Catch up on my Mom and some awesome pics

These first few comeback blogs will be from Abby's perspective or narrative as her Mom thinks it is

My Mom has been complaining of back,neck and shoulder pain for over a year. When she finally got someone to take an MRI of her neck she had Neuro Surgery a few days later. She has some extreme problems with her left shoulder too but they wont address that until 3 months after her neck surgery. She is trying and I have had lots of nurses in her helping her help me as she hasn't been able to lift me and can barely help me at all. We are going to get her better. It will just take a while. I'm kind of done waiting and want my Mom back!

The week before my Moms surgery a friend of a friend, who is now our friend took some amazing pics of us the week before Mothers Day. They came out pretty cool. I wasn't feeling too hot that day but the pictures are amazing.

 This one is our favorite

 I was watching the waterfall. I love water

 I was getting pretty grumpy here so we are watching Dora just out of the shot of the camera

Our friend Cynthia had loaned us this beautiful gown. I felt like a real Princess! After she saw the pics she gave it to me!!!

 I think this was close to the last shot. Getting sleepy. We are thinking of getting one of these matted and framed. Krissy B Designs did an awesome job. She was very patient. We highly recommend her!

My Mom took this one with her iPhone while Krissy was setting up. I think its beautiful!

We are back!

I have missed my blog and am re opening it. There are some things I want to say before we all proceed.

1. It's my blog. Not yours. My thoughts, my feelings, my life and my experiences. Take your criticism and negativity and take it somewhere else. If you don't like me, what I saw or how I parent walk away. You choose to look for me and what I am doing.

2. Comments, spam and stats. I approve all comments before they are posted so when trying to rip me one with false information or negativity know that you and me are the only ones who will see it. Same goes with spam. Don't post generic whatever my title was links to your stuffy waste of your time. Stats. I know what search engine, city blog, website you came from and words you used to get here. Don't be a hater.

3.Do not judge me on the opinion of others. Have you met me? Walked in my shoes, cared for my daughter? No? Shut it.

4. I started this blog for a few reasons. First and foremost the reason I do almost everything. So another parent can come somewhere where someone gets it. To find info and encouragement. So people all over the world who love and care for Abby can keep up on her....and occasionally the people she loves.

5. I am human. I am not just the words typed on this screen. I am a mother, a wife, a friend, a smartass. I love fiercely and I fight the same way. Not everyone cares for me. That's cool. I get it. Don't care anymore but to each their own. I can almost, almost guarantee you that if you have seen me give a speech , watched me care for my child or yours you don't feel the same way as someone who hates to hate. I'm loud, I'm bossy. I have tattoos. I'm in your face when provoked. I will also sing a child to sleep or giggles, comfort a parent until they can breathe again and be the best inspiration you have ever seen. Please take your ignorance and move on to something or someone else.

For the rest of you .....
Big hugs. More to come soon!

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...

Daddy change the channel

The one thing us Special Needs and Rett parents harp on endlessly is the fact that our kids are in there. They are communicating. They can hear you. You just cant hear them...because you are not listening.

She can hear her thoughts. She thinks you can too. She looked at that remote and said change the channel. Did you listen? Did you look?

Teach the way she learns...and learn the way she speaks

She speaks

New research funding puts Rett Syndrome cure on the horizon | Business Standard

Researchers from Scotland and the US are taking a step towards reversing the effects of Rett Syndrome, a debilitating genetic disease affecting very young children in large numbers worldwide. 

Scientists from the University of Glasgow have been awarded USD 1.6 million to work together with three research institutes in the US to develop treatments for Rett Syndrome, a profoundly disabling condition that has commonalities with autism spectrum disorders. 

The grant, from the Rett Syndrome Research Trust (RSRT), will build an international consortium of researchers who will expand the breadth and depth of high-impact gene therapy research into the disease. 

This is the first research group in the world specialising in gene therapy to combat the disease. This consortium will build on recent research breakthroughs that have successfully used gene therapy to reverse the progress of the disease in mice. 

Future research will concentrate on developing similar treatments for clinical trials in humans. 

Rett Syndrome is caused by a mutation in the MECP2 gene that leads to numerous devastating symptoms, some of which worsen over time. 

It predominantly affects girls and causes severe regression in early childhood robbing children of the ability to speak, move normally and use their hands. 

The disease also causes disordered breathing, tremors, severe anxiety and emotional disturbances, seizures, and digestive, circulatory and orthopaedic problems. 

Although most children survive to adulthood they require total round-the-clock care for the duration of their lives. Researchers will target the underlying cause of the illness using gene therapy. 

See the article in it's entirety on The Business Standard Website







New research funding puts Rett Syndrome cure on the horizon | Business Standard

Go team!

Sometimes in my world of poor me, why me and general selfish boo hooness I forget how fortunate we really are. And as always, she finds a way to remind me.

