Saturday, March 13, 2010

Still No Seizures

Still no seizures, I think we all are going to go nuts. It is crazy to think that only weeks ago X was having about 10-15 seizures a day with medicine, and now on only one medicine (with a low dosage) he has not had one. I am not sure whether to be grateful or pissed off. I know what some of you may be saying, “You should be grateful, maybe he is done having seizures”, I WANT to believe that, but I am having a hard time swallowing that pill. This would be one of those cases where it’s easier said than done, and it is easier to say on the outside looking in than living through it. We have already gone through the heartbreaking rollercoaster that has surprised us more than once; I think both Sarah and I are so leery to think anything is possible.

I just want this over with now, seriously, now. Someone asked me why, I’ll give you a few reasons. 1) By the time X starts school he should be close to 100%, which is HUGE. Kids in Kindergarten live off of competition, especially boys, if this drags on then X is looking at not being anywhere near 100%, meaning racing, chasing, throwing balls and all the rest of those things will be affected. Not to mention his mental state, the surgery affects his quick thinking and spatial thinking, making school harder. 2) I do not want him having to deal with this crap any longer, it drains him. I want my carefree boy back, and this crap worries him. 3) Our family needs to fall back into a routine; the Twinkies need to see Mom, Dad and Xander for more than 30 minutes a day. I need to see them for more than 30 minutes a day, I need to wrestle with all my boys; it keeps me on my toes. 4) X is going stir crazy, cause us to go CRAZY.

We had a small surprise party for Wren, my niece, she turns 7 tomorrow. I ordered a cake for her after I asked her what she wanted; I take that back our friends the Eckersons (Travis & Stacey) ordered it for me (THANKS!). Stacey told me the only place that would do it was Hy-Vee; it was a strawberry cake with Strawberry frosting. She loved it, or she acted like she did, she said “Uncle Dan, you got me my strawberry cake with strawberry icing”, we all sang Happy Birthday and ate cake and ice cream in X’s room. After it was all over I was a bit saddened as I watched X, he had this sad look in his eye as his Mom, brothers, Auntie Deven and Cousin Wren all left. He looked back up at me and then smiled; it was almost as if he was trying to be extra brave for me. I gave him a big kiss on his face and then just chilled with him until Sarah came back.

I wish you all could see how brave X is, to read about it is one thing, to watch a 5 year old boy going through this craziness, and remain innocent and positive is inspirational to say the least. I find myself striving to be a better person/dad as I watch him; some of the nurses and Doctors have commented on how great I am with him; the truth of the matter is he draws that out in me. Anyway, I just wish you all could see his strength, it is amazing.

Tomorrow we are going to ask them what the plan of attack is if he does not have any seizures, I am a bit uneasy when I think about that. I am off to bed, his facebook account has the newest pictures if you want to see them, we are still having issues with our camera. One last thing, Digilio's, Thanks for the gift, X wsas all smiles and giggles when he opened it up. He sleeps with her next to him in bed and turns beet red when I tell the nurses that she is his crush. Keep praying for X, and still no news on Eddie.

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