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.

Sunday, May 20, 2012

Water workout

Abby started doing her PT in a heated pool last month and it got me thinking that we should take advantage of Abby's love of water.  She can't walk in the baby pool (the typical 12" depth is awkward) and she isn't able to stay upright in a lifejacket, so she usually sits in a float.  In an attempt to make the water a little more interesting/therapeutic for her, we bought this huge monstrosity for our yard.  The water is about 30" deep, so it lets the ring stay at her waist, giving her support if she needs it, but allowing her to walk safely.  It has a seat to catch her when she falls.  Today she was even putting weight on her hands as she walked! The resistance in the water will be super beneficial and I know she likes being able to maneuver around the pool independently for the first time.  Logan is going to have a blast in the pool this summer, too.  I love it when an idea actual works out....for now:)

When we bought this float for her at 6 months of age, we thought she would outgrow it over the summer.  It makes sad (and a little mad, honestly) every summer that I get it back out. I will be very happy when we can finally retire the blue duckie ring!

On a related note, check this out!



    

Tuesday, May 8, 2012

We caught one....finally!

We have tried several times to catch what we think are seizures on an EEG.  Her events/episodes/seizures are very sporadic.  She may have 8 in one day, and not another one for 3 weeks. We had an appointment with her neurologist yesterday.  He suggested that we add a new medicine because she continues to have events on a regular basis.  I am uncomfortable adding a new medicine without confirming they are seizures.  As we left the office, I asked if we could try again to do an ambulatory EEG.  That's an EEG that they hook up in the office, but we get to go home and return the next day to have it removed.  As it turned out, they had an opening.  Just so you know, that never happens.  It is usually a matter of scheduling the EEG several weeks in advance.  Although Logan was not thrilled for what amounted to four hours in the doctor's office, we had to do it.  I never thought I would pray that she had a seizure/episode, but today I did.  I am so relieved that she did have an event before we returned the EEG!! Hopefully, everything was working correctly and the doctors will be able to read it and let us know definitivly if these events are seizures of not.  Just knowing that we don't have to keep trying to catch one on the EEG will be a burden lifted.


Hopefully, Abby won't have to sport the head wrap again for a while.  I pulled out all the stops today trying to get her overly excited/anxious.  We went shopping, which made her a little anxious, but when I started running out of time, we headed to lunch.  If Chick-fil-a at lunch time doesn't cause a seizure, I don't know what will.....and it did. 


I felt more than a little guilty about trying to get her to have an episode, so I gave her plenty of time to relax and wind down after the EEG was removed. Sorry, Abby:( 

  

Walking with the gait trainer

Abby received a gait trainer when she stopped walking without assistance.  We were so happy to get it, but she didn't really take to it until recently.  She would stand in it, but wouldn't take many steps.  She did much better with a harness.  Now, a year or so later, I'm so happy that she his getting more use out of it.  We took it outside a few days ago and she did great.  I can tell it's a little awkward for her, but it will be great to have it available for the times when I can't walk with her and the harness.  Go Abby!

video

I think she's a little happy with herself!
  

Monday, May 7, 2012

Movie Night

I love it when these two cuddle together!