Progress & A Video

Lizzie is making really great progress mentally - the physical side not so much, but she's finally starting to push herself a little bit.

Lizzie went to school all by herself today and rode the bus. I must admit I just threw out the idea of her riding the bus just to see what she would say, never thinking she actually would say she wanted to, but she did! I sat there at the bus stop with tears streaming down because a) I was nervous for her and b) I was so excited she was taking this step.

Lizzie's energy levels are still pretty low, but I feel like she's slowly able to do more and be awake more - I love it. Our Lizzie is coming back. Her personality is shining and she is silly and crazy and becoming more and more like herself every day.

We are still working on curtailing her potty talk that she so rampantly used in the hospital. We came to an agreement today that she can only use potty talk when she's talking about her tumor. So today she went off about how her tumor was a butt-butt, stink-butt, poo poo head. I had to wholeheartedly agree with her - it is a poo poo head!

A piece of good news - Lizzie is stable on her meds and so she no longer has to get her blood drawn twice a week - this is a huge blessing since needles are not her best friends these days - we are so grateful for this!

In physical therapy Lizzie is really reluctant to try new things or push herself, but this week she is doing a little more than before. She is frustrating her therapists though because they want her to do things to get her body better, but she just breaks down crying if she thinks something is too hard...that is where the prize box comes in handy.

For those of you that visited us in the hospital you know what an obscene amount of gifts she received - I'm not kidding, it was 3 Christmases worth of gifts! She played with a lot of them in the hospital, but for those that she didn't play with, they are now in the prize box. Everytime she gets her blood drawn or works hard in therapy or achieves another milestone, she gets a prize. It is fun because we get to talk about who gave her what and how nice everyone is - it has been a really great thing, so thank you again to those who gave gifts - it is awesome.

The biggest thing we're dealing with and that we'll continue to deal with is the hypothalamic obesity issues. Lizzie continues to gain weight even though we are closely monitoring her caloric intake. She is still hungry all the time, but she seems to have accepted this more and doesn't cry about food as much as she did before. There are many doctors who are doing lots of experimental things to help these brain-injured kids that deal with these issues so we're looking at the possibility of medications and other options. I just wish everyone was nonjudgmental...I wish I was too. I am learning so much that you just can never judge anyone by appearance or behavior because you just don't know someone's history.

Enough of that, things really are good - we are feeling more and more normal and Lizzie is a miracle girl.

I came across this video tonight and it just reminded me of Lizzie. It is by Collin Raye. His granddaughter Haley died last month due to a neurological disorder she had and was improperly diagnosed. I can't figure out how to put it right on my blog (techno challenged), but if you have four minutes, take this link and watch the video...it is so beautiful.

http://www.youtube.com/watch?v=oj6GXVTAOiU