Our Christmas Chairs 2014

I realized I forgot to post pictures of the girl's wheelchair Christmas decorations.  Ooops!  And of course, for some reason, I can only find Madi's decoration photos right now.  I'll update with Ramya's chair when I find them.  Madi wanted angels flying around Santa, so this is what we came up with.  Of course battery-powered lights on the handle bars were also in order.  The girls really loved showing off the lights on their handlebars!

(it's hard to see but there are gold angels among the round colored balls)

New Videos of Madi Walking

I just realized I never updated any videos, nor had I started including Ramya's walking videos.  I will start posting those below this post.  Look for the posts at the bottom in red :)

I just thought I'd share a few new videos of Madi walking.  She got her new HKFOs not too long ago, and she's adjusting quite well.  She has less stability in them, but also more movement.  She is able to kick her legs out a lot better now.  She got her first pair of HKFOs at about 22 months, but outgrew those pretty quickly!

This video was taken last week.  You can tell when she started getting tired because she started jumping.  Jumping in her HKFOs is one of her favorite things to do, though! 



This video is from today.  You can tell she has a lot more energy.  Towards the end she starts getting bored of her walker and tired, so we switched her to her shopping cart (which is the last video), which she had fun with.  The goal is to keep her up standing and practicing, but not to the point she gets frustrated and doesn't want to be up.  We change up her activities pretty often to keep her happy and engaged.



... and with her cart...



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Here's a video of Madi walking at 6 years old, using HKFOs and arm cruches....

http://www.aworthyjourney.com/2015/04/an-updated-video-of-madi-walking-in-her.html


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Ramya walking with her HKFOs and walker at 8 years old...

http://www.aworthyjourney.com/2015/04/a-video-of-ramya-walking.html
 

Our Snow Adventure

My parents have a cabin in Flagstaff and we went there to go sledding over the 3 day weekend.  We had a BLAST!  Just thought I'd share some photos :).

(Yup, that's a giant snow ball in his mouth :))

She wanted to sled by herself, so I took her up just a couple feet and she sledded down !



Need Valentine's Day Gifts? Love Avon?

Carena is still giving 20% of her purchase towards our adoption!! If you need anything from Avon, she's your gal! Here's the info...


I will donate 20% of all sales toward bringing Ramya home. Please consider placing an order- even a small one, to help support this amazing family in their journey to bringing Ramya home. Thank you!

http://cstamps.avonrepresentative.com/online_event/view.php?rep_spnsr_evnt_id=217566


Click on "online events" and shop from there to benefit Ramyas adoption.

Need Valentine's Day Gifts? Love Avon?

Carena is still giving 20% of her purchase towards our adoption!! If you need anything from Avon, she's your gal! Here's the info...




I will donate 20% of all sales toward bringing Ramya home. Please consider placing an order- even a small one, to help support this amazing family in their journey to bringing Ramya home. Thank you!



http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.youravon.com%2Fcstamps&h=ZAQHL8K0fAQEIk0Jvg21si6kWRUOD1DDAJ9JNTHAyNNoQuA



Click on "online events" and shop from there to benefit Ramyas adoption.

Madi's New HKFOs (AKA Up-Ups)

Madi got her new HKFOs today and is SO SO excited!  Ron at Hanger re-did her design.  This one will take more strength, but will give her more mobility at the same time.  She can kick her legs so much better in them!  We took her old HKFOs and are took off the H (hip) part so that we try using them as her night-time knee immobilizers.... that's one way to reuse and recycle, right?!?!? :).  I'll get a video of Madi cruisin in her new up ups tomorrow for everyone to see them in action! 

Being great waiters!  The little girl on the right is Kaylynn, whom I watch 3 days a week.  Conner is so good with her and she is such a little sweetie!



YEAH!  Time to try them on!  (pardon the chocolate from her granola bar on her clothes ;))

Left... old; Right... new

My kiddos sure do love Ron!



A Very Merry Christmas

We had an amazing and blessed Christmas this year.  We were very lucky to be surrounded by friends and family that love us, and that we love.  Here's some photos from our special day!

Baking Gluten-Free Sugar Cookies

Spending time with our cousin, Micah

Aunt Angi and Cousin Lauren

Madi and her papa

Spending time with Cousin Nathan

Love this photo of the boys!!

Enjoying time with Grams and Granddad

Us being our typical selves

New fingerless gloves... perfect for zooming!

And some for Conner too, of course :)

Merry Christmas Ramya!  We love you and are preparing our home for you!!

Enjoying Christmas with Grammy and Papa

Our new Christmas gift.... yeah for Craigslist!  It is wheelchair-accessible

Another new gift... a sand and water table that has adjustable heights!



The Local Spina Bifida Association Christmas Party

We attended the local Spina Bifida Association Christmas party again this year and had a great time!  Madi ran in to a few of her friends, including Owen, who is one of her favorites!!  Santa was there again and the kids had fun sitting on his lap.

Madi and Owen

One thing the Rifton Mobile Stander is great for.... DANCING!



Madi and her buddy Tanner 

Thanks to the local chapter for such a fun day!

Our Spina Bifida Walk-N-Roll

First off, I want to say THANK YOU to everyone who donated and participated in our walk-and-roll for Spina Bifida.  I know Madi felt very special being surrounded by those those that love her.  Team Madi raised over $500 for the local chapter and we are so grateful for each and every one of you that donated!



Secondly, I want to say a bit about what I noticed at the walk.  Too often, I talk to moms who just found out their baby has spina bifida and they were told by their doctor that their child would have no quality of life.  It's absurd, absolutely absurd.  When I looked around at the walk-and-roll, I was taken back at all of the life I saw.  These kiddos were not just going through the motions.  They had a twinkle in their eye and they were genuinely happy.  They were full of smiles and laughs.  Their leg braces and wheelchairs didn't slow them down one bit.  They had a true love for life and they were inspiring to watch.  I am not saying spina bifida is always a walk in the park, nor am I saying that every person or child with spina bifida loves every little part of their life (who does!), but what I am saying is that these kiddos have an amazing spirit and love for life.  If you asked them, they would not tell you they had no quality of life, but instead, that they loved life!

We decided to deck out Madi's chair and it was a lot of fun!  I think we're going to make it a tradition and decorate it every season.  It sounds like a great tradition!

Here are some photos from the day...

From left to right: David (dad), Umpa (great-grandpa), Conner (brother), Uma (great-grandma), Madi (the little star) Papa (grandpa), Grams (grandma), Nathan (cousin), Jamie (mom), Kim (aunt), Grammy (grandma)

Taking a little break to run up the mountain

I did it!



This is own, Madi's friend.  They were showing off the rainbows on their arms.  Owen showed Madi how to pop wheelies at the last Spina Bifida Association party in December.

Madi's cousin, Nathan

Madi's great-grandma, Uma

Madi's buddy, Ezra

Dancing :)

It was a great day!!!