Ramya's New HKFOs

On Tuesday Ramya got her new HKFOs.  She was SO excited!  She picked a zebra print and really loves them.  Hopefully that will be good incentive to be up and standing in them!  Madi also got her HKFOs adjusted, so both girls have a great fit right now.

Ron adjusts our HKFOs for us while we wait, which is wonderful!  It does take a few hours, though, between our time in the room with him and him adjusting them, so we brought our school work and homeschooled on the road.  I love being able to do that when we need to!

On the way home we stopped at Urban Cookies and got gluten free, vegan donuts.  Well, Conner and Madi did, that is.  Ramya didn't want one and I try and avoid sweets.  That sure made the kids day!

Yeah for standing!

  

Playdough Fun!

I'm always trying to find fun things for the girls to do in their leg braces to encourage standing.  The kiddos were almost out of playdough and were wanting more, so we decided to get packets of kool-aid and make kool-aid playdough.  It's not edible, but it does smell really yummy, and it comes out with nice colors (except for the yellow... we could barely see that one).  My kids have never had kool-aid to drink, so they now think the purpose of kool-aid is to make playdough, and I'm totally ok with that :).  We used this recipe from http://www.the36thavenue.com/2013/03/kool-aid-playdough-recipe.html:

Author: Desiree Campbell

Recipe type: Playdough

Serves: 6

Ingredients

• 1 Cup Flour
• ¼ Cup Salt
• 1 Packet Kool-Aid
• ⅔ Cup Water *You will end up using between ½ and ⅔ cup.
• 1 Tb. Oil

 

Instructions

1. Mix the flour, the salt, and the Kool-Aid together.
2. Boil the water.
3. Add the oil to the water (we added our oil after we added water.  We started with 1/3 cup water, mixed, then added a tiny more water, mixed again, then kneaded when we got to the right amount of water, which was 1/3 plus 1/2 of 1/3).
4. Pour some of the water into the dry ingredients and mix with a spoon. Keep adding water and work the dough until the color is uniform and feels like playdough.

 

If you want to make this gluten-free, you should be able to just use white rice flour instead.  You could add a little xanathan gum too, to make sure it's the right consistancy. 

 

 

The kids had a lot of fun!

 

(well, you can't tell from Conner's face here, but he really had fun too, I promise!)

 

 

 

A Piece of Equipment We Love

I blogged a while ago about getting Madi a Rifton Dynamic Stander (mobile stander).  I haven't updated about it for a while and thought it was about time!  I really love Madi's stander.  I love that she can easily wear her HKFOs to use it and that it keeps her upright and weight-bearing.  Another thing I love about it is that it puts her at eye-level with the other kiddos her age.  She can maneuver it very easily and get where she wants to go.  Most importantly, Madi loves her stander as well!

I've talked in the past about trying to vary Madi's activities while she stands up.  Usually that is a mix of spending time using the walker, spending time in the learning tower, spending time holding my hands to walk, getting carried in her HKFOs, and spending some time in her Rifton mobile stander.  Madi is two, so she likes to keep busy.  Changing activities often keeps her happy and also keeps her upright, which is so very, very important for her.  It's important for her bone growth, muscles, bowels and bladder, circulation, and so much more!

The only thing that I wish I could change about the stander is I wish it had a removable handle. I'd prefer to take this out, instead of Madi's wheelchair, but it's hard to use in busy parking lots and places like that. Because of the design, I have to bend over to push Madi, and it is hard to safely maneuver Madi around without killing my back and while watching Conner. Madi is amazing at getting around in it without help, but I always push her in the parking lot to keep her safe (ask her how much she loves that ;). She always yells, "NO! I DO IT BY MYSELF!" and gets upset at me).  I have plans to try and get someone to rig a little handle for me, so I'm hoping I can work something out there.  Other than the lack of the handle, the stander is amazing!!!

We bought a little table that works great with Madi's mobile stander.  We got it at Costco and it was only $20 but it is adjustable to four heights.  It fits when she is standing in her HKFOs, when she is in her stander, and when she is in her wheelchair; it's great!  I love easy and simple solutions that are affordable! Here's a picture of Madi using it in her stander:

We eat at the table, do stamps, color, paint, make food, and so much more.  It gets a lot of love!  In fact, it has some paint and ink stains to prove it!

If you want to check out Rifton's stander, you can go to http://www.rifton.com/products/standing/.  They also have a blog you can read at http://www.rifton.com/adaptive-mobility-blog/. 

We found our stander on craigslist and were able to buy it because of the money we get through Madi's amazon associates account.  Anytime you purchase through Amazon and use Madi's link, we get money back that we use towards therapy equipment and other equipment that insurance won't cover.  THANK YOU to everyone who purchases through her link for us!!  You are such a blessing!  http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20 

We found it!!!!

Problem solved!  My friend Stacy works as an early interventionist locally.  She read my post about needing something similar to our Christmas tree box that would help Madi with walking and standing.  She knew of someone local that made a product called the First Toddle system.  It is a 5-in-1 system designed to work for babies on up to preschool age children (and even beyond that I'm told).  I e-mailed the company and the owner got back to me quickly.  We talked quite a bit and I decided to use Madi's amazon associates money and give it a try.  It works perfect!!  Today was the first day using it, but Madi really loves it!  In fact, she threw a huge two-year-old fit when it was time to get out.  The nice thing about this system is that it has 3 different height adjustments so it can grow with your child.  Madi fits perfectly right now on the lowest height setting.  I had been contemplating making one for Madi out of PVC pipe, but I loved that this one was pre-made and would grow with her.  I'm all about simple these days ;).  It is a tad shorter (length-wise) than I was wanting, but that's an easy fix.  Early in January, they are going to be adding an extension kit you can buy for a little over $20 that will make it longer.  The owner wasn't sure if using two extension kids would make the product to weak or not, so I think I will try extending it out by 1 first and seeing how that goes, then possibly trying 2 extension sets to see if it is durable enough.  Madi is barely over 20 pounds so she really does not apply too much weight to it.  The one improvement I would make to it would be the width.  The width fits madi perfectly right now and it also fits Conner, but at some point, she will outgrow it  It would be awesome if the width was adjustable just like the height is.  Overall, I'm really happy with it and I'm so glad Madi is too!  I haven't set up the hockey net yet, but Madi is loving the basketball hoop.  I love that it has a little table you can velcro right on top  It's really neat to be able to have Madi up standing and being able to do activities at the little table.  Even though it's small it is still big enough for playdough or coloring, snacks, etc....  I haven't tried the mat that comes with the set yet either, as I have been using a cushioned mat we got at a local consignment store, Hissyfits (LOVE their stuff!!)., but I'll give it a try tomorrow so I have feedback on that part of it too.Oh, and did I mention it is lead and BPA free?  Here is a link to the website (right now they have a 10% off promotion with free shipping):

http://www.firsttoddle.com/

And, yes, you can purchase it on Amazon.com.  Just make sure that you pick which color accessories you want, as you can get pink, blue, or a mixture.


I took a picture of Madi playing in it tonight but I used my camera on my phone which takes pretty crummy pictures.  I'll try to get a few better pictures tomorrow so that it's easier to see how it works.  I love that she once again loves standing and walking!!  Another big "thank you" also for everyone who uses Madi's link when they shop at Amazon.com.  The money we get from there allows us to get things for Madi that would normally be out-of-pocket expenses for us and those really add up fast!  We try to spend the money wisely and use it for things that help improve her quality of life.  It is such a blessing to have it there to spend when we find something special for our special little angel!  THANK YOU!