Results and other news

Friday wasn't a great day, we got a call from the neurologist's office that Chloe's EEG was abnormal and that her brain is seizing. We have an appointment tomorrow morning at 10:15 to see talk to Dr. Pearlman. Bobby will be with us, praise the Lord. I have a few fears: one, the meds that are for seizures are no joke, with heavy citywide effects. I dont know if I'm comfortable with that. Two, I know that some of the meds could disqualify her from the Clinical Trial in Boston. I do not want to do ANY thing that would jeopardize that. Third, if we make the wrong decision she could die from a seizure, I have already lost my cousin from a sieizure so I'm acutely aware of the dangers. Fourth, the seizure activity in her brain means either that we have moved into the regression stage or we are about to move into the regression stage. That scares the ever livin crap out of me.

Which brings me to my next heart stopping fear, our house. We have a very nice man who's is a total stranger coming over to look at our house on Thursday. They are going to see if he and the church that is across the street can repair it enough so we can sell it. I'm totally excited and totally terrified at the same time. I'm excited because we need this sooooo badly,it will be a blessing to see Chloe in a house she can move around in, one where we know come what may, we can have her in our house her whole life with whatever medical equipment she may meed. I am terrified because this means that the house getting fixed to sell with be totally chaotic and stressful for her, a move, or several moves would be stressful on her and as I read I read over and over that stress isn't good for Rett girls, especially during her regression. We've already been told to expect catostrophic results when she regresses because she doesnt talk or walk on her own, she can't use a fork or help in dressing herself. I feel like every decision is life or death for her. I don't know.
I do know that the boys are acting out because of the time and energy we are spending with Chloe, no matter how hard I try to give them one on one attention its just not enough. My marriage has shifted into this odd dynamic that is totally unexpected. We have been together with the exception of a two year break, since I was 15. He's my best friend and knows me better than I know myself. But on August 30th life changed and I guess we did too. I'm engrossed in this new Rett world, trying to navigate our new life, with our new daughter. There's no one in our city that has a daughter with Retts,so it's Kinda hard to find someone who really relates. Meanwhile he says he feels neglected. I get that I do but keepers creepers, between the boys,housework, Chloe, filling out paperwork for medicaid and to get financial help for our house, and doing research on her seizures, laundry, etc.... Whew! Not to mention he wants to talk about the lasted blog or sermon or whatnot and that's great, but it's just not where I'm at right now. He's a wonderful husband, don't get me wrong. He is the best in the world. Just lately it's been more of a ships passing in the night kinda feel than a marriage. Hopefully this Friday will help that. We have a hot date! Lord willing and the creek don't rise I can get him to not crige every time he has to pay for something, he'll leave his cell at home and we'll have a wonderful time talking about totally dumb stuff, like what our favorite breed of cat is or something. You know, nothing that really requires a lot of thinking just convo that is light, engaging and nonimportant. It may seem like an odd wish but it's the mental time off that I really want. This whole thing has made me feel like I'm in that movie Crank and my whole life is spent on one adrenaline fueled crisis after another. Uneventful Dinner and a movie would be amazing. Then maybe he wouldnt feel neglected, I won't feel so alone, and the boys will see a mom and dad who are in it together not together in it.
So hopefully I'll have another update tomorrow. Prayers as always are greatly appreciated.