Tuesday, March 31, 2009

Just A Few


Hello all. First I want to remind everyone that April is Autism Awareness Month. As some of you know Rett Syndrome is considered to be the very worst on the spectrum. Don't forget to donate if you can. Every little bit helps. $5,10,20,25 one time or even once a month can be set up by going here. There is a cure within our reach!
The above picture was taken today when we got home from the pool. Swim therapy or hydra therapy does so much for Abby. I attempted to get video today but when I turned my camera on it was outta batteries. Abby is always so much more alert and happy and just there after a swim session. I think it has such a stimulating affect on her. I cant wait to get video next time. The thing she is doing with her arms and hands seems to be her thing for "yes" and "yipee" I am so glad I captured it on camera.
I want to introduce you guys to our friend Little Joseph. Joseph goes to swim therapy around the same time as Abby and he is the cutest little guy. I don't think I paid attention to the second half of Abby's lesson today because Joseph was in my lap. He is such a little charmer. He crawled right in my lap and I sang his favorite song to him and we just had a blast. He has a video on you tube of him singing with his mom you can see by clicking here. I am also going to put a link to his video channel on the right. His Mom is so awesome. Today I finally got some attention from his lil sis too!!!!
Unfortunately we had to take Abby to the doc this week. We had an issue with a feed and she wretched so hard we think her fundo may have come loose. She actually vomited into her fathers lap(GO ABBY) and she shouldn't be able to vomit at all with the fundo. We also found out that she is not gaining enough weight-actually back down to her hospital dismissal weight so the doc put her on a new medicine to help with digestion in hopes that she can take more in if we can move it along. We started that one tonight.
SO that's it for now. And just in case you forgot you can donate to the Rett Syndrome Research Trust by clicking here up until April 15th.
Thanks
BIG HUGS
Terri and Abby.

Wednesday, March 25, 2009

Back at it.

Thought I'd share some recent picsThese were taken after being out back with Dad in a tshirt, diaper and a ball cap! She is starting to look much healthier although we still dont have here feedings were we want them.This was her all strapped up in her chair she has to ride in for the lift bus. You would think she was getting ready to go fly a naval jet. There is a waist strap, butterfly 4 way strap, one that goes over her head and buckels between the legs and at her chest. That's just for the chair. Then they strao the chair in for 5 minutes once she is on the bus! Down our very new, and very steep ramp.

This is the ramp. They still need to put skid tape down because it is very steep.


Peace

Terri and Abby


Friday, March 20, 2009

Abby's Shapes and Colors

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Well, I have been on an absolute mission this week. For a very long time I have fought a battle that no one but me seemed to hear. That my little girl is in there. Something happened this last week that just made me blow up.

My daughter has Rett Syndrome. It has robbed her of her speech. Her purposeful hand use. Her free will. I have read my last,"the mother claimes" I can't stand it anymore. She is not unteachable nor is she unreachable. She has more to teach us about patience and love and the brilliance that is in a child that so many have deemed a lost cause because of her disabilities.

She cannot talk but she can tell you so much if you just watch her. Let her show you. She is telling you so much more than you have ever taken the time to stop and pay attention to. Look in her eyes. Watch her movements. She is not capable of being consistent but she is capable. Let her show you.

Thursday, March 19, 2009

A great teaching tool

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I want to thank all the Moms that called or wrote when I started posting these videos. I wanted to post this one because it really shows the patience and awareness you have to have as a teacher or parent to get what your child is trying to tell you.

With the first question we can see that she is really trying with her arms going out then up and down. You can almost see the light bulb go on when she finally gets herself to choose horse.

We have really noticed how maybe people can get confused by the way she answers. We see her arms going out a an-ok let's see here- kind of thing as others were seeing it as always choosing the middle,neutral or false answer.

We wanted to post this one because you can see the confusion and frustration in her whole body language when she is asked the same question too many times. Remember that your apraxic child's thought process has to begin again or start all over again every time you ask. There is a good example of this when she gets to the baseball.

I so appreciate your great feedback.

Big hugs

The Vejrosta Family

Tuesday, March 17, 2009

Story Time!

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Today we read Abby a Clifford book. She loves Clifford.

The back and forth we get from her is amazing. I love being on the outside watching her be read to. She so enjoys it and it really brings her out. I hope you like the video.

For those of you who asked about the flash card books. Get out or go bome 3 ring binder type photo albums. We used photo albums because it comes with what we needed as far as the pages.

Go to any Walmart or Target and look through their flash cards. I open them up. When you find what you like, colors, shapes,objects....buy 3 packs or more. We have a same as book. One card on the top, three on the bottom. One with Shapes and colors and one that is just objects...Do you see the bunny? Things like that.

Good luck and keep those tips coming in. I am learning so much too.

Monday, March 16, 2009

Making Choices

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I have been going out of my head lately trying to get people and educators to get Rett Syndrome.

