Wednesday, December 31, 2008

2008 and The New Year

What a full and crazy year 2008 has been for us. The year started with some scary times and several surgeries for Abby's Mommy. We got her through with support and love.
We met some absolutely wonderful people that got us through the rough spots of Rett Syndrome with their love and devotion and example. Thank you so much to our friends we made or became closer with in 2008. Carrie and Avery, Kelly and Brooklyn, Ingrid and Sarah, Kim and Karlie, Jen and Em. No one wants to have met the way we did but I do believe that we for one would be lost without your love and your shoulders.
After 2 years we have finally started to come to terms with what we have to face. Always the brave face to the world but not always so much at home. There has to be a reason for this. If it's to touch a few peoples hearts and make them better people through the absolute love and devotion we have then so be it.
We are learning to accept and love the pure innocence and beauty of our Abby. She has taught me so much about life and love and determination. That pure smile she has fills my heart with so much love and pride it is unexplainable.
In 2009 we will continue or fight for a cure through advocation, education and determination. We will fight for the acceptance of our families. We will continue to hope for donations from you for the equiptment and therapy our daughters need as hope you will also continue to support programs and politicians who fight for the disabled. Cutting programs for children and people with disabilities should be the last thing to go. Not the first. Thank you Govenor Blunt for teaching us what a Govenor should not be.
Please fight for equal rights and services in every state for every person. Missouri is one of the worst for children with disabilities. Please help us fix it.
For those of you who are good enough people to love and support your girl with Rett Syndrome unconditionally. Whether it be a Grandparent or an Aunt or a friend. God Bless You. I can't say how much that means for the people you support. You are amazing.

Abby thanks and loves all of you. This little face above is the one I wake up to every morning. As hard as she struggles this is her. Happy and loving and sweet. How could I ask for more?

All our love,
The Vejrosta's

Friday, December 26, 2008

Christmas changes

Traditional Czech Dinner on Christmas Eve Oh yah it's my Wiggles!
Daddy putting everything from her stocking on her~
Abby with the hat the Irby's sent
Abby wondering why we keep showing her stuff when we know she is supposed to be watching the wiggles!!!!!!!!!!!

Wow. If you are like us Christmas last for days among many houses so we wont be completely done until Sunday evening.
This Christmas was a little different. I was expecting a little more from Abby this year and sometimes I forget that the Rett monster is in charge. We have been seeing so much from her lately I dont know what I thought was going to happen.
Her 16 year old brother woke us up because he was tired of waiting. Not thining that Abby needs a good hour of leave me along space out time we dug right in and I don't think she was ready. She just really seemed confused to why we kept showing her stuff when she wa supposed to be watching her wiggles. Good thing for us we had ordered 2 videos and 2 cd's. One of the videos was so old that Anthony was Captain Feathersword. She finally perked up when we put in the videos.
The cd's confused her I think and we may have to listen to them in the car first. She didn't seem to understand why she could hear them but not see them. We take so much for granted sometimes.
We did a Christmas exchange with my online Rettmoms from my group and Abby got some wonderful homemade gifts. We love them!!!!! All in all she was pretty happy and her and her brother are pretty spoiled. Well her brother is anyway!!!Hope you all had a great Holiday.

Tuesday, December 23, 2008

Having a ball!!!!

Having ABby home from school this last week has been so much fun. To see how excited she gets over the tree and the gifts and learning. I think she is finally coming out of regression. It's hardly ever that I see her just blank anymore. She isn't going to walk better or be able to talk now or use her hands but you can really see that she is in there. She is so sweet and innocent and she tries so hard you can't help but love her and want to give her the world.
Here she is dancing with Diego!
Wow Wow she loves Wubzy!
And she really loves Blues Clues. She goes nuts when she sees a clue and hits the screen and screams.
My little taste tester chocolate monster!
What? You got a problem????? LOL!!!! Man I love this kid!

Saturday, December 20, 2008

Thank you Mama G, Avery and Carrie

Abby got a new Poncho. Just like Avery's and she loves it!!!!!!!! Look how thrilled she is! She was squealing and laughing. It was so awesome.
Seriously she was flippin out.

Little fashionista. Thanks you guys!!!!!!!!!!!!

Friday, December 19, 2008

Oh Christmas tree. Oh Christmas tree!

I finally decided to cave and put up a small Christmas tree this year and the kids were so excited!Oh boy. Bubba is helping Abby decorate the tree!Oh I so love the tree Mommy. I am going to have to kiss it!Antd this was taken as I started to knock the whole thing over with my excitement! Bubba and his baby sister in front of their tree! They are so cute together!

