An Updated Video of Madi Walking in her HKFOs Using Arm Crutches

Madi told me that she wants to wear her "up ups" (aka hkfo's) and use her walking sticks to walk down the isle when she gets married (in about 20 years I say ;)).  I told her she better get to practicing!  She's been doing awesome and has been starting to balance so much better. She's now able to take a few steps on her own which is a huge accomplishment! Just a few months ago she couldn't balance, let alone take steps.  I think the therapeutic horseback riding is really helping her with her balance and core strength.  The doctors said she would never walk considering she is an L2 level.  One thing the doctors can't judge when they determine someone's level of lesion, however, is their level of determination; and that is what makes ALL the difference!  Some days she doesn't feel like walking, and I don't force her to, but mostly she really loves being up and mobile.  She's so very proud of herself too!  Here's a video of her and our new PT Kelly....

Our Spina Bifida Awareness this Month

For those of you who are my facebook friends, you may have noticed I've been posting daily pictures to facebook of my gals who rock spina bifida.  You  may have looked at my photos and said to yourself, "Why is she posting these?  There is nothing special about these photos!". 

And you are right!  That is the point!

Yes, my girls have spina bifida, and yes, sometimes life requires some creativity, but the point of my pictures is that most of our days probably look so much like "normal" lives.  We play, we get dirty, we learn, we eat, we go on vacation, we have little adventures, we swim, we bike ride, and the list goes on and on.  Sure, we do those "other" things like therapy and cathing, appointments and surgeries, and sure, the girls do many activities while zooming instead of walking, but the point is that they still do them.

Sometimes I feel that others focus on what we do differently, when the fact is, much of what we do is the same! 

Here are a few "boring" photos of us from this past year, just living our lives, because spina bifida doesn't mean life stops for us.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Kids Singing "Let it Go" from Frozen

The kiddos wanted to make a video of them singing "Let it Go" from the Frozen movie.  I think it perfectly sums up their personalities.  You have Conner, the adorable goofball who loves to have fun and be in the spotlight.  Next is Madi, my animated child who really gets in to everything she does and is quite passionate.  And lastly is Ramya, my fun-loving squirrel who is constantly on the move and  who has a personality that shines.  I sure love these kiddos; we have a lot of fun together!

 

 

Photos From Our Boston Trip

We had a lot of fun on our Boston trip.  Boston is not very wheelchair accessible, sadly, but the city is beautiful and, as always, we made it work without missing out.  It sure helps to be creative!  The people in Boston were also very friendly and helpful and helped us whenever they could.  We are also SO thankful for the opinion we got about Madi's surgery and are also looking forward to our upcoming third opinion with Dr. Shafron on Thursday. Please continue to pray for clarity for us!!  Without further-ado, here are some photos from our trip!

 

Off we go!

 

 

Boston Aquarium Fun

 

 

 

 

Clinic time! Yeah for second opinions!

 

 

 

 

Bus Tour!

 

 

 

 

Out on the Duck boat... the boats that run on land or water!

 

 

 

A harbor boat tour....

 

 

 

Some pretty pictures from down town...

 

 

 

 

 

 

A fun 3D movie.... Madagascar Lemurs, narrated by Morgan Freeman

 

 

 

 

A trip to the science museum....