Moving Forward with a Smile.......

In the picture above, you might notice that Mallory is knock-kneed.  This misalignment of the knee is referred to as valgus alignment.  This picture is from October and over the last few months Mallory's left leg has gotten steadily more angulated.

She is scheduled to see an orthopaedic surgeon from Children's Mercy in June.  We started physical therapy this week to work on some strengthening and stretching.  The fact that Mallory's mobility is affected has been daunting to say the least.  It's going to be a difficult wait till June to find out what Mallory's options are.  What ever the outcome, I know that Mallory will face this hurdle just like she has all the others.....with a smile.

Wanna play?

We spent the day at the Frese Farm on Saturday.  It was a beautiful day for playing outside. 
Mallory ended up playing catch with her Aunt B.
It was so much fun to see Mallory actively participate in playing catch.

Work Station

Mallory has her very own computer desk.  She calls it "work".  She works on the computer there but I've also added some other activities for her to do as well.

Phone Addiction

Mallory has a love for phones. 

You've probably received a 6 a.m. (or maybe even a 4 a.m.) wake up call from her. 

She can easily maneuver a cell phone to make a phone call.  I've now been working with her on dialing on our land-line.  I've made a laminated phone number reference that she can use. 

Don't worry Brandy!  Your number is NOT on it.

Defining Moments.

11 years ago today, was Mallory's 1st surgery.

Little did we know that day that over the next 11 years, that our poor girl would endure surgery 9 more times ranging from ear tubes to open heart surgery.

As new parents, young parents, we were ignorant in those first days of the gravity of our situation. It was almost like a dream. Waiting for the moment when you awaken and everything is back to normal.

What we didn't realize was that our "normal" had been redefined.
God had a grand plan for us and for Mallory. Over the next year, our eyes would be widely opened to the joys and trials of raising a child with Smith-Magenis Syndrome. Our days were quickly filled with appointments. Doctors visits. Medications. Therapists. Lab. Xrays. Parent Educators. It was like we were on auto-pilot navigating each day around the new constant needs of our child.

In retrospect, I now realize that we did a lot amazing things for and with our daughter. She has made huge strides. Not a day goes by, that I don't remember where we were 11 years ago or reflect on the path that life has taken us or look forward to progress that we will continue to make.

Good News.

Todd and I had the opportunity to meet with a representative from Ambucs over the weekend.  Ambucs is the organization that awarded her the Amtryke that she received in November 2008.  With Mallory's recent growth spurt she has outgrown her bike.  We received an application from the representative to be completed and will hopefully be trading Mallory's bike in for a larger model before summer.

 Mallory was awarded her Amtryke at school in November 2008.

Words cannot explain the joy felt when seeing Mallory pedal her bike.

Early Morning Riser

Mallory is an early morning riser.  Some mornings as early as 3 a.m. 

Most mornings by 5 a.m.  Very rarely past 6:30 a.m.

We have read, researched, and tried a lot.  We've got it managed to where Mallory gets the most sleep, however getting her to sleep later in the morning is nearly impossible.

Now before you start to wonder......Mallory has a reverse Melatonin cycle. 

What puts us to sleep and keeps us there is the opposite for Mallory.

There are a lot of factors that effect her sleep and we attempt to anticipate them all.

She goes to bed at night with her room clean and orderly.  When she awakens, it's like a tornado went through her room.  She gets into everything that she possibly can.  We keep her room full of the minimum requirements.  It's a no fuss room.

She has just a few toys in her room and manages to get them out.  She usually pulls all the clothing out of her dresser.  Her armoirre stays locked at night (when i remember). If it's not locked, she will take all the clothes off her hangers.

The ideal thing would be to get up when Mallory does.  We've tried that.  It works for a little while, but wears on you.  Our solution, is to contain her in her room. 

I'm not a fan of closing the door completely.  I want to be able to peek in on her and be able to hear her. 
We had a friend cut her door in half.  We then placed a lock on the door.  This keeps her in her room until it's time to be up for the day.  She does have a TV and books that keep her busy.

Most mornings are manageable with this system. 

For more information on sleep in children with Smith Magenis Syndrome, check out http://www.prisms.org/