Monday, April 26, 2010

Horseys

video

Abby started Hippotherapy or Horseback therapy 3 weeks ago. We got just a bit of video as she came around the arena. They are still working on keeping her upright on the horse because of her almost nonexistent core. She is IN LOVE with the boy on the right. She is such a flirt! The loud background noise is the downpour of rain on the aluminum barn roof.

Wednesday, April 21, 2010

Thank you Ashlynn

A lovely young woman who is the best friend of a girl with Rett Syndrome put together this video of some of our girls. Abby is the second girl shown. The song about did me in.
Many of you..and I was once one of you..know nothing about Rett Syndrome and have heard very little or nothing at all about it. Here are some facts before you view the video:

Rett Syndrome

QUICK FACTS:

Debilitating neurological disorder that predominantly affects females.

The most severe form of autism.

The leading cause of severe impairment in girls - most cannot speak,
walk or use their hands.

As prevalent as Cystic Fibrosis, ALS and Huntington's.

Another little girl is born with Rett Syndrome every 90 minutes.


There are just a handful of disorders that only affect females.
Breast cancer is the most prevalent. Rett Syndrome is just as
devastating, and affects a potential one in 5,000 girls.

Condemned to an entire lifetime of struggles, these girls have
been robbed of their ability to speak, walk, crawl, use their
hands. They depend on others for every part of their day.
Complications include seizures, sudden death in their sleep and
scoliosis.

Today, there is no cure. But Rett Syndrome is CURABLE!
Amidst the mass confusion going on within their central nervous
systems, they are smart, strong, and waiting patiently for us to
unlock the door to their recovery.

Researchers at Stanford, Albert Einstein, Emory, Case
Western, Harvard, and dozens of other top-notch institutions
are sinking their teeth into Rett Syndrome.

SCIENTISTS PROVE RETT SYNDROME IS REVERSABLE

Why?

Not only will their work help thousands of girls and women
worldwide, but their findings have a direct impact on research
on Autism, schizophrenia, bipolar disorder, Alzheimer's and
many other disorders.

In essence, our girls may hold the key to a cure for millions of
people suffering from dozens of problems.

Their cure is a HUGE cure!

Thank you for visiting this site and supporting this cause.
Together our girls will move mountains!
See article


Tuesday, April 20, 2010

Secret Millionaire

A friend posted a video today from a show in the UK called Secret Millionaire. From what I can tell each week a multimillionaire goes to a town,family or facility and poses as someone else to see if he can help. Then he surprises the people at the end.
I don't know which week this was from but a man named Kevin Green visits a Rett Syndrome family at a hospice facility and is very much moved by their story. I thought it was lovely and just wanted to share.

Friday, April 9, 2010

Abbys 1st day of Hippotherapy

video

Thursday was Abby's 1st day of Hippo therapy. We got video before and after this one too but I love how happy she looks here. She is so brave and so trusting. I've been on a horse twice in my life. Once when I was her age to get my picture taken(I screamed my head off) and once again when I was in my late twenties. I thought I was going to throw up it made me so nervous.

Hippo therapy helps with balance,muscle and core strength, gait, posture, sensory processing and much more. We were told about it when Abby was first diagnosed but we wanted her to get through regression..and I needed to get over my fear and Momma Bear protective instincts. I'm so glad I did cause she had a ball. Wherever I took her today I would tell her to tell the person I was talking to about riding the horse and she did...in her own little language. She was so vocal and all smiles!! I love it.

Wednesday, April 7, 2010

A head full of lost dreams


















Today was not the easiest day in the world for me. Soon after I sent Abby off to school for the first time in 5 days I came across some things that made me sick to my stomach. Makes me question life and God and why.

I was cleaning up..just a little straightening and dusting when I saw them. The 2 VHS videos of the first 2 years of Abby's life. I'm pretty sure the room started spinning for a minute. I don't know who brought them out or who left them on the tv but they made me sick to my stomach and made my heart ache. They usually sit on a shelf in a closet. Next to the Hi 8 tapes I never transferred over. I watched the tapes once about a year an a half after Abby's diagnosis. I don't know if I'll ever be able to watch them again.

How can I watch her crawl and repeat words at 5 months old when she can't do it at 5 years old? How can I watch her at 9 months old tackle her teenage brother to the floor,lift up his shirt and blow raspberries on his belly and look at us and laugh?

