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.

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.

New Beginnings

She is about 20 months old now and has advanced sooo much in her abilities. It was in about January of 2012 that she first actually started to move. She was in a seated position and would move in a cartwheel like movement. We like to refer to it as "twirling". I've been told that a lot of babies that aren't quite strong upper bodywise will usually scoot on their bottoms but she found this way instead all by herself which turns out to be pretty convenient and clever. She still doesn't say any words the only thing that she does say and it sound pretty close is " hi dad". She still doesn't say her "m's" much so "mom" is almost non-existant. I'm not sure she even recognizes that I am referred to as mom.

As of April 2012 she had made much more progress......Early march we saw a spine specialist at Shriner's hospital in Utah. She has a curvature in her back that resembles kyphosis. Her OT was concerned and urged me to see a specialist to take a look at it. He said that the normal curvature is about 50% in the upper back whereas her is 60%. He said that her lower back which resembles lordosis is just compensating for the curves of her upper back. I told her OT this and she was thinking, hoping that if she strengthen her upper back muscles that it could maybe help the curves to either straighten or slow the progression. The specialist said we don't need to worry too much but that we need to bring her in every 10-12 months to keep track of how she is doing......Back to her OT, she said the only way she could think of strengthening her back muscles would be to spend more time in the four point position or to crawl. The was an amazing day. We spent just about a whole hour playing with blocks on her hands and knees and coaxing her in to getting down on her hands and knees, if she squealed we would let her get back on to her bottom. Apparently praise it was is really her ticker. She loves to be praised. When she would voluntarily get on her hands and knees and play we would just make such a big deal out of it. That is how she knows that "oh this is a good thing, this is what I should be doing". I even got her in that position and she tried to get away and ended up crawling away from me!! I was in pure shock that she did that. Now that I knew she could I pushed her and pushed her to crawl. We still make a huge deal out of it when she just spontaneously comes in the room crawling. I can tell that it is helping out tremendously with her strength. She is such an amazing girl. Just praise and praise her and she'll do anything.

Just this night I was so excited. She was playing around the couch trying to get up. I usually have to show her to steps to stand up. I put one of her knees in a 90 degree angle and she'll push on that leg to a standing position. Eventually she wanted to move from standing to crawling up on the couch. I showed her to put a knee up on the couch and she could pull herself up, of course I had to do a lot of boosting because she just doesn't have all the strength yet to pull up. Just now I saw her pull herself up into a standing position all by herself and she had one knee up on the couch. She started to whine for me to help her up the rest of the way! I was soo impressed!!! I can't possibly imagine what it next she tends to keep me guessing. We've been trying to teach her a little bit of sign language so that she can better communicate. Lately she's got the pointing thing down she points to everything. If she wants a drink or something I'm eating she'll point. She'll point at the dogs and I'll recite their names etc. The other night she held her empty sippy cup out to me and I signed the action for "more". Out of the blue we've tried this many times before she mimicked me. She obviously doesn't know what this means so I filled up her cup and gave it to her and she refused it, so I brushed her teeth and put her to bed. Every so often when she is being fussy and just not getting through to me she'll do the sign for "more". I thought it was her cup or her blanket. This night she had both her cup and blanket in front of her and she was fussing and signing it again. So i'm thinking that it means she wants to go to bed. I figure its not the right sign but at least she is communicating that she is tired and wants to go to bed.

Such an amazing little girl I am so truly impressed I love living each day to see what comes next in our little adventure together. There aren't a lot of things better than seeing your hard work pay off. What takes normal kids days to learn it'll take her weeks if not months. My 20 mo. old daughter is starting to break out of her infancy.