Friday, August 15, 2014

Strolling for a Cure

On September 6th, we will be joining other families in a strollathon, the signature fundraiser of (formerly known as the International Rett Syndrome Foundation) to raise much needed funds for the search for a cure. I have spoken recently about my feelings about a cure and how it simply terrifies me to think about it too long and too hard because my hopes just start to soar. But regardless of my protective coping skills, progress is being made all of the time in the search for ultimately a cure, but also treatments for symptoms. 

In 2007, Rett Syndrome was reversed in mice in a lab. Click on the link below and watch the first two videos on the page. The first is before the reversal, and the second is after. That could be Lucy someday. But isn't everything always about money? Unfortunately it is, and we as a community of parents and loved ones of girls with this miserable condition are often the ones out beating the streets, asking (begging/pleading) for the crucial funds to continue research so that our sweet girls might someday get to live full lives. It costs money to safely translate the success in mice to humans and we just want to help move that along as much as we can. 

There are also several very promising clinical trials taking place throughout the world, testing medications that could change Lucy's life. They also cost a lot of money. I know that money doesn't grow on trees, and that everybody works hard for what they have.  We are just asking that if anybody who can spare anything, ANY amount, would be willing to sponsor us in the strollathon, we would be eternally grateful to you and thankful for your caring and generosity. We just want to see a cure within Lucy's lifetime, and from what we hear, this is a very real possibility, but not without the funds that keep the wheels turning. 

Anybody who is interested is more than welcome to also join our team and help to raise money by getting their own sponsors, and participating in the strollathon with us. The more the merrier!

For anyone else, please feel free to make a donation that is comfortable for you. Again, the Shaffer's and the Rett community will be forever thankful to you!

Please visit the link below to join Team Lucy OR to make your donation:

Team Lucy's Strollathon Page

Here's Lu helping me to prepare a container for some Brussels sprout seeds yesterday afternoon. She always asks to garden. What if someday she could do it without a walker, braces on her legs, and me needing to help her hold all of the tools, and guide her hands for planting the seeds? What if she could do that someday? 

Saturday, August 9, 2014

Every Single Word

You know, I wonder if people who read my blog ever think, "Ok Julie, we get it, Lucy is awesome, and she talks to you all the time!"  But what I really want others to understand is that Lucy talking to us, communicating with us, and sharing herself and her personality with us NEVER, EVER gets old! Once a person [doctor] tells you there will be nothing your child can do, she will basically be a vegetable, and then all day every day she proves him wrong, you never forget what he said. I am never less amazed, or delighted, and I am always thankful every single time she talks to us. Even when she's just exploring and "babbling" by saying random words, she is talking! That might sound unrealistic, yeah, sure Julie, you cherish every word that your daughter utters all day long...but, yeah, I really, really do. 

In the past couple of weeks Lu has been developing a little of the "mine" attitude that children go through and we are loving it! We talk to her about sharing and not being greedy, but at the same time, it makes our hearts melt to have Lu doing anything "developmentally appropriate" such as claiming everything as hers. She loves chocolate no-bake cookies. I don't understand why they don't make her choke, but they don't and she wolfs them down.  I don't make them because my Mom makes them pretty often and sends some down to us. The other night before supper I brought some in and showed them to Lu and said Grammy sent some of her favorite cookies. Well, after supper, Chad opened the container to have one and Lu immediately said, "Mine! Mine!" with her Tobii. It was adorable! And so unexpected! We reminded her that Grammy sent them for everyone and we would share them. Then, a few nights later, also at supper, Lucy said, "I want, mine channel, mine, mine, channel" or some similar combination of those words. And she seemed to be looking at Chad. I asked if she wanted to watch her channel when she and Daddy watch cartoons, and she emphatically nodded "yes"! 

Chad and I tell Lu all the time if she thinks of anything in particular that she wants for supper to let us know and one morning she said, 

Needless to say spaghetti was served for supper that night and Lu and I made a homemade apple pie in the afternoon to have for dessert. One day last week I made a pageset up in her Tobii with some fabric choices from the site to see what Lucy might like for a pair of arm braces she has started to need. Immediately, a pattern caught her eye, and she repeated it over and over, even after I encouraged her to explore her other options, she still constantly came back to that one choice. After some time for Lu to look at all of her choices I asked her which was her favorite and not surprisingly she chose her first choice. She knows what she wants and is really starting to be able to tell us more and more, so she doesn't have to just settle for whatever I or anybody else chooses for her. 

Yesterday morning Lucy said:
Why, yes, yes we do, Lu. Perfect observation.

I cut my finger badly two week ago and for like a half hour it just wouldn't quit bleeding. When I finally got it under control Lu and I sat down to eat lunch and she said with her Tobii, "Are you alright?" That us all one button she can choose. She might want to hog all the cookies, but she still has compassion and cares about others which to me is one the most important character traits to instill in a child. 

And last night at supper, I told her she could have [one of Grammy's] cookies for dessert and then chad reminded me that we also have ice cream and hot fudge that she could have. I said to her, "Or you can have ice cream if you want." She said with her Tobii that she wanted to use her book. Right now Lucy is transitioning between a 20 per page book to a 64 per page and when she says she wants to use her book, I give her the choice of which she wants to use. She has mostly been choosing her new book, but last night she chose her old book and said, "I do, want it". I asked if she meant she wanted the ice cream and she very emphatically nodded "yes"! 

I said to Chad last night that I believe eventually Lucy will use her alternative communication system as naturally and fluently as we speak with our mouths. I think getting girls started as early as possible is critical to helping them understand that this is just how they do it, and it becomes the norm to them. It often occurs to me, kind of surprisingly at times,  that Lucy doesn't talk with her mouth. We talk to each other so much all day, that I seldom dwell on her being "nonverbal".  Even when we might be on the couch, in the middle of a crying episode where she is so distraught that she won't even look at her book or her Tobii, she will still often answer my yes and no questions to determine if she knows what is making her cry so I can possibly help. Does Lu use her mouth to speak to us, aside from the occasional, no, yeah, ma, da, nope she doesn't, but does she let the world know who Lucy Shaffer is anyway, uh yeah, all day, every day!