Sunday, October 27, 2013

Busy girls

Both Lucy and I have been busy girls lately, which is my excuse for neglecting my blog. As I have said, Lu uses a version of the PODD on her Tobii. It is incredibly helpful as a visual language that she already knows, but I have been feeling that she needs a more advanced version of the PODD, like the paper version we had made for her in the spring.  The version she uses on her Tobii right now has 12 buttons per page, but she was using 20 per page in the paper version.  Unfortunately, there isn't a Tobii version of the PODD available as of now with 29 buttons per page. Dr. Sasha's speech therapist in New York said another mother is apparently working on this version, but she doesn't know when it will be done. I have decided to start working on the new version on my own instead of waiting for someone else. To get it done. And, that is why I have neglected my blog. Usually in the morning between Lucy's bottle of Pediasure and her breakfast I have a cup of coffee and that's when I can get a blog post in, but I have been using that time to work on the PODD. So, here is a condensed, pictorial synopsis of all of the amazing things Lu has done recently:

Lu has gotten her first chore. She pulls her dirty laundry behind her walker in a clothes basket that is velcroed to a scooter board. She is so proud to be doing an actual important job that helps out the household! And she gets practice walking!

Lu got two new fish, Little Bluie, and Scooby Dooby Doo!

Using her hand cuff, water colors, and masking tape, we made this beautiful painting of the letter E. (That's the letter of the week at preschool) Lu chose all of the colors using her Tobii. It was a lot of fun.

Also using her Tobii, Lu designed her first jack-o-lantern and she and her Daddy carved it. I have to add two pictures of this because they are so cute!

Lucy was Elmo for Halloween! We had a party in lieu of trick-or-treating

Lu had a ton of fun with her cousins and friends! It was a good time.

And the grand finale: several times this week Lu has said with her Tobii, "I have to pee" and then I take her to the potty and and she pees! And today at breakfast she said, "panties, me" so we sat on the potty and then [Lu] put panties on. The picture above is of Lucy coloring a Halloween picture, while wearing her panties which she didn't pee in and waited until I took her to the potty to pee, after about 45 minutes of wearing them! She was so proud of herself and of course we were so proud of her too, but the look on her face brought tears to my eyes. 

So, that's what we gave been up to. I apologize to our faithful readers for my slacking. I might not improve on it for a bit though, so bear with me.

Tuesday, October 8, 2013

The wide open air

Here is a beautiful picture Chad made for Lucy at my request:

It is a page from "Oh The Places You'll Go!" By Dr. Seuss. Chad has been getting more and more into art in the past couple of years so I asked him to make this picture for Lu to hang on her bedroom wall and he did an amazing job! Here's a little story about why I wanted this page in particular. 

This was the first book I read to Lucy and I started reading it in the first week we were home from the hospital after she was born. In that first week I was of course emotional as new moms tend to be with all of the hormonal upheaval, and then the added distress of Lucy not being able to nurse really had my tears standing at the ready for any little thing to set them off. The page before this page says:

"You'll look up and down streets, look'em over with care, and about some you will say, 'I do not choose to go there.' And you might not find any that you'll want to go down, and in that case of course, you'll head straight out of town." 

And then comes this page stating, "It's opener there, in the wide open air." (Sheesh, I'm tearing up as I write this!) As I read that to teeny, Utiny, less than a week old Lucy, I cried each time at the mere thought that my brand new baby, fresh from the oven, would leave me some day.  I simply could not bear it! But, as I read it to her, I also assured her that it most definitely is opener out there in the wide open air and I would not ever keep her from it.

Fast forward 21 months and we receive Lu's diagnosis. We had read that book to the point of near memorization, but after we received the diagnosis of Rett, I couldn't bear to even pick the book up, let alone read it to Lu.  After some months I tried, and I couldn't. I felt like the book had somehow betrayed me. I believed (at that time) that Lu was never going to get the opportunity to choose where she was going to go in life. I believed that she would never know how opener it was out there. That she would never experience the wide open air. So, I had gone from lamenting the day she would leave me, to despairing over her future of never getting to be free of me. 

 I'll tell you what I did...I sold that book on The moment it was sold, I instantly regretted it. I immediately felt like now I had betrayed Lu. So, I bought her a brand new copy and I wrote her a note in the front of it. I told her about all of these feelings of betrayal, but then I explained that I had bought her a fresh copy for the new dreams we would have for her. But more important than any dreams I have for her, are the dreams she will have for herself. 

So, I am writing this today because it was the first day that I didn't stay with Lucy at preschool, at all!  Her personal care aide fed her lunch and snack without me being there. I was terrified to leave her there. Not because she isn't surrounded by wonderful people, because she is, but because I do everything. I am the one who takes care of her the majority of the time. I suppose I'm a control-freak about her care and about being the one to do it. But...this is her first breath of the wide open air. If I wanted to be selfish and do everything the way I want to do it, I'd never send her to school or away from me at all.  But she likes it and she deserves the openness, just like everyone who wants it does. 
My big girl.

This kid's face

Look at this kid's face:

That giant smile is because of her Tobii. Here is the page I made for her that caused the smile:

Those are the movies we have that she can choose from and she chose to watch Despicable Me and was so happy. What a little thing, but sooooo huge. Choosing what movie Lu  would like to watch may not "technically" fall under the "medical necessity" umbrella, but I think it should in regard to how it makes her feel mentally and emotionally to make choices so easily and readily.  I made a page also with all of Lucy's classmates at preschool and she can look at the page and say hi to them. Also, that is a tiny thing that is actually huge for her. I've put some books on her Tobii too. Some I found that were already made for eye gaze, two so far I have made myself. Lu can now look at some books and turn the pages again...with her eyes! It has been almost a year since her hands quit being able to turn the pages of books, which used to be one of her favorite things to do. 

Luckily our primary insurance company covered all that needed to be covered in regard to the Tobii. The secondary insurance, Gateway Health, again denied it as not being medically necessary. Fortunately we don't need anything from them, but it is just sickening to me that they could say it is not medically necessary for a person to be able to independently communicate their wants and needs. Again I say, look at that kid's face! She is often smiling, but that smile is because she was able to tell me something; quickly, easily, and accurately. The Tobii is expensive, that's why it took so stinking long to get it here, but I know that Chad and I would pay any amount for the rest of our lives if we had to, to keep that smile on her face and to keep hearing what she has to say.