Monday, April 21, 2014

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...

Thursday, March 27, 2014

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.



Thursday, March 20, 2014

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.


SPONSER MILE 153- ABBYS MILE


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!?!


So $10.00 from all 10 of my readers OK? LOL.... Ready...set???GO!!!!!

Thank you all!

Wednesday, March 19, 2014

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!

Saturday, March 15, 2014

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. As her primary caregiver I cant tell you how much all of your support means to us. My husband and Abbys father, worries constantly about us, but as our provider he works many long hours and just isn't available to be here as much as I am.

Even though I am the one nominated, We consider this to be something for Abby as we do everything in life. Our hearts, our souls and everything we are is for her.


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!


Wednesday, March 12, 2014

Vote for Teresa Vejrosta - Kansas City, MO in the 2014 National Mobility Awareness Month Local Hero contest!

Dear Friends,

My friend Pam, whom I have mentioned on my blog several times over the years has entered Abby and I in A national contest to win and adaptive van. Only 3 vans are given away in the country so we are encouraged to use all social media available to obtain votes and or get the word out.

All you have to do is click on the link and hit login, you can enter your info or sign in with Facebook, In or G+

We have to make all efforts to make this a movement for me and my special one. You can share through email,Facebook,Twitter,Pinterest.bloggers and more....and you can vote daily!

Please take a the time to vote and share. It would mean the world to us!



Vote for Teresa Vejrosta - Kansas City, MO in the 2014 National Mobility Awareness Month Local Hero contest!





Entry Photo for Teresa Vejrosta - Kansas City, MO

Hello. My Name is Pam Pelzman and I would like to nominate a local Hero for The Mobility Awareness Month Campaign.
My hero’s name is Teresa Vejrosta and she is the mother and caretaker of a child with Rett Syndrome. Her daughter Abby is completely reliant on Teresa for every aspect of her care as she cannot speak, use her hands or arms and suffers from extreme apraxia.
Teresa is a hero to me because she shines in the face of something that would bring most people down. They live in townhouse where the bedrooms and bathroom are on the 3rd floor. She has to carry her daughter up and down those stairs, which are narrow, in and out of the tub and in and out of her bed several times a day.
Because Abby requires total assistance, Teresa also has to pick Abby up and load her into a small non accessible vehicle then load the heavy wheelchair in and out several times per day. Teresa has two bulging discs in her back, a rotator cuff injury, and a bulging disc/pinched nerve in her neck. She is constantly concerned she is going to hurt Abby or herself while loading and unloading.
The thing that makes her a hero to me is that on the days Abby is in school and doesn’t have appointments, Teresa volunteers as a parent mentor and advocate for those with Special Needs and their families in Missouri. When most people would dive back into bed, Teresa drives to a local University so she can make a difference. When you ask her how and why she just smiles and says,”I know you don’t understand but I have to do this. Helping these people makes it all make sense for me. If I can help just a few people so they don’t have to feel alone and overwhelmed, I can have peace in my heart. It’s my way to fight.”
Teresa also sleeps with her phone, just in case a parent needs someone. If I could help take some of the physical labor and pain away from her I would feel like I had performed a miracle for someone that deserves it more than anyone I know. To not have to lift and to have her child be safer in their much used vehicle would be great reward for my local hero.
Thank you.

Saturday, March 8, 2014

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...