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Do you shop at Amazon.com or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps! http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

Friday, December 27, 2013

Hand Powered Power Wheels for the Girls

This year for Christmas I was really wanting to get the girls a power wheels car (double one) to share.  I looked up how to modify it to hand controls, and my dad felt that it was something he could do.  I started looking in November on Craigslist and didn't find anything for sale (by the time I'd e-mail on it, it was already sold).  Black Friday rolled around and I saw a generic one on sale at Walmart.  My brother loves to shop after Thanksgiving, and was going to Walmart anyway, so he picked one up for each girl.  It was cheaper to get two generic ones on sale than it was one non-generic double power wheels.  These technically fit two, but are smaller than power wheels, so we opted for one for each girl so they would last longer. 

The girls LOVE their cars and are having SO much fun in them!  I am praying they hold up, because they are generic and not made as well as power wheels, but I know they will love them while they last!

A big thanks to each of you who shop through our Amazon link and make purchases like this possible.  Though sometimes our purchases may be "extra" things that the girls don't have to have, it makes such a big difference with their quality of life to be able to enjoy "extra" things that bring them joy. 

A big thanks to my older brother, Tony, who went shopping for us and braved Walmart to find these for the girls.  You are awesome!

And a huge thinks to my dad, and his friend who is an elevator electrician and helped him, for modifying the cars for the girls.  We could not have done this without you and the girls are so proud of their papa for making it happen!

Without further ado, here are their cars!

 







And a picture of the push-button my dad used (look on the left-hand side of the steering wheel.... and I think the WM stands for "Walmart" :))...

 
 
A few pictures of the happy girls on Christmas morning...
 



 
 
Here a few pictures with my cute little guy too...
 
 
(This year's stockings were a new pair of PJs and a snack to watch during a family Christmas movie.  I think this is a new tradition for us.)





 


 

My Christmas Cuties

Last year I bought these shirts for the kiddos (bought from Sweet Stuff Creations), because I was SO excited about Ramya coming home for Christmas and I wanted to celebrate.  When she didn't get to come home, I was so sad, but put them away and prayed they would fit this year.  Thankfully they do, and the kids love them!  Aren't they just the cutest?!!?!?









 

Thursday, December 26, 2013

Our Fieldtrip to Cerreta's Chocolate Factory

I've been wanting to take the kiddos to the local chocolate factory, Cerreta's Chocolate Factory, for a free tour and chocolate tasting.  We are taking a break from homeschooling for the holidays, and it seemed like the perfect time to go!  We went with another family that also homeschools and goes to Church with us.  We had a lot of fun!  
 
 
This happens to be the creepiest chocolate I have EVER seen!



 
We've been working on getting Madi out in her mobile stander more, so she happily used her Rifton Dynamic Stander for the tour.  She is outgrowing it, though, so we are praying we can get insurance to cover a new one.  We bought this one used, out of pocket, for $500, but they are $3,000 new!!

 
Conner is holding a 10 pound chocolate bar... yum!



Our Spina Bifida Association Christmas Party Fun

Every year we go to the Spina Bifida Association of Arizona's Christmas party and the kids have so much fun!  It's really neat to get to see the same kiddos and families (and new ones too!!) and make those connections with other families.  We really appreciate our local association and all that they do! 

Ramya got to meet Santa for the first time, and was so very excited.  Our kiddos know that mom and dad give them presents, and that Santa is just for fun, but that didn't lessen the excitement for her.  She had a blast!

Here are some pictures from the party...

 
 







 
 
We can't wait for next year's party!
 

Our Christmas Wheelchair Decorations

A few weeks back I decorated the girl's wheelchairs with the decorations they picked from Michaels.  They were a bit tricky to put together, but we made it work!  They LOVED their new decorations, and their smiles and cheers made it all worth while!  Here is the final product...

Here is Ramya's chair.  She picked all purple, of course :).  The lights are battery operated and really light up, which she thinks is amazing!

 
 
(someone gave Ramya this keychain so we added it for fun :))
 
 
 
 
 
Madi picked mostly green decorations, but when it came time to pick her ribbon, she just had to have pink reindeer.  It didn't really match too well, but she loves it, and that is what counts!
 


 
 
 


 

Friday, December 20, 2013

So Many Recitals! Dance and Band and Church, Oh My!

We have been busy, busy, busy!  I have a lot to catch up on blogging about, but some of it will have to wait :).  In the mean time, here are some cute videos of the kiddos in their recent recitals.  The last few videos aren't really recitals, but Madi will put on a show whenever she gets a chance ;).



First off, here is Madi, dancing her heart out in dance class.  She sure loves dancing!  She uses her HKFOs and Rifton Dynamic Stander (mobile stander) to keep her standing tall with her friends.  She loves it and we are so proud of her!

 





Next up is Conner's performance at Branches Homeschool Co-Op, the homeschool co-op we go to on Thursdays.  He had so much fun and was so proud of himself.  We are really proud of him too!  The band also played at a local assisted living home, which Conner really loved, as did those that they performed for. 

He decided that next he wants to play keyboard, and I happen to know what he is getting for Christmas, so I think his dream will come true ;)

 





This is a little performance the kiddos did at Church a few weeks back.  The kiddos had a lot of fun, especially the girls.  Madi and Ramya both talk about wanting to dance on a big stage (like my niece... we go to her dance performances at high school a few times a year)... and they got their wish!






Here are a few cute little videos of Madi jamming on her new little Barbie guitar.  My mom got it for her for her birthday, and she loves it!  She is such a ham.  The first video is of her playing while she's standing in her HKFOs and Learning Tower.  The second video is of her jamming out after she got some fun colored hair, thanks to the hair chalk my birth mom, Deana, sent the kiddos.  She said she had rock star hair, and decided to make up a rock star song to match. 

 


 

A Quick GI and Orthopedic Surgeon Update

Ramya saw Dr. Silber, her GI doctor, a few weeks back.  Though she is still not even close to being on the growth charts, she has gained a little weight and is following her own little curve.  YEAH!!!  I am not worried about her being on the charts, I was just worried about her lack of weight gain at all, and am so thankful to see she is gaining on her own little curve.  She is officially up to 32 pounds (at 6 1/2 years old)!  This is great news!  Dr. Silber is pleased with her growth and

On Thursday, Ramya saw Dr. Segal, our orthopedic surgeon.  He is very pleased with how the muscles in her core and legs are developing.  He thinks if we continue to work with her and help her get stronger, she should be walking with AFOs (instead of her KAFOs) within a years time or so. 

We are still working on getting her to use her legs for walking.  She wants to do it all with her arms, and not use her leg muscles at all.  We are also working on balance and core strength.  It is slow progress but she is really coming a lot way!  She has a very deeply ingrained fear of being dropped, which makes the walking thing a bit harder, but we take it a day at a time.  Her trust is growing and her muscles get stronger and stronger every day.  Right now I focus more on standing and sitting exercises with her, instead of walking, but I know once those care muscles are built up, the walking will come right along.  I am very proud of how far she has come! 

Here are some updated photos of my beautiful girl.  I can't believe she's almost been home a year now.  It's such a blessing to get to be her momma!