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.

Yesterday was a good day

So Bobby wanted me to write this because apparently I've been all gloom and doomy. So....
Yesterday was GREAT!!! No sarcasm or anything. Chloe was more alert and more vocal than has been in a long time. She was so happy and content. She took a nap and afterwards she was a little groggy but she bounced back and pretty soon she was playing and laughing. I was tiding up and I heard this noise of the fluttering paper, and then a thump. I came into the living room and I see this little girl surrounded by all this mess. For a few milliseconds I was upset at the mess in the newly cleaned room,then I was taken back by the thought that one day, perhaps one day soon, she won't be able to make a mess. My heart was heavy but I tried to smile and really enjoy the moment. I waited till she moved on to make a mess with the socks before I cleaned it up and when I did it wasn't with the expelled air of maryterdoom that I usually have. I cleaned it up with a lightness of heart I hadn't felt in a long long time.

But the good times didn't stop there. Bobby got home and we got out the door in one not so fluid motion. She didn't sleep in the van on the way to therapy like she normally does, instead she laughed and clapped all the way there. Then in speech she was engaged, she was alert, she was making sounds that I had never heard before, she was imitating her therapist, I couldn't even taken it in, I was so enthralled. Our wonderful speech therapist wanted to try something new so she had me get the iPad and we used a customizable app and had Chloe touch a button with a picture of her cheerios on it. She would touch the picture and would give her a cheerio. It was great! To think that she was understanding it, and doing what we asked her... It was so exciting. Her therapy session is supposed to be only 30 mins long but because we're the last clients of the day she went over and it was almost an hour of wonderfulness! That night I didn't want her to go to sleep. I was scared that like Cinderella my ball and dress and coach would dissolve and I would go back to the reality I had before. I scoured my brain to see what I had done differently the night or something. I came up empty but this morning she was great! So yesterday was a great day! I want so badly to believe that she will only get better from her. I know it's not realistic but a girl can dream right??

This is the first post I wrote after we found out....

A mother knows. A mother knows there is something wrong when she looks in the eyes of her newborn. She knows when her precious baby doesn't hit milestones or reach for her in the the "clingy" stage. A mother knows when her gut and instincts all scream "SOMETHING ISN"T RIGHT" And a mother knows when she would give all that she has to be wrong.




Today I got the call that ended the searching phase we have been in since roughly November 2010. I thought I had it all figured out. I thought that I had solved the puzzle. I didn't want to be right. I wasn't. I suppose I should have felt relieved. Some people start the searching phase and end up being in it for years. I didn't.

Rett Syndrome. two words that changed our lives forever. I had heard of it, once or twice I have scanned the symptoms only to quickly dismiss it. The outcome isn't good. But the blood test came back and it's Rett Syndrome. I honestly don't know much about it. I know more about it now than I did 24 hours ago though. Here's what I know, but seriously if you want to know more then I strongly urge you to go to http://www.nichd.nih.gov/ and look up Rett Syndrome.

It's rare: only 1 in every 10,000 to 25,000 live births result in a Rett Syndrome birth
It only affects girls with I think 2 exceptions ever. the reason is long and technical and has to do with X and Y chromosomes.
Unlike Angelman Syndrome which affects the chromosomes, Rett affects a single gene.
Rett Syndrome isn't degenerative but it is regressive. (I'm still fuzzy on the difference)
Rett Syndrome will eventually take my baby's ability to walk and crawl away.
She may learn to talk eventually but even that will be taken from her.
There are 4 phases of progression with Rett Syndrome
Early Onset Phase- she will stop developing
Rapid Destructive Phase-she will lose or regress learned skills quickly,* this phase is the hardest to swallow. It breaks my heart over and over* Purposeful hand movement and speech are the first to be lost......
Plateau Phase- regression slows. Seizures and movement problems are common in this stage. and most girls spend the majority of their time here
Late Motor Deterioration Phase- girls with either become stiff or lose muscle tome and some become immobile.


The reality of this is washing over me in waves of grief. Our life will never be the same. We are thinking about the future and trying not to be scared but we know that we need a house that is more open and handicap accessible. We will need a van that is modified to help us. And we need a communication device so we can communicate with Chloe. the list could go on and on. For now I will just have to take sleep. I will write again sooner than last time.