Tuesday, December 16, 2008

Let it snow let it snow let it snow

I love snow! This was early this morning in my front yard straight up in the sky as it fell Abby's all excited. She wants to go to school in the snow!!!!!!!! Our little pink Eskimo princess!
Looking like it's gonna get bad. No school after all. What a bummer. Abby loves to go to school, where she also rules her kingdom.

Awwww that's ok. Abby loves to drink chocolate pediasure and let it dribble in puddles out of her mouth. I would probably eat chocolate like that if I could get away with it.

I know! She's that cute in person too!!!!!!!!!!!!!

Wednesday, December 10, 2008

Tis the season..and stuff

Here is a pic of our first snow. We didn't get much-just an inch over ice. I was on the way home from the gym yesterday at 5pm and it was so much fun to drive in! Here is my little angel being oh so cute in her Christmas bandana doo rag. She started back to swim for the first time in a month yesterday and was very lazy about it. $68.00 an hour to have someone drag her around the pool. Geez!
We are still having nutrition issues but it's a learning process. She is stubborn and only wants to eat when and what she wants and if we dont like then we can just wear it! Thank goodness for pediasure!
We just signed up for a Rett fundraising activity in April and are so excited. So be prepared cause ya know you are on my hit list!
Dont forget that you can donate anytime if you click on one of the tabs to the right----> under donate to research.
Love and Peace

Friday, December 5, 2008

School Christmas Party

We took Abby to her school Christmas function/gala last night. They ususally devide these things up between the morning and the afternoon session and boy was it a circus.
This is Abby with her best friend Madison. Madison is VERY protective of Abby and very helpful.Madison making sure Daddy is doing it right!Abby making her Christmas list with Ms Elizabeth her OTMailng her list to Santa Telling Santa all about it.Abby and her boyfriend BradyOk Daddy I am so done.Miss Abby is still having feeding issues. She is now refusing to eat until she has been up 3-4 hours. Her reflux is very bad and I think we are going to have to up her previcid. It's almost time to her weight check and decide whether she needs a tube or not. I hate to do it but I can't have her be malnutritioned. She has enough problems. It's down to convincing Dad at this point.

Monday, December 1, 2008

Princess Sicky poo

Abby is sick. Of course we dont know the exact reason because she cant tell us. She has been refusing food for going on the 3rd day. Whatever we do manage to get her to open her mouth for comes right back up.
Friday night she started having some pretty aweful tremors and we thought she may be siezing. She is not really wanting to walk and when she does as soon as she stops she gets stuck and cant move and just trembles and whimpers till someone comes and gets her.
At this point I dont know if her nerves are causing her stomach to be upset or the other way around. I know we are both exhausted and I just broke down and cried myself to sleep after finally giving her some emetrol and benedryl last night so she could get some rest.
Keep her in your thoughts and prayers please so we can get our happy little girl back soon.

Thursday, November 27, 2008

Thanksgiving for my little TURKEY!

Wow. It's been a crazy week. We had our Thanksgiving today. Everyone is stuffed and lazy. Just the way it should be! And NO I AM NOT GOING SHOPPING TOMORROW! I am not THAT crazy.
Here's a pic of my little turkey girlNo! I dont want to eat my dinner! Give it to Bubba! I wanna bite my Daddy so hard he has to put me down and leave the house! I'm sorry Daddy. Here's a big kissy!
And one for Mom Look! Twins!
I am just too cute. I know!!!! Mom only takes my pic lately if I'm wearing this shirt. I have more. I really do!

Saturday, November 15, 2008

And then all was right with the world

This time of year, for some reason especially this year is hard. To go to the shops and see all the tea sets and grocery sets and little kitchens out and to know that my daughter can't play with them is heart breaking. Oh she'll smile and throw herself about but it wont be the little tea parties I dreamed of.
You would have to know a Rett girl to know that when we describe no purposeful hand use it means just that. She can't pick up or reach for a toy. She can smile at it at hit at it. But she can't pick it up or hold it.
Tonight we were laying in bed and when I put her down I asked her where she wanted her Kitty. She touched next to her on the bed with her face then smiled at me so I put Kitty there and put her arm over her. She went right to sleep but woke up about 20 minutes later. She looked at me and smiled then looked at her kitty and nudged and moved it with her head until the Kitty became her pillow. I just had to get a pic and go get her Dad to see her. AWWWW!!

Monday, November 10, 2008

Out of the house

This weekend we decided to follow Daddy up to his hotel where he works instead of being stuck at home without a car.BORING!!!! I can't believe I worked at hotels for so long and such long hours. We were bored to tears until we found our own fun.
Here is Abby being pretty and lazy in the king size bed she took up all of

Abby playing possum

OMG Mom is blowing bubbles

I'm gonna get it!!!

Got it. Funniest thing ever!

Teasing her Daddy. Denying kisses.