Fracture Update (by Lindsay)

Ella's follow-up appointment with the orthopedic surgeon went really well.

He told us that what happened is called an "incomplete fracture" since there is no actual crack, the femur just bent a little.  Fractures and "bends" are a little more common for children with SMA, as their bones are not as dense due to limited weight bearing.

Anyway, she didn't need a cast and she was able to take the ace bandage wrap off!  She just needs to take it easy for the next 4 weeks.  The only way she can make the injury worse is to bang into the same knee again, so we keep reminding her to slow down in her power chair :)

Thank you all so much for your kind words and prayers for Ella!!

A Small Fracture (by Lindsay)

Today while we were enjoying the beautiful weather at a playground, Ella was driving her wheelchair (at full speed) and for a brief moment, took her eyes off of the path that she was traveling.

The result??

She ran knee first into a picnic bench.  Hard.

She was pretty hysterical and her knee immediately turned red, blue and purple, so we decided she should head to the ER for an x-ray.

It turns out she has a small bend to her femur, which technically counts as a fracture.  The doctors put an ace bandage around her leg until she follows up with a pediatric orthopedic doctor within the next week.

Poor Ella is miserable :(

She finally passed out from crying when we got home...but then woke up screaming about 20 minutes later and we're having a very difficult time calming her down :(

Please keep Ella in your prayers for comfort and fast healing, as we hope she doesn't have any regression due to this injury!

A Patch of Grass; A Patch of Dirt...(by Michael)

     Ella's look often falls into a gaze as she watches her siblings and the neighbor kids run, jump, and climb.  Her wheelchair sits silently in the grass waiting for her to push the joystick, bringing it to life.


     Without missing a beat she grabs hold of her controls and charges forward over the rough terrain.  Each bounce of the chair over the lawn gives her muscles practice at maintaining her posture and head position.  She joins the other kids in the only way she know how and begins laughing, playing, and "running" around.  

     I often wonder what goes through her mind as she watches people.

     We were at the playground just the other day.  After her 10 minute swing fix, she wanted to cruise the ramps.  There was a little girl slightly younger than Ella who was running up and down the ramp.  For what seemed like an eternity to me Ella simply sat there and stared at the girl.  Every time the girl turned her back to Ella and ran up the ramp I could see Ella's eyes track the little girl's legs, from waist to foot, her expression cold and stoic.  She seemed to "snap" out of it and took charge of her chair, racing up the ramp, often circling the little girl.

     Ella's awareness of what it means to have SMA continues to grow.  She knows no other way of life.  And despite being confined to a wheelchair, having limited mobility and strength in her arms and legs, she is a happy-go-lucky kid; enjoying what the world has to offer.  

     My awareness, of course, is reinforced every day of my life.  Watching her as she grows, as she socializes, as she sleeps, as she laughs, and as she cries has provided tremendous insight into life itself.  As I was pushing her on the adaptive swing in our yard I noticed that the ground underneath her swing is lush grass; vibrant and full of life.  The playground equipment next to her, a hanging bar and a traditional swing, hover above a patch of dirt with weeds trying to grow.  Each time Ava or Henry, or any neighborhood kid, scrape their feet along the ground to start or stop their swing, or use the ground as a landing pad of sorts, they wear down the life of that patch of dirt.

     It's odd to see, I must admit; underneath a swing set, as plain as day...a patch of grass; a patch of dirt. 

     It does, however, represent what our life is like at times.  While SMA can be riddled with heartache, frustration, confusion, despair, depression, and anxiety...it too, can hold beauty in its grasp.  The beauty of those afflicted with this disease lies in their infectious personalities, obvious intelligence, and perseverance...

...they are truly a patch of grass amongst a patch of dirt. 

Anorexia (by Lindsay)

I'm not sure where to begin, so I guess I'll just jump right in...

My eating disorder is back in full force.  I've been struggling for the past few months and I've lost quite a bit of weight, putting me in the "underweight" category of BMI (body mass index).

I'm starting to realize that the transition into the spring season is the most difficult time of year for me.  Everyone starts to play outside, enjoying the nice weather.  Most of my friends have children the same ages as Ava, Henry and Ella, and they're becoming more and more independent each year.  My friends can have play dates or go to the playground and socialize with the other moms, while the kids go off and play together.  On their own.

On their own.

Ella cannot play "on her own".  

It's hard for me to come to terms with the fact that Ella will never truly be able to function "on her own".  And ED (my Eating Disorder) is my coping mechanism.  

I know it's not healthy.  I know it's not smart.  But I'm at a point where I think I truly need ED in my life to function.  

But it has to change.

Over the past few weeks, I have been to a handful of specialists, trying to "fix" this disorder that I have. 

I've been to my dietician.  Two new therapists.  My primary care physician.  And today, my psychiatrist.  I've had tests done (EKG and blood work - both normal..."so far" I've been told).  But nothing has been helping.  I can't get away from the idea that ED helps me.

But my appointment with my psychiatrist today really hit me with a dose of reality.  She's giving me three weeks.  She told me that if I can't turn things around and gain some weight, then I'll have to go back to the Eating Disorder Program at Linden Oaks Hospital.  

Wow.

I really can't believe it's gotten to that point.  

So I have to change.  I HAVE TO. 

But it's so complicated.  Right now, I feel like no matter what, I'm a failure.  If I gain weight, then I've failed ED, my only coping mechanism.  But if I lose weight, then I've failed my family.  Naturally, my mom asked me, "Which is more important?  ED or your family?"

It's obvious.  I have to change.

For Michael.  For my babies.  For my family.  For my friends.

I will.  And I have three weeks to prove it.