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, January 29, 2011

Rett Syndrome Featured on ABC's The View

Rett Syndrome was in the spotlight yesterday, as the Gutierrez family spoke openly about how the disorder has affected their daughter, Anna. Monica Coenraads, from the Rett Syndrome Research Trust, was also there to comment. Hopefully, the exposure will lead to an increase in giving and awareness, and a closer date to our treatment or CURE!!!

Wednesday, January 26, 2011

Happy Birthday Logan!

In the past, Logan's birthday's have been a little...eventful.  He was born right before an ice storm that left us without power in freezing temps. for over a week.  We had to pack up Abby and a 4-day-old Logan and stay at a hotel.  Not fun.  

We didn't do too much for his first birthday.  Abby had her first seizures that week, and we had spend several nights at the children's hospital trying to get them under control.  When we came home, we weren't much in the mood for celebrating and we didn't want to overstimulate a very drugged-up Abby, so we canceled his party that was scheduled for the day after we came home.  Not fun. We did have a get together a few months later, but still...

But this year was great!!  I think 2011 is going to be our year.  Logan had a party with some of our family on Saturday, and shared another birthday party at Gattiland with his cousin, Kaden, on Sunday.  Two birthday parties=lots of fun! He had a blast!  I think he is still on a sugar high from all the cake.

He got lots of balls for his birthday, of course.  The sports obsession continues.

I am holding Abby up, obviously, and Logan didn't turn 28. He shared a party, and a cake. Happy 8th Birthday Kaden! 

Little boy in a big bed

Logan absolutely LOVES the book his aunt Victoria made for him.  That's right, she made it.  It's a great book about sports that has lots of things to manipulate in it.  This is his favorite page...so far.  He loves moving the basketball in and out of the net.  Thanks Aunt Victoria!      

I am so thankful that the weekend could be all about Logan.  Abby didn't seem too upset that Logan was getting all the attention.  Well, maybe not all the attention....

Tuesday, January 25, 2011

Back on the horse!

Abby had hippotherapy today for the first time in over a year.  She is receiving occupational therapy in a clinic for 30 minutes, and then her therapist puts her on the horse for another 30 minutes.  I'm thankful that she was able to get the same OT that she had before.  Katie is great with Abby and already knows her needs.  As you can see, Abby was pretty excited.
Her  OT goals are to restore hand function to the level that it was prior to her breaks (bring drink to her mouth, grasp food and bring to mouth, etc.) and increase ability to bare weight on her arms. I hope that being on the horse with help with her walking by increasing her balance, strength, and flexibility.

Abby seemed genuinely excited to go to therapy today.  She had quite a few meltdowns last year when we had hippotherapy and did not hesitate to let us know when she was finished with both the horse- and the therapy.  That was not the case today, and I'm hoping that she continues to enjoy herself.  

I was surprised to see that the other little girl riding in the arena with her also has Rett Syndrome.  What are the chances of that?  I have only met a two other kids with Rett in this area. I'm looking forward to chatting with her grandmother while the girls get a work out.    

Thursday, January 13, 2011

Good Bye Naps!

Abby is just about finished with naps, unfortunately.  She will sleep on a car ride, but even then its just for a few minutes.  She will lay in her bed and have some down time when she gets home from school, but, again, only for a few minutes. She's just over it for now. 

Here's a few photos of her sleeping over the years.  I love photos of her sleeping.  I actually have a whole file on my computer titled, "Abby sleeping".  She falls asleep in the strangest position and places. Even so, she looks so peaceful, like her body isn't going crazy.

Yeah, she slept in a laundry basket sometimes.  It was clean and new, I promise.

Abby always sleeps in the car.  It is usually the only nap she takes anymore.  They are short, only a few minutes, but at least it is something. 

 Abby had an invisible-to-the-rest-of-us rash on her bum for about 2 years that she could not get relief from.  We used ointments and usually put onsies on her to sleep in so she wouldn't scratch all night, but nothing seemed to help.  On this particular night, I forgot the one-piece pajamas. She woke up in the morning with her hand in her pajamas. Funny.  

at the strollathon...sleeping

We knew it was time for a bigger bed

She went through a phase where she could still sit up, but she couldn't lay back down.  It was weird.  She also went through a phase where she could stand up, but couldn't get back down.  She would fall asleep sitting up, and just fall over.  The motor planning issues were a sign of things to come. 

Good bye, nap.  I will miss you dearly!  

Tuesday, January 11, 2011

Gym time!

When Abby was younger, we used to take her to this local gym to play.  It is a huge fun dome kind of place with trampolines, inflatables, tumbling equipment, foam pit, and much much more.  Oh yeah, and open gym time includes a hundred running and screaming kids.  It is not surprising that Abby didn't love it.  She put up with it, as she almost always does, but she wasn't overly enthusiastic either.  We weren't fooling her.  It was therapy.

I have been meaning to take Logan for a while.  I knew he really would love it, which he did.  He joined in with all the other typical kids jumping and climbing and running.  I was pleasantly surprised, though,  at how much Abby enjoyed herself.  She especially like walking on the bouncy floor.  I think it is meant for tumbling, so it has a little bounce in it.  She walked so well on it.  I am thinking I need this floor in my house.

That would be great.  

After this video plays, advertisements for other youtube videos show up, some of them not so appropriate.  Is there a way to stop that from happening?

And Abby is sporting a new haircut thanks to her Nonnie!

Fun Fun Fun!!!