Wednesday, September 30, 2009

Rett Syndrome Awareness Month


I spent today on the fundraising grind. Handing out posters and delivering and hanging them at different locations all over town. Like I said earlier everyone I talked to told me to get on facebook and twitter and tell people...and ask them to tell people..and ask them and them and them.So that is what I am doing. Some Rett parents don't fund raise because they don't know how and it's stressful..believe me I know that one.. You can help by spreading the word. A few emails or posts a month.For those not in the Rett Family..Here I speak for myself. You often ask what you can do?? What do we need??We need treatment. We need a cure. We need equal rights. We need people to know and we need people to raise funds now. Rett Syndrome is by and large ignored by the general community.. Why? Because people don't know. They can't help if they don't know...Can you put up a jar in your salon,fire station,shop or store??? I can send you any info you need. Anytime!http://www.girlpower2cure.org/dancinforrett



The above is what I posted to facebook and myspace 24 hours ago. I was so excited. In 24 hours 4 other people reposted it. 4 out of hundreds. In the last 24 hours I raised $10.00. Ten dollars from another Rett mom who felt sorry for me.


When you have a little girl who is born as normal and healthy as can be and you love and enjoy every little normal thing then sometime out of nowhere and before she is two..everything just goes away. Everything she has learned. Everything you taught her. All your hopes and dreams for someday.


Four short months after Abby was diagnosed a complete reversal of symptoms was discovered by Adrian Bird. We were..and still are so hopeful..But it is up to us. Us,our friends and our families to make this happen.
You can read about Dr Birds findings at the link below

What is Rett Syndrome??

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. 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.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!


You can donate anytime in October in Abby's name by clicking here


You can donate anytime..all year long..by clicking here


Thank you

Saturday, September 26, 2009

Happy Birthday Princess Abby!!!!!

Today is Abby's 5th Birthday!!!!!!! Because she is so ill we are going to reschedule her birthday party for November...only because she is contagious and needs several weeks to get over it and October is so so busy for us because it is RETT SYNDROME AWARENESS MONTH!
I thought it would be nice to post her previous birthday pics. No not all 20 thousand of them. Just some of my favorites!The day she was born. September 26,2004
Her 1st birthday. Already kissen boys!

Her unicorn pony


My little fairy princessAttacking a banana cream pie
Her 2nd birthday. So pretty
Her 3rd birthday. This is her reaction when her class started to sing Happy BirthdayPretty girl 3rd birthday3rd birthday party! Such a lil princess

4th birthday. Not at all happy about the outfit!

4th birthday party at school. Showing off her adaptive skills!!
Feel better soon my love!!!

Thursday, September 24, 2009

Feeling a little better today

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Some of you know that our Abby has gotten the dreaded flu bug. Darn piggies.

The first few days she was pretty miserable and we had to go ahead and reschedule her birthday party from Saturday the 26th to November 7th. Only because she could still be contagious for a while and we want to give her plenty of time to recover.

I finally got some smiles and movement from her this morning and wanted to share. I know every ones been pretty worried. She has been fever free since last night so hopefully she is on her way to recovery.

Keep the good thoughts coming!

Thanks

T

Friday, September 18, 2009

Our friend Joseph

Did you know that Down Syndrome Awareness Month and Rett Syndrome awareness month are both in October?
Above is our little friend Joseph. One of the cutest kids I have ever seen and such a sweet sweet boy.
We will be taking part in the 1st annual Step Up For Down Syndrome Walk in October on the 24th in honor of our little man. The following is information about the event. We would love for you to honor Joseph by contributing or joining us for the walk.
Click here to find out more about the event.
Click here to view Mr Cutie Pie in Action.
Thank you!!!

Sunday, September 13, 2009

Abby's ways of communicating

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As most of you know my Abby has Rett Syndrome. A debilitating disorder that at 18 months robbed her of her speech, purposeful hand use and physical free will. She has low tone,severe Apraxia and Ataxia. We have been working on ways to communicate with Abby and it has been a long road. We have started to introduce her to simple switches at home and she is adjusting just like the little trooper she is.

We are using this button to record messages back and forth from home and school. She can't always (mostly never) get her hands to do what she wants them to so she is adapting. Our best success with her has been eye gaze-paying attention to what she is looking at-but that kind of equiptment is ridiculously expensive.

Here we are going over what she did at school this day. You can see for yourself how amazing my little princess is. I am so proud of her!

Tuesday, September 8, 2009

Daddy kisser

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Yesterday we went to a friends house and their were a few unfamiliar people there. Abby was all about loving on her Dad and I got a minute of video. She is such a little flirty bug!

Daddy Time

My mother in law lives in the Czech Republic. She hasn't gotten to see Abby since she was two years old and I got some great Abby and Daddy time yesterday so I thought I would post this for my husbands family. She so loves her Daddy
Aww Daddy. Give me a huggie!

Cause I own you and you better not forget it!

Friday, September 4, 2009

Abby's pool walk

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Abby finally got to go back to the pool with her Heather. Heather has been her OT since Early Intervention First Steps. 18 months old. Heather was off for maternity leave and Abby spent that time not playing nice for Heathers replacement. Here she is doing her lap around the shallow kids pool before she went in. She was giggling the whole time!