Putting out a wanted list :)

After talking with Tami, Madi's physical therapist, we decided Madi would really benefit from a mobile stander.  It would allow her to be upright and at the same height as other children her age, but would still give her great mobility.  Her HKFO's are wonderful for weight-bearing and walking, and the mobile stander would not replace what the HKFO does.  We  would still want her to use her HKFOs as much as she can/wants to, but a mobile stander would be good for her when she's not in her HKFO's (she is currently in them a few hours every day).  Right now she crawls, goes in her HKFO's, and uses her wheelchair throughout the day.  The mobile stander would probably be more something we use at home, then her wheelchair when we go out.  It is like a wheelchair but it helps hold the child upright so that they still get good circulation and their muscles stay nice and stretched.  Being upright does wonders for the bowels and bladder too!  The bad news, though, is that insurance will not cover HKFO's and a mobile stander.  I am going to contact the local Spina Bifida association and see if they have one in Madi's size that we can borrow, but I figured I'd throw it out here too.  If anyone has a mobile stander their child has outgrown in Madi's size (she is two and needs a mini or a small) and they are wanting to sell it, please let me know!  We are officially on the lookout!

Here is what a mobile stander looks like:

Here is a link to a mobile stander that Tami recommends:

http://www.rifton.com/products/mobility/dynamicstanders/index.html

And here is what they say about the standers:

Stronger bonds. Stronger bodies.

Eye to eye, smile to smile – engaging with peers is so much more rewarding for children with special needs when they can interact in an upright and mobile position. And the Dynamic Rifton Stander makes it easy – even for kids with no weight-bearing ability.
The Dynamic Stander gives children who would otherwise be wheelchair-bound greater independence and mobility. Even more important, this mobile wheeled stander helps strengthen critical motor skills so a child can progress toward independent standing.


Freedom to explore


With the Dynamic Stander’s removable large wheels in place, children can self-propel in a standing position – free to explore their surroundings alongside their playmates.


Freedom to participate
Pop off its removable large wheels, and the Dynamic Pediatric Stander easily rolls right up to a table or a counter for participation in crafts and other stationary activities

 
If anyone knows of a place that loans out mobile standers, other than the spina bifida association, please let me know! 

Who knew a Christmas tree box would do all this?

It has been really hard to get Madi to want to practice walking.  She was struggling with it and was giving up, not really trying because it was hard.  She just could not quite figure it out.  I think part of the problem was that she was still trying to shuffle, like she did in her stander.  We'd been practicing on and off, but not as much as we should have been, as I didn't want to push her.  Yesterday I decided to put her chair out of sight and just tell her it was time to work on walking.  She and I practiced quite a bit, and then she asked to get in the Christmas tree box.  Conner had been playing in it and she wanted a turn.  I put her in and noticed that she had an easier time with walking.  She was taking a few steps on her own, without any help/support.  It's kind of crazy too because I had been fighting and fighting to not get a fake tree.  Finally I gave in this year and we bought one from Michaels.  Who would have guessed that God would have a plan for that silly box?  I called Tami, her physical therapist, and told her about it so she could see her walk in it during her session today (I had to help in Conner's class so my mom was going to be here with her for therapy).  Tami worked with her again today in it and I came home to this....

I had been down the last few days because I felt like I was failing at helping her walk and I did not know what else to try.  Who would have known God would give us such a simple answer!  I am so very proud of my little girl.  It is like the light bulb finally went off for her, and now she understands how to move her body to make walking work.  She is such a smart little cookie!  Now we are faced with the task of trying to figure out how to make her something like the box out of PVC pipe, wood, hand railing, or something of the sort so that she can use it to practice once this box falls apart (which it is quickly doing).  With my dad's help, though, we'll figure it out.  Way to go Madi!

There She Goes!

This video is from today.  Sorry, again, for the terrible quality.  I really need to empty my video camera so I can take good videos!!  Tami, Madi's physical therapist, was behind her helping her move her shift her weight.  Madi is catching on quickly!  She'll be up and running in no time!

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

Standing, here we come!!

Today was an appointment I am VERY excited about! Madi wants to be standing and upright so badly, but she just cannot make her little body do it. Because she does not have any movement below the hips, she is unable to support herself. Today we went in to get fitted for a parapodium, which is a device that will help her hold her body upright so that she can stand. She will also be able to move around with it. She won't be given a walker yet, since that would limit her ability to twist her body from side to side, but will be given a walking-stick type of device instead. Tami, her physical therapist, will work with me and teach me how to help her get around in it. Ron, from Hanger, is hand-making her parapodium for her. Don't ask me what it's going to cost because I don't even want to know ;). Tami and Ron talked so that he would know just how to design it. Unfortunately, it is not something Hanger normally makes, so he will have to order some supplies and we will not have the stander until right around Christmas time. I am so excited for her to finally get to be at her peer's level, though, and it is well worth the wait!!!. Watch out world, here comes Madi!!!

P.S. In case you are wondering about the photos... the first one is the mold they made of Madi's torso. I couldn't take a picture while they made it because I was helping to hold her and keep her happy. The second photo is of her getting measurements done.