Temporarily Closed

Please feel free to learn,educate and advocate from previous posts. We will be closed for the foreseeable future. We have many links and posts for your enjoyment,

God Bless

Finally Research In language I can understand.

Don't get me wrong. I'm no dummy....OK for the most part I'm not but do sometimes get tongue tied or freeze when telling people about Research and HOPE for Rett Syndrome.

Rett Syndrome is complicated and confusing. Even well versed parent like myself often don't get why one specialist says this and another says that... IE Neurodevelopmental and Neurodegenerative. I know it means stops growing and the other means deteriorates and dies so I  know which one I choose to believe. Abby's skills come and go and its just too bad there isn't a Neurouseitorloseit term. <
So, this weekend in my Facebook Newsfeed.... Yah I know I hate Facebook and am trying to get away from it but its where all my instantinfo Rett parents are...there was this AMAZING blog post in my news feed. It was from a Mom who's blog I have read over and over again but we are not Facebook friends or acquaintances or hey your kid has what my kid does lets be bff's or whatever you want to call it. You do learn over the years who knows their stuff and thank goodness this Mom does.

She explained what I haven't been able to because I just didn't get it. Sometimes anything above the stuff gone over in my home or in the ER I don't know or get every term, and I try not to until it applies to me because my brain is too full. I am getting too old, and frankly there isn't much space left.<<
I knew MECP2 was the gene on the X chromosome that made the protein that makes your Neurons fire and that gene doesn't turn on until you are 6-24 months of age. This is why our kiddos seem normal until Toddlerhood. I AM A PLETHORA of made up run on words today!

Elizabeth (Grace's Mom) put it perfectly in her blog this weekend and I wanted to share it with all of you.

You can find it and more on her website
Grace for Rett

and the post

...In Plain English...

Thank you Leana

A few blog posts ago I went on and on about the Disney Marathon and shared lots of pics with you.

What I didn't have at the time was any pics of the woman, then only woman who ran in Abbys honor.

A stranger

A stranger who picked a Marathon and a cause and wanted a child, a local woman. The child she got was mine.

She fund-raised and did very well for GP2C. Especially for someone who didn't know the child for who she was running.

I am in awe of her and of all people who raise funds and awareness for causes that don't affect them personally and we all hope and pray never will.

Thank you Leana and family.

Team Sparkle runs for Rett.

Hello all. As I save before I stink at Fundraising! What a way to open a blogpost huh?

I need help from you to change all that. Im a quitter. Its terrible but I am. I like to think of it as more of a Why botherer..is botherer a word? A whole lot of hurt feelings and why doesnt anyone care comes out of fundraising for those of us that stink at it.

Truth is rich people are excellent at Fundraising because...drumroll........they have money and know people that do. Tah dah! I however have holed myself up in this house spending every waking taking in every breath of my girl. Dont cry ya big babies. Its true and its my choice. I don't make any effort to get out and about or associate with anyone outside of the special needs world. Why? Honestly it's cause I  don't like it much. When the world quit working the way I wanted to I stomped off......

But

These 6 AMAZING women are going to run 195 miles for 195 girls that suffer from Rett Syndrome. Our daughter will be represented and we have committed to raise $100 - that's just 10 people giving $10!  Who doesnt have $10? If you would like to be a part of this extraordinary event, please click on this link


Abby's GirlPower Page



I clicked on it and was shocked and a little embarrassed that their were no funds listed as given in Abbys name. Really? None. That has been a kick in my butt. I hope ya'll are reading this in this fired up southern accent I seem to be typing in....and yes Im this weird in real life!

Carrie will run mile 153 for Abby.Carrie will be around 9:15 PST - so 11:00 my or CST time on April 5th  The estimated times are based on about an 8.5 minute/mile. We will be posting pics and cheering on the runners over more than a 24 hour time span.

Team Ragnar 4 Rett

Did I mention that if our goal is reached along with the other Rett girls being represented, $20,000 will be raised and will go directly to fund continued research? How AWESOME is that!?!

Thank you all!

Abby is sleepy

Last night, at the time I didn't realize what I was getting. I knew in my head that she was tired and ready for bed but didn't realize she was telling me until I watched this right after I took it.



For a kid with a disorder that keeps her from intelligible speech and no purposeful use of her hands. This little girl just told me she was tired and wanted to go to bed!



She is so awesome! Im not the hero. She is!

AN ACCESSIBLE VAN FOR ABBY!

Dear friends ...

As you may know I have been nominated to win an adaptive van....for Abby in the National Mobility Awareness contest. I would appreciate the support by voting and sharing with your friends and family. This would change our lives greatly. Thinking of no longer having to leave Abby out because I can't lift her and her increase in safety is invaluable. The thought that my back,neck and shoulder may get a chance to actually heal brings tears.

Just a few weeks ago I had to cancel a day trip with family because I just couldn't do it. I couldn't lift her into her chair then out of her chair and into the can then have to lift the 44 pound chair into the back. It has been months since I  could do it without having to ask for help. I almost can't imagine just opening a door and rolling her into place and fastening her in. Wow that's almost how normal people live.

It just takes a minute or so and you can vote every 24 hours until May 9th. You can also share on any ANY social media you belong to!

To keep track daily join this blogs Facebook page at : Abbysworld on Facebook
To vote now or anytime go to the link below!
Thank you all so much for your continued support!
Vote for Teresa Vejrosta - Kansas City, MO in the 2014 National Mobility Awareness Month Local Hero contest!

Best Dressed Baby in the ICU: You know you're the parent of a medically fragile ...

A friend posted this blog on Facebook and I have to say it is the most true and applicable to our life things I have ever read.

Thank you once again family off Ella Grace for writing the words of our hearts!

Best Dressed Baby in the ICU: You know you're the parent of a medically fragile ...: - You get asked at least once a week if you are a nurse. - You have more medical supplies stockpiled in your house than a third world coun...