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.

Monday, December 13, 2010

After reading a post from an amazing mom who also has a little girl with Rett (Thanks Bridget), I find myself very inspired to step it up with Abby also.  It is hard to stay motivated to make Abby work and work and work when evidence of progress is hard to find.  This is especially true for me when it comes to physical therapy.  For the past 3 years, Abby has had PT on at least a weekly basis.  Some of the time has been in the clinic and some of the time has been on a horse.  I have been so happy with all her physical therapists.  They have given me lots of strategies to help her maintain and improve her walking, balance, flexibility, and strength.  Even with amazing therapists, follow-through at home, and lot of hard work from Abby, she was still better off before we started.  It feels at times like we are fighting a losing battle.

Here's the thing, though.  It's not hopeless for a couple of different reasons.  Regression doesn't last forever and regaining lost skills is possible.  And if it is possible then how can we not keep trying, right?  Sometimes it seems futile to help her walk up every step of our stairs every time when go up every day.  It would be much easier to carry her.  But, if facilitating her so that she weight shifts, so that she trains her muscles to make the movements without having to "plan" them out, that would be something worth while.  Even if she doesn't walk up the stairs independently.  If she doesn't loose the ability to put each leg up to the next step, that would be something.  Trying the same thing over and over again can only help. And she deserves it.  Also, I am confident that there will be a treatment or a cure that will radically change Abby's life.  I want her body to be ready, to be strong.

The problem I have had recently is that I lose track of all the exercises that we should do every day.  I have an ongoing list in my head of things that are helpful.  When she sits on the potty, I stretch her heelcords.  When she watches TV, she get E-stim for 30 minutes.  She gets on the treadmill a few times a day for a few minutes, walks up the stairs when there's time, bears weight on her hands when she will tolerate being on all 4's, practicing sitting to standing whenever possible and on and on.  The list has been accumulating over the past 3 years.

I think its overwhelming because this list is only in my head, completely unorganized.  I used to have a list for each of Abby's therapies in the past, mostly to let each therapist know what she is working on in her other therapies.  It's time to make them again.  If I had a list of things to do with Abby everyday, maybe I could fit it all in.  So often, I go to bed feeling guilty because I forgot or didn't have the time to do everything.  My goal this week is to talk to Abby's PT about this.  Hopefully, she can help me come up with a realistic schedule of all the things we need to do.

That's the plan.


  1. my thoughts exactly. leah does move quite well still and i want her to continue to do so. but she's never had PT. ever. and i feel like i'm missing out on a lot of progress! i'd love to hear about some of her exercises sometimes (heel cords, e-stim, etc.???) so i can try them out with leah.

  2. I feel the same way. Cristia Isabel seems to have lost a lot of her mobility. She is doing less than when we started, but I also believe that by stopping her therapy I am only doing her more harm than what Rett is already doing. My dream is to see her walk again. I only saw her walking for a week, but that was enough for me to have this burning desire to see her doing it again! I need to create my list too. The list in my head is all over the place.

  3. "I am confident that there will be a treatment or a cure that will radically change Abby's life. I want her body to be ready, to be strong." I LOVE this, you took the words right out of my mouth, that is what motivates us, to be ready for the cure! I also would love to hear about the e-stim! Keep up the awesome work!

  4. Ann Marie you are the most awesome Mom, don't ever doubt yourself! Abby is so lucky to have you and Wes as parents!!!
    Love ya!

  5. I made a little checklist also when we really started doing so many different therapies with Reagan. I also made one for Lauren to make sure that I was also stimulating her throughout the day and focusing all my attention on Reagan or housework. Then it all went to hell in a handbasket the past several months. If I believed in New Years resolutions, it would be my goal to start again in 2011! Good for you for being proactive!

  6. First the new picture of her is beautiful!!!! Secondly, good for you! It is so hard to work on it all when there is so much to work on. Organization goes a long way. I was just thinking about breaking it out by days as I think that there is just too much to do in one day, some days I will have to choose to let a few things slide and make sure that I pick up on them on the other.