I have decided to start making videos of Abby when we are working with her at home. This is a video of her same as book. We have One flash card on the top with a picture then Three below and we ask her which one is the same.

Rett girls biggest challenge is communication and completion of synapses in the brain. Trying to get this point across to others in a way they can understand is very frustrating.

When a Rett girl wants to make a choice she is not always able to complete it. For instance sometimes she can bat at the picture and sometimes she is answering by looking at the picture or object. She cannot control what is going to work for her so it takes her longer and she has to try much harder. Much patience is needed. And giving up on her should never be an option. I hope you enjoy this video.

Thursday, March 12, 2009

IEP Individual Education Plan

IEP'S Stink. I hate them. For laymen it stands for the title above. It is basically a required plan for a disabled child. You meet with several teachers, therapists, administrators and nurses and decide what they will include your child in, what they are expected to learn for their age range and so on.
I gotta tell ya, in all honestly, when you have a child with Rett Syndrome these are absolutely heartbreaking. These are the times when the fact that your child will always go to school for socialization and therapy hits you in the face. With a lead bat. Every time you have it in your head that people are starting to believe your child is in there, even though she can't walk on her own, cant talk or sign, they send you a letter and report reminding you of what you don't ever say.
Now while you are there or talking to them they are all rah rah and understanding. But it seems you will never be able to get them to believe she was ever a typical child who was snatched from you in the night.
Now I'm not saying that I am not over sensitive because everyone knows I'm a big bawl bag but when you go over pages and pages of we will try to get your 4 year old to crawl-even though she cant and you know it. We will put stuff in front of her to stare at.......yeah I'm a little upset.
I don't want to read severe delay in every description of my absolutely beautiful happy completely normal looking child. I know it. Send those pages to whoever needs the report. Do not send those pages to me. It honestly just makes me want to keep her at home where she is the star of the world.
Ok, so now something to look forward to.
Abby's former Speech Therapist came over this evening to talk to us about the Dynavox Eyemax: http://www.dynavoxtech.com/products/eyemax/
It is a device where Abby would be able to communicate with us through eye gaze and is described as:
Say it with your eyes
The DynaVox EyeMax System is the newest, most advanced access method available to communicators who use the DynaVox Vmax. It is comprised of two parts: a DynaVox Vmax and a DynaVox EyeMax Accessory. The EyeMax System allows augmented communicators to access their Vmax with a simple blink, or by dwelling on a desired area of the screen.
It is amazing. It is also so expensive no one will tell me how much it costs. LOL.
So it is something we are going to talk about although I am so not ready to start another fight with the powers that be. I am so drained of it at the moment. Now if someone could assure me that they would so the testing, submission, get all the letters and fight all the appeals I would gladly jump on it in a second. This would so prove she is in there. She is.
So here is some pics of Abby with her former speech therapist. It was so great to see them together again and to see her with someone who believes in her.
HEY DONT I KNOW YOU?LOOK MOM! IT'S MY MIN MIN!

OH MY GOSH I SO MISSED HER!
THANKS GIRL. YOU BROUGHT A GREAT BREAK TO ANOTHER POOPIE DAY. NO PUN INTENDED!

Sunday, March 8, 2009

Craziness

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Thsi is video of Abby at the park with her Mommy and her nurse after a pretty busy week.
Her nurse is already under Abby's spell.
On Tuesday we got to go to swim therapy and wish I would have taken video there. Abby kept looking over at us and smiling and kicking. She is so cute when she shows off.
Thursday was alltogether a crap day. We had to take Abby to school to get her fitted for a wheelchair so she can ride the lift bus. I hated it. Seeing Abby arrive at school was awesome. You would of thought she was on her way to a wiggles concert. Her PT said that's how she arrives everyday, like she is so excited and happy she may burst. After school we had to go to an eval we had waited 6 months for and before we got in the door Abby got caught up and her gtube got pulled out so we were off to the ER and had to cancel the appoinment.
Friday was better. Friday morning we got some good news about getting Abby some equiptment and therapy that we have been on a list for for a long time. Then we took Miss Happy Pants to the park.

Thanks for visiting. We would love to know you were here!



Monday, March 2, 2009

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I thought I'd start this post with a video of my sweet baby with her new nurse.

Many of you have always asked how to help with our daughter who is suffering from Rett Syndrome. I need you to consider coming up with a way to participate with us in Dress Up 2 Cure for Team Abby.
Can you organize a block garage sale and donate part of the proceeds?
Can you hold a dinner at church?
Can we raffle off your services?

Do you belong to a social club that would like to get involved?
Can your business hold a Casual/Dress Down Day?
Can you send an email telling people about Abby and our cause?
Can you post something on your blog?
Can your dress up at work on April foold Day and challange your coworkers to do the same?

We are confident that research funding is the only thing standing between Abby and treatment. We really need your help and would be honored to have you on our team this year. Check out our team page at http://www.dressup2cure.org/teamabby . Then click, "JOIN TEAM ABBY" to get the ball rolling.Thank you!