Wednesday, September 19, 2012

Yea! photos

So i finally figured out how to download my phone photos to my computer these ones are slightly better. I wanted to post what her feet now look like so I hope these are sufficient.
just another sleeping picture of her odd positions and you can see her feet also are straightening out.
                                       semi curved not nearly as bad when she was born.
                                               how can you not think these are adorable!!
          Good picture of her nicely rounded head......8 months of a helmet for this!!!! So worth it!!!
 This picture is just cute she loved the windows down in the car blowing her hair around.

picture of her innovation of crawling...they call this a bear crawl she's getting better at it but its a precursor to standing on her own.

Tuesday, September 18, 2012

more recent photos

here are her new-er braces and the shoes I have mentioned before. They aren't very girlie but the serve the purpose to help stand and walk. The bottoms are very wide to add stability and the braces support her ankles.
Early Intervention loaned us this walker which she absolutely hates for unknown reasons. She can't figure out how to make it work but she did learn how to push backwards but that still wasn't enough for her.
It an odd photo but she is in the middle and I want you to see how flexible not having muscles can make you. She has her sock in her mouth. She is about 20 mo. old in this photo.
If you can see a better shot at her braces and shoes brand new!!!

having muscular dystrophy has advantages of being small. She is one years old and fits in a little toy wagon. Grandma had to much fun with her and they both loved it.
                                A cute picture of her first crawling. She in a tube obviously.
This is the picture that goes with the story of her first standing. She stood like this for about 10 or so seconds but she was leaning on the couch. This day was the first day we witnessed her optionally weight bearing. I did have to hold her belly up a little or she would've fallen right down.
Early Intervention loaned us this stander. She tolerated it quite well. She had to be strapped in and strap her little bottom in. She used to stand with her butt sticking out and her knees bent so this contraption helped her stand straight and forced her to weight bear. They say they don't like the sensation of bearing weight so this helps to desensitize that uncomfortable feeling and they can get used to it. It worked!!! If you can get access to one of these do it!!
I took this picture yesterday. She is with her cousin in a car seat just being normal. She is pretending to talk on the phone. She has her cute little braces and shoes on.
This was taken just this last august she is pretending to ride the 4-wheeler. She has all the strength to lean forward and hold herself up. She mostly acts just like a normal little girl.


the braces are a life saver I will try to post more current photos of her and her feet but they're all on my phone. These pictures were all stolen off of my facebook page. Drew n Michelle Crenshaw. The pictures are all open to the public if you want to browse more. She's got a great support group which is important and just praise for all that she does keeps her going. Her feet are straightening out with the help of the braces and the shoes and the standing. I keep telling her hers are normal and all of ours are not. They are now adorable to me. She is a little over 2 years and will closely fit a size 4 shoe in toddlers/infant. With the help of her braces and the weight bearing her feet are now starting to grow. She went from a size three to a 4 in about 6 months which I hear is slow but I think its pretty good considering she was in newborns at 6 months and size 2 for almost a year.

Super Duper progress!!!

Ah Dallas.... what can't I say about how amazing she is. In the last few months we've been watching some sign language videos to pick up the necessities for communicating. She know about all the words I know I could rattle them off but I know that I would forget a lot. She knows about 25-30 different signs but will only use just a few a day. Her favorites are please, thank you, your welcome, milk, blanket, help, and more which now actually means more. She makes her own variations of the signs and we've learned what she means with certain signs, it's definitely a second language. It's so hard to see her signing something repeatedly over and over and us not know what she means and then her scream in frustration and start signing again and again and cry because we just can't figure out what she wants even pointing sometimes will result in that. We've called in a speech therapist that is helping with us and went to a few classes to find that everything we are doing is everything we were supposed to be doing and just to be patient and the verbal language will eventually come......and it is!!!

She says and signs mom and dad, papa and grandma. She recognizes all those people and knows us all finally. We taught her ca-ca the other day and she'll say that while pinching her nose. She now tries to mimic words when we ask her to most of the time. I think that she knows what sounds she can say and can't and if the word is too complex for her she'll just laugh as in saying "your crazy expecting me to say that!!" We'll go on walks in her "ca" which is just short for car. She has a cute little red push along car that we'll take on walks. She would sleep and live all day long in that car if we let her. She wants to go on walks constantly she can even sign walk...her own variation at least. So when we go on walks we'll ask her to point to the flowers and trees and grass which she has down pat. Just today she said the word flower when she used to just say flow without the er. She'll say moo and tries to quack while moving her hands like a ducks mouth. She'll whisper the ff's in ruff and she'll say ba-ba when i pick up my keys, leaving somewhere or when going to bed as a replacement for bye-bye.

Her movement is every progressing. She is amazing when she puts her mind to it she is determined. She stands quite well now and pulls up on things to a standing position and will stand for quite a while as long as she is holding on to something. The longest she has ever free stood is about 10 seconds and then realized what she was doing and fell down. I think that she still feels unstable and is scared. She is not confident in herself enough to fully progress. We've been using her braces and shoes over her braces every single day all day so that she can build her confidence. The shoes have a really wide base to better stable her. They're "keeping pace" brand and I believe they're made to go over the braces because they are made to fit wider they've ugly as sin but they're a godsend. She's finally now decided that walking is the way to go and decided that she wants to try it. She has started to cruise which is walking side to side while holding on to something like furniture and going from one furniture or object to the next. She's getting better at it but is still quite unstable and I can tell she'll second guess herself and feels more comfortable crawling. She's really quite good at crawling and sometimes she'll just book it somewhere surprising everyone how fast she can move. Her latest crawling has turned to a yoga upside down dog facing position and then crawling like that. If she does that enough she'll learn to stand on her own hopefully. She can walk quite far weight bearing while holding on to someones hands for balance. Her balance is really bad she's very wobbly but at least she's weight bearing and taking steps left then right. Its so funny to see pictures from just a month or two ago and how much thicker her legs are getting. If its fat or muscles its good to see her gaining something. Our hopes are to have her walking by Christmas but her occupational therapist said that her back muscles need to strengthen for that to happen so we're trying by crawling and balance exercises but she can only handle so much....her determination and confidence will get her there! Maybe not by Christmas but that's our goal.