Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Wednesday, July 28, 2010

Abby and the Ipad

Communication Devices

Wow! Today was so exciting! Abby and I went to check out a communication device called a Tobii C eye.  I have been wanting to see what Abby can do with one since we saw the device at the IRSF conference in May.  It was pretty amazing.  Since Abby doesn't have hand function and doesn't speak, she needs a device that can track her eye gaze to communicate.  Essentially, her eyes are the mouse.  When she looks at something for a determined amount of time (less than a second for Abby), the item/picture/symbol that she is looking at is selected.  The possibilities are endless with this type of technology.  After calibrating it, Abby played a few simple games and did great.  She made selections SO much easier with her eye gaze than with her hands.  She didn't have to work so hard to make a selection.  Getting her hands to hit a selection is SO difficult for her.

There are a couple different companies that make eye gaze devices, so we will have to check the others out as well.  We are now on the waiting list for a trial (which is about 3-4 months long).  We need to get the funding from insurance or Medicaid before the trial starts, so that will keep me busy until then.  This was the motivation I needed to get my appeal letter in the mail for the insurance.  I am still waiting for the letter telling us if Abby will get the Michelle P Waiver and Medicaid.  One of them will pay for it, one way or another.    

I am very excited for what a device like this could do for Abby.  I can't wait to have one in our house to see how she responds to it.  It could be life changing for all of us.  It's going to be a long process to get the right device.  I know some of you have been through this before, so I would love any advice you can give! 

Monday, July 19, 2010

Through the Years...

So, I have been organizing our family photos so that we can back them up on a drive.  We don't print out many of the photos, so we want to make sure we don't lose them if something happens to the computer.  You can imagine how hard it is to sort and organize photos from the past 4 years.  But, I did it.  I even deleted some a couple.  There were photos of the kids that I had at least 8 copies of nearly the same pose, and I still hesitate to delete even one of them.  I have to post a few of my favorites of miss Abby.
Abby's 1st Easter-She was so excited to get her favorite book.  She could even flip through the pages!

When Abby had better hand function, she loved carrying around her babydolls.  And yes, she has rollers in her hair.  It was an experiment.

Our Little Angel

Friday, July 16, 2010

Today we had a home assessment to determine Abby's eligibility for the Michelle P Waiver.  This waiver pays for expenses that our insurance denies, among other things.  It went as well as it could go.  The woman told me she definitely meets the "facility level of care" that makes her eligible, and that she would be surprised if Abby doesn't get the waiver (we will find out in a month or so).  That was the result that I wanted, but I can't be all that thrilled that Abby meets the criteria for placement in a state facility (if she was unable to get the services at home). I know how severe Abby's disability is, but this was like pouring salt on an wound.

I had to explain in detail everything Rett Syndrome has robbed from Abby.  I usually try to focus on what Abby can do, but today the focus was every single thing that she can't do and every health problem that she has had, currently has, and is at risk for.  So much for focusing on all the good stuff, right?  To make it worse, Abby was right there with us, listening.  

Can she dress herself? Can she feed herself? Can she bathe herself? Can she transition from one position to another? Can she talk, read, write?  Seriously? I even had to look through her medical records to find the results of the genetic testing that determined she had Rett.  That brought up some fond memories.  Geez!

I think I just figured out why I have a headache tonight.      

I will try to be positive, even though its not coming very naturally right now.  If she does get the waiver it will fund her speech therapy and possibly allow her to start aquatic or hippotherapy again, which would be awesome.  The whole process takes a few months to get started, but it could get Abby a lot more services without us paying out of pocket.  The waiver will be a good thing, just a painful process to get started.

Sunday, July 11, 2010

So Grateful!

Through all the pain that Rett Syndrome has brought, I must say that is has enabled us to see such love and compassion in others as well.  The support and encouragement from our family and friends is amazing.  Abby is in the prayers of people who we have never even met.  She was just received two beautiful dresses in the mail from across the country from a woman who has never met her, although the woman has been praying for her for the past two years. How cool is that? 

Last week, a good friend of mine told me that she wanted to make a donation to help with Abby's medical expenses.  I was speechless!  I have raised money to find a cure, but not specifically for Abby.  I am so grateful that we have friends family who love our little girl. When Abby was younger, she had everything she needed through our early intervention.  We have just recently been searching for other sources of funding for some of her therapies that our insurance is denying.  It is a quite an expense, considering the frequency and communication equipment that she will need.  It is amazing that a donation has been made before we even set up a fund.     

I want to thank you all.  We don't take for granted your words of encouragement, your kindness, and your generosity.  Knowing our friends and family are not only joining our cause, but that they are also thinking about ways they can make Abby's life better is humbling. We are so grateful! 



Wednesday, July 7, 2010

A Shameless Plea for Support!

There is a lot going on in the world of Rett.  There are many opportunities to help Abby and other girls like her to be able to do all the things that most of us take for granted.  A cure is going to happen.  Advances are being made, but it takes money to fund the research.  Here are two easy ways to get researchers the money they need to search for a cure.  

Vote in the Pepsi Campaign every day in July and share the link with all your friends. 

Vote ONCE in the Chase campaign and share the link with all your friends.

Links to both campaigns are on the right.  Thanks for your support!! 

Monday, July 5, 2010

Happy 4th!

Our sparklers went a little rogue, but Abby liked them anyway. This was the first year we have done fireworks. She seemed to have fun, although it was difficult for she and Logan to stay awake late enough to see them.

It has been SO HOT! If we are outside, the kids are in the pool. Even then, after a while, the water gets warm. Ugh!