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!!!

Join Team Madi!

Next Satuday is our local Walk-N-Roll for spina bifida!  Our goal is to have 10 people walking with us and to raise $500.  We are at 5 people walking and $285.00, so we are over half way there!  Please join us!

http://www.sbaazwalknroll.org/faf/r.asp?t=4&i=484149&u=484149-332052133&e=4765266894

A Few "Up Ups" and AFO Adjustments

This evening Madi had an appointment with Ron at Hanger.  Have I said how much Madi LOVES Ron (and, of course, I do too because he always takes amazing care of my little gal)?  She was not happy about getting in the car, but when I told her we were going to see Ron to get her up ups fixed, oh boy did her face light up. Then she yelled, "YEAH, RON!  LETS GO SEE HIM!" as loud as she could.  This is really a big blessing because normally a mention of the doctor gets the opposite reaction. 

(coloring on the paper examination table cover to keep Madi happy while her up ups got fixed)

Ron made Madi's up ups a little wider in the booty.  He also made them a little taller and moved the shin pads up so they would help keep her knees from popping out.  He added a pad to her AFOs so her heel does not pop out at night when she's wearing it.  Next he gave us a knee immobilizer so we can keep Madi's left leg (her tight leg that was casted to treat her clubbed foot and also had a heel cord lengthening) stretched out.  This will keep her leg straight at night, since she usually curls it in, and help keep her from getting tight in that leg.

Before we left, Madi had to show off her walking skills and, of course, it wasn't good enough that I hold her hands.  She insisted that Ron helped her.

Ron is walking in the local spina bifida association walk-n-roll, so we will get to see him again soon.  Madi will be excited!

Just to prove that Madi is a typical life-loving two year old (only possibly a little more mischievous), you can see what Madi did today.  I walked in to the family room and found that Madi had gotten in to my makeup bag. 

Yup, she spilled my charcoal grey powdered eye shadow and my blush.  It's hard to get mad, though, when you look at her and she is grinning from ear to ear looking like this...

I see makeup application lessons in our (very distant) future!  If you haven't already, please join Team Madi for the upcoming walk-n-roll.  Here's a link to join.  We hope to see you there!