I know there are scenes where she clears off the bottom shelf of her changing table then piles all her stuffed babies on top of her then pokes her head out playing peek a boo. Or the time she chased an ice cube all around the room and then tore up newspaper ads for an hour. This from the child with the blank stare. The little girl who can no longer crawl much less pick up or hold a toy...or anything for that matter. She holds her mangled constant twisting fingers to her face all day..every day..until she sleeps.

The one scene that puts me into complete psychosis..she's wearing a red onsie with a flower in it. She has one of my plastic white cooking spoons and her purple bowl. She is stiing in the middle of her toys..stir..stir ..stir..,"soup mama" she looks up at me and says. Then she crawls to each of her babies and stirs then pretends to feed them. If I knew then that this was all going to end

4 months after my daughter was stolen from me in the night by the monster we call Rett Syndrome a complete reversal of symptoms was found in laboratory tests. Through medicinal and gene therapy there was a possibility we could get our girl back....or at least hear her voice..watch her play with a toy..so much hope..so many possibilities.

That was 3 years ago last month. 3 years ago that they announced a possible cure. A cure that could lead to treatments for Rett Syndrome,Angelmans,Alzheimers,Parkinsons..

That put the Rett Community into action..on a war path for us parents. Let's get it done and get it done now!!

Not much has been done since. Oh I'm sure the powers that be are working their hind ends off. What we hear time and time again is that there is no funding or not enough funding or there needs to be more. I hear so many stories about so many families putting their hearts and souls into events to end up raising just a few dollars...From our end it seems like no one cares but us. I feel like I'm locked in this box..screaming my head off for my daughters life and for my heart and people just walk by and shrug and say..,"That's too bad."

I sit awake at night or when I'm home alone and wonder so many things. I get so frustrated I feel like there is no pill or any amount of therapy that is going to keep me from losing my mind. I cannot fathom why people don't care and don't give to research. I'm not standing on a corner with my hand out. I'm trying to save my child with everything I have....
Then I remember...Years ago..long before Abby was even thought of..Julia Roberts was all over the place blah blah blahing about some disease that kills little girls. She was on a mission to save a little girl and other girls like her. I remember not caring enough to ever even take a minute to hear what she was saying or why she was testifying before Congress...
That blah blah blahing was Rett Syndrome...the little girls name was Abigail and she died shortly afterwards. That kills me. It really does. I used to be one of the people who didn't care and didn't listen. Thinking of it now gives me chills from guilt.
When I think of the things people do support. That they do throw money out for without any knowledge...
A few years ago there was a couple who got their picture in the paper...They were holding up 5 little onsies and talking about their quints..People in this town sent them over a quarter of a million dollars. Seriously. Not only was none of that money tax deductible...THERE WERE NO BABIES!
So this is where my mind goes when I'm losing it. I often wonder if scientists discovered something that would fix hearts or diabetes or cancer if it would be held up and not funded while people died? If it would be left up to the families to fund almost entirely? Is it because Rett Syndrome is rare? ...A little girl is born with it every 5 hours. Is it because Rett Syndrome is on the Autism Spectrum and the people in charge still think that anything to do with Autism a behavioral disorder?
So I push on, doing the only thing I can do. Loving my girl every minute I have her and doing the Dress up 2 Cure Campaign in April for Autism Awareness Month. I worked my butt off last year just to get told no over and over. I worked for months and raised about $300.00 . October is our own awareness month...that we share with Down Syndrome and Breast Cancer. I send out emails and make phone calls and join campaigns.. for about 5 cents an hour. What I raise usually comes out of my pocket because I don't want the embarrassment of showing up empty handed. Those who do donate usually don't know us but saw a video of Abby online or is someone from high school. Every day in between I educate and inform and council those who need it.
Hope,Dream,Believe...

Tomorrow will be better

Thursday, April 1, 2010

Daddy lovin Mommy teasin BRAT!

video

Hey guys. This is Abby. I thought I would get on here since my Mom has been so lazy about keeping my blog up.

My Mom took this video the other night of me. Her and my Dad were trying to get me to eat food. They know I dont eat food unless I am watching another kid right next to me do it.

So I decided to hide from her. She can't see me if I'm not looking at her. She thinks she can but I know better cause I cant see her cause I'm hiding.

My Daddy is pretty good at saving me from her when she's trying to get me to give me kisses or to make me eat stuff.

Make sure you watch the video till the end. She called me a brat so I called her one right back!