If you give a mouse a cookie..... You get a money pit.

Four years ago Bobby and I were blessed with an accomplishment not many couples achieve in their 20s. We became 1st time homeowners. We were over the moon. We were a small family with a 2 and 3 year old boys and it was a small 3 bedroom 1 bath house so it worked. The little old man aptly named Mr. Shorty was the nicest man to sell us this house, even lowering the price so we could afford the payments. I cried. It was wonderful.

Then life kicked us where the sun don't shine and I'm not talking butts. The house is block with s crawl space. There was four feet of mud under the two feet of standing water under the house. After Bobby got the water out and mud dried up, the floors started being bouncy. Soon after walls started cracking, and the black mold showed up in bathroom and our bedroom. We suspended the TV from the rafters in the attic, we painted over or hung paintings over the cracks and sprayed bleach on the mold. We told ourselves that when we had the money and time we would get around to it and fix the things that needed to be mended. Then came the diagnosis and with it the knowledge that this wasn't working. See here's the deal, Chloe has a gait trainer now to help her get around. But the house isn't open so she's limited to our small living room. But there's carpet so she can't roll. Then there is the space issue, there is no closet in Chloe's room, the boys closet is literally 3inches deep (no one believes me until they measure), there is only one bathroom, eventually Chloe will need a wheel chair, and other aides. I just want something that will fit our needs, both now and in the future. Now here's the kicker, Chloe is already having seizures, we know that they are brought on my several things but one of them is stress. Wanna guess what a house renovation is. Plus studies show that stress can make the regression worse. And with our house if you tear up the floors in one room you have to do the other rooms, if you fiz the walls in one room you have to get the others fix, then you don't want that work to get ruined my the holes in the roof.... Well if you give a mouse a cookie.....
So what's the plan? Glad you asked, I have no freaking clue. But this is the plan so far, we are having fund raiders to get the materials to fix the house. Once we have that money acquired then my plan is to look into either A. Seeing if we cam get a loan to buy another house and after we fix up this house rent it out. Or B. Move into a rental until we can fix and sell our house then buy another. Which ever way, this is why we are going to be having a booth at the Garden City Fall Festival. You can get bumper stickers, window clings, fudge, cakes, bracelets, your face painted, and your nails done and a clip in purple hair extention. You'll learn more about Retts, our house, and Chloe. I refuse to give up and go quietly into that good night. I'll beg, borrow and guilt, until Chloe has a home she can get around in.

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.