Tuesday, August 19, 2014

What I did on my summer vacation

This summer has been pretty cool. We did a few things we've never done before. There is musch more we would have like to have done and experienced but again...the old Mom cant take it right now.

I started Therapeutic Horseback Therapy. Its slightly different than Hippotherapy where we mostly rode. Now we have to play games, do a bunch of PT and OT from the horse and follow direction. I cant do the last for the most part but my new horse friends help me alot. I sure miss my Jeff and my Joan from Thursdays though!

We took a trip! My Mom had booked it before she found out about her surgery and when she went to cancel our friends said no way! They did every lift, every bath, every dressing and changed me every time I needed it. Such a blessing and help for us both!

 We went to a place in Washington called Camp Prime Time. Its a fully accessible camp and many of our friends we have met online go there. It was a heck of a distance but we don't regret it at all. Washington is beautiful. The weather is great. We didn't see one snake, rat or roach and ready for this??? No chiggers!
 Our Daphni Jo and my Mom
 Daph and me just chillen watchin Pooh
 Me and my Jerimarie
 Dalisa got this pic of me on a boat at Clear lake. Love it!
 My Moms thought this treehouse was the neatest thing ever. There are so many things with Rett you just assume we will never get to do. Oh yah? Well I played in a treehouse!
 Ramp all the way up!
 My Mom has to help me cause I cant really to slopes up or down or uneven ground

 Jerimarie knew we was coming but we surprised Robyn!
 In the tree!
 Waterfall coming off Clear Lake
 Rim Rock Lake nearby

 Giant rec room/therapy room
 Green Neon exit sign! I must have one! Coolest thing there
Struttin my stuff of an even floor

 Air hokey
Fooz ball
 My nig helper Jenelle's head kissin me
 My first roasted marshmallow with my friend Addy
 OMG can I have some more
 Was so good
 My Moms and her big undercover attempt to surprise our friend Robyn who just thought we were being weird!
Many thanks to everyone that helped me and my Mom so we could have this experience. Jerimarie,Arlo,Devin,Lola,Jenelle. You are awesome!

Sunday, August 17, 2014

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!

Monday, August 11, 2014

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!

Friday, June 6, 2014

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

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......


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!?!

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

Thank you all!