Tag Archive | AFO

Progress

To say it’s been a while is an understatement – I’m not sure where to start!  The biggest thing that has happened was that Vivian started walking independently in January.  I don’t think she has stopped since!  It seemed to come out of the blue – her babysitter was playing with her, trying to get her to take a step to give her a hug.  Viv was having fun and didn’t realize that she was taking a step, then two, then three and so on to get to Becca.  Her motor planning came together and in typical “V T” (Vivian Time) she was walking on her own.  At just over 4 years old, the day so many of us have been waiting for happened.

I am a teleworker and happened to be on a conference call when she took her first steps.  When Becca came to my door and told me, I promptly excused myself from the call and proceeded to scream and cry and laugh and smile.  To this day I still tear up when I tell the story or even think about it.  I know I always will, as my daughter’s ability to walk is something I don’t and never will take for granted.

There is still much more work to do. She cannot walk up and down the steps independently, she has not yet mastered the art of standing (or sitting down) from the middle of a room.  Nonetheless, walking is her favorite thing to do, so she is getting lots of practice in!  Joy radiates as she walks, smiles and waves to everyone.  If you’re lucky, she may even blow you a kiss.

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Independence Day

Vivian certainly lived up to this holiday’s name today!  I made sure today was a mother/daughter day.  We played outside, went for a walk, ate breakfast and lunch together.  When it was time for Dave to come home from work, I wanted to (hopefully) surprise him.

Vivian does everything on her own time. If we try and force her to do something, most times she ends up resisting for longer out of fear. We have had this walker at the house for a few months now. We have gotten her to use it for very short walks around the house. Never would she walk without our hands over hers – just as she won’t when walking without the walker. We knew not to push her too much, but she was enjoying taking walks up and down our court, that I decided to try using the walker outside.

Sure enough she started walking, while I slowly moved my hands up her arms, then down to support her trunk. Once she was comfortable with that input, I then went to simply holding the back of the walker. This is the closest Vivian has ever come to walking independently! Little Miss did not want to head towards home, she wanted to keep going. A temper tantrum in a neighbor’s yard ensued, but luckily her daddy had just gotten home and was able to coax her to turn around. We finished our walk and went inside to cool down. We ended up going out again this evening – here is a video of her walking all on her own!

All I can say is I am so incredibly proud of her! I have been struggling, wondering what the next step will be in terms of her physical development. Now I have my answer and feel she is one step closer to physical independence!
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Happy 4th of July!

Feet

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These are baby girl’s feet.  Her ankles look like this because of the missing fibrillin.  In August 2011 we got her SMO’s (Supra-Malleolar Orthosis).  The orthopedic’s office custom-made them for her.  At that time, she was still belly crawling, so they were sufficient (she did start hands-and-knees crawling in September 2011).  If she did do any standing, they helped to support her legs by keeping her ankles straight.  These orthotics were made with room to grow.  When they were nearing the end of their usable life, we met with the orthopedic doctor again.  I went to that appointment with much anticipation.  I had a feeling what the next step was.

Vivian had shown interest in standing and assisted walking.  As far as balance went, she pretty much had none.  When the doctor recommended we get AFO’s (Ankle-Foot Orthosis), my heart sunk a little.  OK, maybe a lot.  The SMO’s went just over her ankles and were pretty much unnoticeable.  AFO’s look like this:

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The fact that something was wrong with my daughter would now be much more visible.

I knew I had to accept that these braces would help her, but nonetheless it was hard.  It still is.  Fortunately, she has made great improvements over the last few months.  Unfortunately, she is still not walking.  November 5 Vivian turns 3.