We have BIG news!
(Keep reading til the end!)

This is Ellie in one of her walkers.

Ellie has a gait trainer (beginner walker), and two walkers -  posterior and anterior.  
It's been a trial and error thing trying to figure out which one is best for her.
Our house sometimes looks like a medical supply store.  With pink decorated walkers.

The pink polka dot one (in video above) is good because the wheels swivel.  It's bad because she hates to use it.  That kind of attitude is hampering us.  (But it's typical for a two year old!)

It has safety restraints on it so it is the safest for her.  The problem is that she is two.  No two year old wants to be restrained.  And we don't want her to associate walking with restraint.
(Who knew there were so many factors to consider?!)

The purple one is the easiest for her to manipulate.  It rolls quickly.  It's also the easiest for me to take places so it is more convenient.
The wheels don't swivel.  So as long as she is walking straight it is great. 
If she needs to turn, it takes an adult moving it in position.
Also, there are no safety restraints and since Ellie is not yet able to balance (yet!) an adult has to be behind her ready to catch her when she falls.  If she leans back, she tends to fall.  She doesn't really have the reflexes to catch herself so falls are a definite risk.

Eventually, I don't think she will be as dependent on a walker the majority of the time.

Here's the trouble for my brain:
I can't figure out when it is age appropriate to make her use the walker in the community.
(Therapists call this "community access.")
For instance, a two year old wouldn't necessarily walk across the parking lot to the grocery store.  But they might walk the aisles of the store.  A two year old would definitely typically walk around a playground.  They would walk at church.  They would walk in their home and yard.
Here's where it gets tricky for me.
I want Ellie to participate in her world at an age appropriate level.  I also want to keep her safe.  I also want to allow her the "dignity of risk" - the chance to take risks.  
Ellie can use the walker at home - if an adult is behind her to catch her.  And if she is going straight.  And if there aren't any obstacles (couch, table, rug, etc)  The walkers are difficult on uneven terrain (grass, driveways, playgrounds, etc.)  Hills would be dangerous.  So as far as being able to access her community safely while walking, we aren't there yet.  And I'm in a bind - trying to give her independence yet not really able to yet (like at birthday parties - all the little kids are playing and running around... Ellie wants to too but needs my assistance.)  Any ideas from you mamas who have been there?  How do I help my daughter have age appropriate independence at parks or birthday parties or grandparents' homes when she is not yet mobile enough to independently keep up with her peers?

But here's the HUGE news:

Ellie took 2 steps today!!!
My sweet, precious girl - age 25 months - took her first steps!
My girl, with such limited range of motion and misplaced joints and weak muscles, stepped!
My child with arthrogryposis multiplex congenita is on her way to being a walker!

She is not yet walking (I believe 8 independent steps are considered "walking.")  
She is not yet able to stand independently.
She has not yet mastered sitting up independently.
We might be doing things in our own developmental milestone order around here.
I'll call it Ellie's timeline.

But in therapy today, I was about two feet from her therapist and I just let go and Ellie was essentially falling into the therapist as she is not yet able to stand up steadily but she kind of managed to take TWO STEPS while falling forward.
So we're calling it her FIRST STEPS.

My daughter, who some said would never walk, took steps.  My daughter, who is unable to get to a sit or a stand independently, took steps.  My daughter, who is a huge risks for falls laughs while taking those steps (& proceeding to crash in our laps.)

Someday, this girl is going to walk.
I don't know how or when.  I do know I'll video it and post!
I don't know what her endurance will look like. She may still need a walker for safety purposes on certain terrains.  She may someday need a power chair for endurance purposes. But she will also walk unassisted.
I'm sure of it.
Days like today give me such hope.

Also - this is probably the most awesome thing about parenting a child with differences - these seemingly normal milestones?
We watch our kids work their tails off, we pay a fortune for therapists, we buy equipment and we borrow what we can and we research and mostly we pray and beg and pray some more...
and then one day?
They accomplish something the rest of the world calls "typical."
We know it is anything but.
And we celebrate!
We don't take this for granted.
So so so thankful to God for the opportunity to experience life like this.
Exactly like this.

(It hasn't really sunk in yet for me.  I keep watching the video over and over on my phone and kissing on my girl.  I'm just so excited for her future!)

9 thoughts:

Mike and Christie said...

That is DEFINITELY WALKING!!! Praise the LORD! How exciting!

Kelly said...

Love her sweet little laugh and smile. She is proud of herself! So precious! Congrats Ellie!

My name is Annette said...

YAY ELLIE!!!!!!!!!!!!

Mama Bear said...

This. THIS RIGHT HERE, is why you needn't worry about the state of your house or your to-do list.

Congratulations! Continued blessings.

Mama Bear

Mrs. Jenk said...

I love seeing her do something the world says she can't! Isn't that what God is all about? Hooray for you believing and working hard with her!

Crystal said...

Okay, I am bawling! The excitement in your voice and the smile on her face! What a joyous moment and many more to come!

angela said...

Hi, my name is Angela & I don't know that I've ever seen your blog before (just followed a link from thislittlemiggy.com) - but YOU GO, GIRL. :>

My son will be 11 in a month and has a variety of developmental & neurological diagnoses. I can't even keep all the dr's straight anymore - but I vividly remember one who gave us a very bleak prognosis. I AM HAPPY TO SAY THAT DR WAS COMPLETELY WRONG ABOUT MY SON. :> He has done things I NEVER thought he would do - we have quit limiting his abilities in our minds, because who knows what he will do next? I loved your video, and I love your squeal of joy - I have made that sound myself. She will amaze you, I promise! Good luck & God bless -

Cheryl Linder said...


amaleesto said...

I just now saw this! So excited! I think about that girl all the time! I see another patient now who is 7 & she is riding a bicycle and getting around great! She's blonde and beautiful! I picture this being Ellie someday soon.

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