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.

Saturday, November 20, 2010

Fashion week here we come!

Today, Abby took part in a fashion show for kids who are clients at the center where she gets her therapy.  About 80 kids with special needs participated, and the event raised money for the center, who doesn't turn anyone away because of inability to pay. It was inspiring to see all the kids making their way across the stage.  Some were wheeled, some walked, some use gait trainers, some ran, and a few even danced.  It was their much-deserved day in the spotlight, showing off their new duds.      

Abby got to pick out an outfit a few weeks ago (super cute red dress with silver tights and sweater).  She even wore a pair of magnetic earrings, which fell off before she hit the stage.  She wasn't thrilled about all the primping that took place this morning, but she was pleased with the final product.

She was anxious as she waited to go on the stage.  There were hundreds of people watching, and the noise and crowd were a bit overwhelming, but she did awesome.  She walked out with two volunteers, Lucas, and Julie. They were so sweet and Abby couldn't get enough of their attention.  Abby made an impression on the local high school basketball team that escorted the kids onstage.  It was a great opportunity to share about Rett Syndrome.  I'm sure it was a learning experience for high schoolers.  Abby's escort asked if I would take a picture of he and Abby to put on his phone.  Sweet.

She had quite a fan club that came to see her strut her stuff.  We have an amazingly supportive family.  All the grandparents and lots of aunts, uncles, and cousins were cheering her on.

Friday, November 12, 2010

A very early Christmas gift

I couldn't resist letting Abby have one of her gifts early this year.  Her Mamaw and Papaw got her this great chair.  I asked them to look for a recliner, or a chair that she wouldn't slide out of, and they found this awesome pink recliner that is just her size.  It's so soft and comfy. I wish we thought of it sooner.  She always looks so uncomfortable sitting on the couch (or sitting anywhere, really).  We reposition, and reposition, and reposition.  But she sits great in this chair without any sliding.  Love it!

Logan is still loving the chair his Nonnie and Papa Dave gave him last year for his birthday.  Clearly, they have the best seats in the house.  They're ready for a movie night!


Sunday, November 7, 2010

Thankful for uneventful days

Today was an uneventful day, and I'm thankful for that.  Abby didn't do anything that made me call the doctor, search the internet, or read through our Rett Handbook.  I didn't feel the need to stare at the monitor while she slept or keep an eye on her lips to see if they were a tint of blue.  She roamed around the basement without assistance for the first time in a long time, which is so great.  She swallowed well most of the day and was in a pretty good mood.  

Last week it was a seizure one day, blue lips a couple of times for a few days, eyes rolling in the back of her head one day. There were the usual melting spells and periods when she wouldn't swallow.  She walked okay one minute, but wouldn't even stand up the next.  It was not the best week.  She stayed home from school so that I could monitor what was up with her breathing.  I am thinking she was having small seizures triggered by breath holding.  

I'm still not used to it.  I call the doctor and try to get some answers.  Why are her lips blue when she's not seizing and seems to be breathing somewhat normally?  Is her breath holding causing seizures?  Why would her eyes roll back?  Why would she have a seizure out of the blue when she hasn't had one in 8 months?  What should we do?  

Abby's pediatrician is consulting with her neurologist and a pulmonologist, but I already know what the conclusion will be.  She has Rett Syndrome.

One day I might get used to it, but I'm not there yet.  I know all of the above are common in RS.  I know there is very little, if anything, that can be done about it.  It just doesn't seem like that should be the case, I guess.



Friday, November 5, 2010

In the next few weeks, Abby will have a lot of new things to start working on.  She is set to restart hippotherapy (horse therapy) soon.  She did very well with hippotherapy in the past, but they stopped taking our insurance. Now that she is on the waiver, she can restart.  With all the trouble she has been having with her unsteadiness, hippotherapy is a great thing!  

Also, her PT is ordering her a gait trainer and a Convaid Stroller/wheelchair, or something similar.  Now that she's too big for a child stroller, it is necessary to have something comfortable for her to sit in for those times when she isn't able to walk the distance.  Since she is unable to step up on the bus, she will use the wheelchair to get on and off the bus.  I have put off getting one long enough.  Her little feet are hitting the wheels in her stroller, so I guess it's time.

Even when she is anxious and unsteady, she will be able to walk in the gait trainer, as it will prevent her from falling.  I am hoping that it will give her more confidence, making her less anxious about falling.  I should point out that the goal is still to keep her walking independently.  Today she did great, and was able to walk around for quite a while without help at all.  At other times, though, she just needs assistance to keep her safe.  I am thinking of it as a temporary fix to her unsteadiness.  I am confident that she will be able to walk independently again soon.  That's not entirely true, but trying to remain confident that she will.

The thing that I am most excited about is Abby starting private speech therapy again.  Our insurance has denied her speech, so she has only had it at school since January.  Now that she is on the waiver, she will get it on a weekly basis.  This means we can start the process of getting her a communication device.  I can't wait!!!  I read about them all the time.  I know Abby will thrive when she is able to have a voice.  As soon as we start speech, I want to start the process of getting a trial of at least these two devices to see which would be a better fit:
Tobii  Ceye
I can't wait!! Though she isn't in speech yet, I have been in touch with a therapist who knows Abby, and we are completely on the same page.  I know it's a long painstaking process to get funded, but I can't wait!!

Wednesday, November 3, 2010


Most of this blog is dedicated to Abby and her journey with Rett Syndrome, but this post is about another amazing little kiddo.  Often, Logan plays the role of Abby's little brother, especially when he accompany's me at her school, therapy, or other appointments.  I'm sure he's had more therapy than any of his friends.  He knows all about communication switches and loves using them to tell stories.  He is one of the boys who is always jumping and running into things, yet he has never knocked Abby down, which is nothing short of a miracle.  They share smiles in their carseats-Logan especially likes Abby's sneezes and squeals.  Sure, he gets frustrated when she pats his head with her cast (ouch!) and is mad when he has to wait for her to finish on the potty before we are able go outside, but he is very gentle and sweet to her.  He runs to her bedroom to grab a pull-up and a wipe as soon as I take her to the bathroom.  They both like for him to feed her snacks, and he is happy to share his juice box with her.    He's a sweet little guy....feisty as any little guy I've ever seen, but sweet nevertheless.  

He is crazy about sports, or balls, or both.  It's an obsession, really.  Instead of playing at the playground, he wants to watch the people playing tennis.  I made a special trip to an amazing park that I though he would love, but he only wanted to stand and watch the UofL field hockey team practice across the field.  He can't get enough of Sports Center, and was loving laying on the couch watching the World Series.  I thought this was surely just a phase, but, when he starting grabbing the sports page, I began questioning that assumption. 

Fortunately, Logan is going to spend some one-on-one time with his grandpa tomorrow while Abby goes to therapy and the dentist. He is sure to have a blast hitting baseballs and shooting baskets.