Ashley's Story

She will leave fingerprints all over your heart


Because you asked

Well, technically not everybody asked, but for those of you who did ask about the "gait trainer" and what it was I decided to answer you.

Please excuse our appearance today. I didn't plan on taking pictures when pulling that messy hair into a bun, but I did add the pink bow and in our opinion a pink bow ALWAYS helps. No matter how messy the hair is!

So this is Ash in her gait trainer. I guess you could also call it a walker of some sort. It had the word RIFTON on it and so I'm assuming that is the company who makes it. It doesn't belong to us. It actually belongs to our PT who has allowed Ash to "borrow" it for the last couple of years. Yep, I said years. Yep, we too thought she would be walking by now, but she's not yet and were not giving up on it. So its been a couple of years that we've been working in it off and on between illness' and such. Its really a neat piece of equipment. You can do all kinds of things with it. Like change the positions of all the supports, handles, seats(by the way the seat has been removed and she is standing without its support using only her legs:), straps, wheels etc. Its adaptable and just when I think we have adapted in all the ways possible Sue comes in and makes another adaptation and "POOF" it meets her needs. Thats why I love it so much.

So in the first picture you can see that she is wearing her glasses. Thats because she needs(or so she thinks she needs) to use her hands to hold on and thus can't remove them and toss them across the room. This is a perfect time to make her wear them. She is concentrating so hard on not falling that she forgets they are on. She looks happy enough, don't you think? Thats because I took these pictures before I made her start "walking". Then it got ugly, really fast. Not pretty pictures.

This next picture shows you a view from the back. I think it also shows you just how tiny her legs are. Very, very tiny. In all actuality Ash is a tiny person. Her arms, her legs, her hands, her feet are all very tiny. Her face? Not so tiny, but that is a side effect from the steroids she is on. I would LOVE to eliminate those nasty steroids from her life, but I don't see it happening in her near future. This whole rejection issue that rears its ugly head is keeping her on them and causing her face to be very, very large and not so tiny. Oh well.

I showed you this back view so you could see her safety net. The big green bar that goes across her bottom. She thinks she's needs this bar. When we switch everything around and put the bar in front with her facing the other direction then she refuses to stand up straight. Instead she bends at the waste while holding on to the handles. For now we have decided that having her full weight bearing on those feet and standing up straight is more important. Later on we will force her not use the bar as her "safety net". Once she gets better at standing up and becomes stronger.

As you can probably tell Ash is watching a program. This is what she gets to do while standing up. For two reasons. First it keeps her from screaming and distracts her attention away from what her legs are doing. Second, its a good way for me to keep track of how long she is standing up each day. On our good days she had been able to stand for two episodes of Blue in a row. On our not so good days she makes it through the first half of a Wonder Pets show. So anywhere from about 15 to 45 minutes consecutively. Then she sits for a little bit and we go again.

The shoes you see her wearing definitely would not be my choice for this outfit, but they work best for therapy. They are a high top leather shoe made by Strideright. I would never take her out of the house in this shoe. Just being honest. Ash only wears Keds. Occasionally a sandal. Most days her shoes only stay on until we get in the car and then once I'm driving off they come. Even when its cold. No shoes, no socks is her preference. I put them on each day and then end up keeping them in the diaper bag. Not sure how I got off on that tangent, but I guess it had something to with her standing therapy.

Well, I won't keep going. I think you get the picture. If you have anymore questions about how we get her to stand and walk and what equipment we are using feel free to ask. Tomorrow I'll tackle the whole communication topic and try and answer those questions too.

We still haven't' heard any kind of pathology report. I guess that's good news? If they don't call us they must not have anything to talk about. I hope that's what this delay means. Talk to you soon. Have a great day.


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