just held him and weighed my options. Then he seized.

It was a bad seizure. Very bad. And once it was over, about 2 minutes later, he cried again. He did this 4 times in about 40 minutes and at 6:45 I did something I haven't done in a VERY long time: I gave him Diastat. I gave him the Diastat and, while he was still crying and we were waiting for the Diastat to kick in, I checked his 02 level.

81

For those that don't know...anything 85 and below can cause death. Yes, it takes a while at this level but still, Bug has never been that low before. Ever. Never.

Luckily, Mom and Dad were here and they were able to stay with the other 3 while I took Bug immediately to the ER. I did not go to Primary Children's because I didn't have time. I needed to get his 02 level up. And he was resistent. They blamed the Diastat. I corrected that. Nope. Not the Diastat.

And he won a trip, in an ambulance, to Primary Children's.

We were there for 10 hours. He had a chest xray which was normal, he had an EEG which was HIS normal but did develop a fever. We gave him ibuprofen, his fever broke, he woke up and we went home.

Since then, in 10 days, we have only 2 confirmed seizures. What the hell you say? Yep. 2. Confirmed. Now, he could be having more but we haven't seen them.

He has been sick. Runny nose and cough kind of sick and that COULD be why. But for that long?

Waiting for the other shoe to drop with a great, big loud thud. But until then...what is going on?

He is happy, energetic...very energetic. He is eating well, albeit grossly, and he is giggling when we tickle him. So odd. Enjoyable, but not like him. I like it. Mostly. The food messes are not so great, but the personality is awesome!

So, again, we wait. And we wonder: What is going on?

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A flurry of activity

>> Saturday, November 9, 2013

What is going on?

The last three days, Bug has been more hyper than usual. I mean, hyper like he was when he was 3. It's curious and kinda frightening.

What makes it frightening? He isn't being careful. He is banging into things and people, although he is humming a lot and watching TV, the hyperactivity is scary. He misses stairs...he jumps off the furniture.

He seems to have regressed a little but is also very happy and only seizing once maybe twice a day. His regression is based on how he eats and plays and that he no longer releases the seat belt but just wiggles out of it. :(

The self-stimming and hyperactivity is through the roof.

An example:

We went to Vegas, while we were in St. George. Why not? We ate at a Buffet. TWO hours later we left. Two hours at a buffet you say? Yes. It was an adventure.

Bug was so hungry as soon as ANY food was near him he would grab it and shove it in his mouth. Then he would pull pieces out of his mouth, smash them in his hand and eat them again. Aiden dropped his toy and it rolled onto the table, knocking over Daddy's FULL Diet Pepsi into Bug's plate. Another plate and another Diet Pepsi were retrieved.

We cleaned it up. Ava was done eating and wanted to walk around on the booth seat.

Bug then spilled Daddy's new, FULL Diet Pepsi on himself and Daddy while Ava was jumping on the seat and being scolded for it.

Aiden leaned. And grunted. And then I needed to change his diaper, remove his shirt for good and clean up the high chair. While I was changing his diaper, Bug spilled ANOTHER Diet Pepsi all over the table.

All the while, we fed him. Anything and everything we could get him to stop knocking over. He kept pushing away from the table and then trying to stand up. As he was doing that, he would reach out for ANYTHING he could grab. Including the next thing he spilled: au jus for the roast beef.

Aiden needed to be fed and off to the bathroom again.

When I got back, Ava was crying, no clue why...sometimes she just cries. Bug was chirping and grabbing and Taylor was just laughing. Daddy went back to get seconds and Bug knocked over another au jus. How does he keep doing this you might wonder? I can try to explain but really...it's something you have to experience before you can fully understand.

When he is like this...we worry. And we wait. That other shoe is getting further and further off the ground.

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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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