Monday, March 28, 2016

The moving target

Dr. Sasha always reminds us that Rett Syndrome is a moving target, meaning it changes all of the time, without warning. For example one day Lucy did not have seizures, and then the next day, without warning, she did. Once upon a time she had floppy muscle tone, and then one day it started getting tighter and her body started arching backward all...the...time. One day she could turn the pages of books, and then she couldn't. Unfortunately, the changes that occur always seem to be taking from her...until recently!

The other day I was folding clothes behind Lu while she had a feed and watched a movie. On her lap I had sat her singing Elsa doll and suddenly, it was singing! Lucy had managed to position her hands so she could press the button on the front of Elsa to make her sing! And then when she realized what she was doing, she did it over and over again and was so clearly excited and tickled with herself! I don't honestly know how long it has been since she was able to activate a toy like that all by herself.

When I mentioned above that Lucy's body started arching back, this pretty drastically effected her ability to sit unassisted. That was almost three years ago and in that time she has only been able to sit up on her own for seconds at a time, because her body just wouldn't allow it. But then a few weeks ago she was sitting for her PT, and doing a really excellent job! So, her super rad Dad started a sitting practice session each day while they wait for supper to be ready. And now, after three years of hardly any unassisted sitting, Lucy May has been sitting for minutes at a time, all by herself! 

And a couple of months ago Lu started being able to sometimes stand up from sitting, with little to no assistance, just holding onto our hands! This is super hard work for her and her body. Again, it was Daddy who first got this out of her. I think he is the best PT she will ever have, and he's not even a PT! 

The only downside to all of these wonderful new/old skills that Lu has acquired is the "moving target" part. For the past few years a lot of symptoms have either presented themselves for the first time, or have taken skills away from Lu, and our biggest consolation, our hopeful mantra is that "Rett is a moving target. It's always changing." And so we are often waiting for something that is making Lu's life harder to change, or go away, because eventually, it might. Not all things of course, and we know that. But now here we are with some changes in her body, and how Rett is presenting itself, that are wonderful! She seems stronger, and like she has gained a little control of her body back, and now instead of waiting anxiously for something to change so she will feel better, I am anxiously hoping that if anything does change it will only continue to be more positive changes. Unfortunately, upon being introduced to Rett Syndrome, it quickly establishes itself as cruel, relentless, and not something that tends to get easier to live with as time goes on. So, I guess I want to feel optimistic about these changes, but at the same time I know how quickly Rett can take from Lu, and that is so hard to swallow. HOWEVER, while I feel anxious, we will still keep working hard on what she has been excelling at, and looking for new things that her body might be capable of doing that she hasn't been able to do for awhile. Day by day is how we live here, and the days lately have been treating us pretty well.


  1. So happy to read this. And yes, sometimes managing hope can be a tricky business...

  2. How wonderful! So awesome to see her sitting all on her own!


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