This morning we were going through all the pictures people are posting from the Disney Half Marathon and surrounding races. Families, friends,siblings and complete strangers running on behalf of our girls. A complete stranger running in my own daughters name. For years the majority if not all of the money raised for research and awareness for our girls has come from their families. Strangers and the public taking a stand and getting involved is something of great relief for all of us.

We were talking about the great costumes, I must have a tutu and a cape....for starters. It was so fun to virtually cheer them on, covered in their GP2C gear. I started feeling it yesterday. I must be there next year. Will I run? Probably not but I will run in my heart and I will fundraise for Team Abby. I will encourage local and others to run in our name. But I will somehow challenge myself.

Looking through it all Abby was getting excited. She started to rock and verbalize, almost never words but sounds and shrieks. We had Dora the Explorer going on in the background, of course.We saw a pic of a girl with her family helping her across the line. I'm almost sure her mother had finished and then grabbed her so she could cross, but it was so moving. I literally just blew snot on the screen telling you about it.

That's when I heard it. Abby was rocking and woo woo wooing and there was a bully episode on Dora and the character said, "Roll away. " Abby shrieked "Row Away!" then turned to me and shrieked.
Big deal huh? It is. For the majority of our girls there is so sound short of a whimper when in pain.

We are lucky when it comes to Rett Syndrome. No, my daughter can't get up from a chair or couch on her own but I know a beautiful girl her age who is just now sitting up on her own.  Like most girls a giggle or a whimper is all you get. . No my Abby can't talk but she does. I'm sure of it. In her mind and every once in a while it comes screaming out. When those times come I am reminded that she is trapped, she is there and I need to fight for her more.

I do get fed up and I have times where I just want to live and accept our fate. I don't want to scream Rett from the rooftops 24 hours a day. I just want to be her Mom. It's time for another round and I'm ready to fight.

Roll away Rett roll away.

The half marathon is tomorrow but there have been races and events leading up to. I will leave you with pictures but I am going to lace up my shoes and get in shape.

Ding Ding!

 Ingrid. Founder of Girl Power 2 Cure and one Bad A## Superhero herself!

 This is what it's all about!

 See that girl on top? The first one? Thats mine!

 Rockin it!

 There was a time that I would have been in the middle of a pic like this. Cept I would have been rocking a tierra! Come on ladies!

 This is why

Go team go!

 Being the best sister ever!

 Spread the word!

 Amazing!

 Go team!

This is what love looks like!                                                                                                                                                                  

To learn more about Girl Power 2 Cure click here GP2C

To purchase items you see in this blog click here GP2C STORE

To donate or get involved click here GP2C Get Involved!

***If you are a runner or want to be and are interested in participating next year on Team Abby please contact me at terri.vejrosta@gmail.com

Abby can danceydance!

Last night Abby was on a roll. She was dancing and giggling and likes she does, she wanted me to sing every song and dance with her. I sat down next to the tv so she could still watch and her nurse got this video. So honored that I get to live in HER world where everything is Happy and she is surrounded by nothing but joy and love.

New research funding puts Rett Syndrome cure on the horizon | Business Standard

I woke up this am to find the most amazing news. We are on our way...and as we sometimes forget....there is hope.



Researchers from Scotland and the US are taking a step towards reversing the effects of Rett Syndrome, a debilitating genetic disease affecting very young children in large numbers worldwide. 

Scientists from the University of Glasgow have been awarded USD 1.6 million to work together with three research institutes in the US to develop treatments for Rett Syndrome, a profoundly disabling condition that has commonalities with autism spectrum disorders. 

The grant, from the Rett Syndrome Research Trust (RSRT), will build an international consortium of researchers who will expand the breadth and depth of high-impact gene therapy research into the disease. 

This is the first research group in the world specialising in gene therapy to combat the disease. This consortium will build on recent research breakthroughs that have successfully used gene therapy to reverse the progress of the disease in mice. 

Future research will concentrate on developing similar treatments for clinical trials in humans. 

Rett Syndrome is caused by a mutation in the MECP2 gene that leads to numerous devastating symptoms, some of which worsen over time. 

It predominantly affects girls and causes severe regression in early childhood robbing children of the ability to speak, move normally and use their hands. 

The disease also causes disordered breathing, tremors, severe anxiety and emotional disturbances, seizures, and digestive, circulatory and orthopaedic problems. 

Although most children survive to adulthood they require total round-the-clock care for the duration of their lives. Researchers will target the underlying cause of the illness using gene therapy. 

They eventually hope to develop treatments capable of reversing or preventing the symptoms of the disease meaning that sufferers will be able to lead relatively normal lives. 

........

read entire article and fascinating news for our girls below



New research funding puts Rett Syndrome cure on the horizon | Business Standard