Tuesday, September 28, 2010

The Reason Why

Some may wonder why I do not update on Aviana very much. The lack of updates is because this process follows a familiar pattern.....

Work your tail off.

Wake, and do the same exact thing over and over again.

Receive very, very small rewards.

This has been a difficult lesson for me to learn. In so many cases, when you work your butt off, you reap great benefits.

For most of the month, I feel good, upbeat, optimistic, hopeful, happy and such, but for a very small window....I feel like nothing is enough, or will ever be enough!!

So, what has Aviana accomplished lately?

Her eating by mouth has been somewhat sporadic. Sometimes she does extremely well, but other times she doesn't at all.   I feed her 1 full meal and 2 snacks per day, by mouth.

Her awareness has improved greatly.  She seems to be constantly paying attention to everything around her. She is more interested in her friends, and all of her surroundings.

When we pick her up, she puts her arms around us.

She is starting to pay more attention to Kama again.

She would not pattern one day, so Dave told her, "ok, if you don't feel like patterning, you have to crawl on the floor." He put her down, and to our great amazement, she was moving in semi-circles and then back again. She then moved backwards for about 5 feet.  She was more bound and determined than I had ever seen before.

This went on forever, as she did not want to stop. We finally picked her up, because we feared she was getting so tired, she might drop her beautiful face hard onto the floor.

She is crawling down the full 9 feet of inclined floor, and is doing far better than she ever has.

The other day she was on the couch, and I went and got her stuffed elephant.  I was holding it up to her, and asking her if she wanted it, to my surprise, she slowly opened her right arm so I could put it against her.

In the past two weeks, she has decided to exercise her powers as a pint sized four year old. She has more attitude than ever. It is so nice to see, but is sometimes very difficult for therapy.  She even pouted a few times when having to do something she didn't want.

Her attitude toward me almost caused me to drop kick her out the window yesterday.  That feeling hasn't appeared since prior to the accident.

She is also making more and more sounds. When we ask her a question, sometimes she will make a noise like she is responding. We can tell she wants to talk, but just can't.

She is extremely healthy, and her weight continues to decrease. Can you believe she was all the way up to 43 pounds at one point?? She is now down to 34.4. We are still on our way to her fighting weight of 32.2.

She has a choice board that we use at least 10 times a day. We have YES and NO divided on a piece of paper and ask her questions. We hold her hand up, and she guides it down to her answer. I used to be a skeptic on this, but after the Institute pushed me to continue, I now see how much it really works. She loves making her choices be known.

I asked her if she wanted to try her costume on, and she said YES. I put it on her, and went in the back to the full length mirror. I stood her up, but her head was down. I said, "Aviana, if you want to see your costume, you have to lift your head." It was hard work, but she did it!

Aviana was sitting on my lap with her head down and facing away from the hallway.  Dave came home from work and when she heard his voice, she lifted her head and turned it around toward him.

We do an exercise called patterning, which requires three people, plus Aviana.  Now, if one of us happen to make a mistake, Avi will call us out on it. In a BIG way. She screams and cries out. She is clearly very angry.

Michelle says she pushes the buttons on one of her toys to make it go.

Our new nurse, Lesya, left her with her toy necklace around her, and when she came back, Aviana had somehow taken it off.

There you have it, Aviana in a nutshell.


  1. I don't even know what to say....Oh My God - how AMAZING!! I love reading about Avi's progress. I can't imagine how hard you work day in and day out. I loved every bit of your post! Thanks so much for sharing with us Jen!!

  2. Sounds like she's doing great!! And yippee for wanting to try on her costume :)

  3. That is AMAZING Jen....really....I know it seems small but it really is MIRACULOUS!

  4. words can not describe my feelings...

    the pride you must feel swelling in your heart when you look at all that your little angel has accomplished.

    you can see it in her eyes...she is TOBY KEITH TUFF .....GARY ALLAN DETERMINED .....and DEFINITELY with out a doubt a true BOMBSHEL!!!!!!

    AVI......FIGHT LIKE A GIRL!!!! we are all behind you 100% ...every step of the way!!!!

    <3 ~j

  5. Wow! Great update! You guys are really doing it! She is going to keep impressing everyone as the days go on. I love that she can communicate with you and give you some feedback. What a wonderful feeling, to be able to make that connection. AMAZING!!!!

  6. Oh WOWZA!! What amazing updates on Aviana!! just amazing. We continue to think of her so often!! Loved the new pictures..She is changing so much before our very eyes! The progress is so eveident..Your hard work is shining bright!! Thanks so much for sharing it with her FANS!

  7. That is so incredible what she is doing. What an amazing little girl you have! Such a fighter. And, what an incredible Mommy you are. You're doing an amazing job with her. Keep it up.

  8. Another Avi fan who is sooo happy to read of her awesome progress! I love keeping up w/ your blog, no matter what you write about... but it's extra special to get an update like this one! You all are in our thoughts and prayers... every single day! Go Aviana, go!!

  9. WOW sounds amazing! to us reading her changes are so great because we dont' see her everyday and we don't see little things here and there that, what we see is every few months how much she truely has changed. I think of your life like the movie "Ground Hogs Day" every day over and over and over. Its not fair, but obviousley life isn't.
    Loved reading the updates of Avi having sleepovers with friends, I've sure just some changing faces around have to brighten and change her day.

  10. Wow!!! She is doing awesome....all because of the dedication and hard work that you all put put forth day in and day out! She is one lucky girl to have 2 incredible parents that care so much and are willing to do whatever it takes, because of that she is reaping the benefits. I don't comment often but just know that I check your blog often and you are always in my thoughts and prayers. And thank you for always taking the time to keep us all updated it makes my day to check the blog and see how far she has come. Take care!

  11. Go Avi!!! Reading this fills my heart with joy. What a strong little girl! Can't wait to see you again. Give her a big hug for us! :)

  12. If your days and weeks are filled with these victories, no matter how small they feel in the moment, then WOW!! It makes me weep to think how far your little champion has come! Add all of this together and it just sounds like HUGE steps forward. Wow. Double wow! Go Avi!!! Rocky had nothing on you, sweet girl! (Not to mention your coaching team - amazing people, every one of you!)

  13. I love these updates. What a little fighter, such a spirit in that girl of yours. She is in my prayers -- and you, too, Mama. You're doing such a great job :)

  14. I love these updates! We've all been praying for Aviana and your entire family! Looking forward to finally meeting you all in November at our concert :)


  15. Wow, those are some awesome, measureable positive changes. Yes, remember when they said terrible two's regardng attitude? Well, I gotta say,It is challenging and different every year of their lives. Multiply that with Aviana's enormous challenges. Woah.
    I am so impressed and yep, the waterworks started when I read about her lifting her own head to look at herself in her Halloween Costume. That's right Aviana, you got it in you girl! You can do it!
    Did you use the yes and no board to ask her if she likes her costume? Or if she wants to wear it every day -mine has for 3 days straight. She is dressed as Neytri from Avatar. It's got a kitty tail and is all blue.
    Strength and Prayers to you!!!