Differences

>> Thursday, December 9, 2010

I have been lax about posting on Bug's blog lately. He was doing well and then we wasn't, he had no seizures and then he had 3 in one day including a drop that immediately made me think he was back in Status. And then he had the night before last. It was ickie.

He came home from school and I pulled out that dreaded yellow paper. It's an incident paper. His Teacher had called to tell me had a seizure before getting on the bus. Bummer. His bus ride was uneventful and then an hour or so after he came home he had a another. Damn I thought. That night, he had some intestinal wonderment that woke him up three times in an hour and half. I changed his diapers and he went right back to sleep and then proceeded to have two more seizures. It occurred to me that he didn't seize more when he was constipated, which is common with a lot of seizure kids, but he seized more when he had diarrhea...maybe he has a bad allergy to something. We are determined to do a modified Atkins for Bug. Not a Keto...but carb light, fat heavy, protein laden.

What prompted me to write was something that happened before this ickness.

Papa, they think, had a Transient Global Amnesia event. I think he may have had a variation of that or a seizure but it was NOT a textbook case. They don't believe us. But before Papa 'got sleepy' we had been enjoying our breakfast at IHOP. Our waiter was fabulous and funny. Two things that guaranteed a big tip, and as it turned out has had Epilepsy since he was a young lad. 11 I think he said.

We made small talk about Epilepsy and about how Bug is doing, he told us about how he lives his life like everyone else and stopped taking him meds because they effect him more than the seizures do. I respect that. He doesn't drive, because that would be selfish and irresponsible and he ended with this:

Make sure to give him plenty of love and support when the other children make fun of him, and they will. I went through hell and I just want you to be prepared.

Bless him. Bless him a lot. I wanted to hug him, and I might have but Papa was asleep. For no reason. And Nana had difficulty waking him up. He answered my questions, but inappropriately and then tried to go back to sleep. I gathered everyone up and said: We are going to the Hospital. My first thought was: Stroke.

I live with death everyday. I do not accept it but I tolerate it. Bug has a higher than average chance of SUDEP, so I learn to keep my eyes and ears open for any change that can signal something big. I am used to it...with Bug. Not with Dad.

People are all different. Different is not bad, it just is...well...different. I saw this in spades this last weekend. Bug is different in a lot of ways and people accept that because he is easy to love. Dad was being treated as if he WAS NOT different. They wanted to lump him into a category immediately. I had to repeat what had happened no less than 4 times because THEY kept changing it. I won and Dad got what he needed, but I shouldn't have had to reiterate so many times. They should look at the symptoms, of course, but they HAVE to add in the differences of the person. THAT is what is wrong with medical professionals.

They see only what is constant and ignore it if it is out of type, they do not see the person.

Different is not good, or bad, and it's those differences that make us wonderful and varied and able to accomplish great things. Our differences keep us finding and reaching for more and farther than before. If we embrace it.

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December 3rd, 2010

>> Friday, December 3, 2010

Wow, a long time.

Bug has been doing well. He has had a few events and ALL when he was asleep. Yesterday was the worst...he had two seizures while he napped. But when he woke, he was energetic and happy and when he went to bed, he didn't have any. In fact, in the last 10 days, his seizures have only been during daytime naps. He has been ill too. Poor kiddo. I hate when he is sick, he is just silently miserable and it breaks my heart. He is doing better today and so went to school.

Yesterday, I got a call from his teacher. Katherine was checking on him and then passed the phone to Susan. Susan told me that Bug has been chosen to participate in the Shop With a Cop program. He gets to have breakfast with a police officer and then has 100 bucks to spend on gifts for people. After he picks the gifts and they are paid for, they will help him wrap them. Now, I know he will not be too interested in this, he just doesn't understand the magnitude. But, I will go with him and we will have fun. His police officer will NOT know what to do. The kid is adorable and doesn't say a word, he is lovable and doesn't really care about people. It will be a new adventure for all of us and I am as excited as I can be. Lot's a picture will be taken...and hopefully some of them will look good. :)

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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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