Priceless.

We were blessed with a wonderful gift a few months ago.  A lady I've known just short of 2 years, gave Mallory an IPod Touch this spring.  She has listened to me vent, curse, and praise the raising of a child with special needs. She knows my struggles and Mallory's.  She knew what a blessing this would be.

She gets Smith Magenis Syndrome.

Mallorys struggles with a short attention span.  She gets impatient.  Waiting is hard.  She also cannot tolerate the focus of someone's attention being shifted away from her.  Especially when it gets diverted to mom.

This made doctor's visits unbearable.
Attending a program or sporting event was impossible.
It made a lot of things stressful for Mallory and our family.

The IPod touch for example:

1. Kept Mallory's attention for 15 minutes so that I could talk with the orthopaedic surgeon about her problems with her left leg.
2. Has allowed me to watch each and every one of Matthew and Hannah's ball games this summer. 
3. It has made the long waits in waiting rooms for appointments enjoyable.
4. When Mallory had her speech eval at Children's Mercy it was a lifesaver.  It allowed for me to talk with the speech therapist and really discuss Mallory's care.
5. It even helps around the house, I can work outside with Mallory seated in a chair with her IPod touch.

It currently has music on it and some of her favorite movies. It is wonderful for her sensory issues.  She moves back and forth through songs only listening to the first 10 seconds or so of each. She scrolls back and forth through movies.  It would drive most of us crazy, but it is soothing to her mind and gives her the feedback she needs.

That way I don't miss moments like this.

Or this.

Thank you B.  We are so grateful!

Must Read.

First Feelings. 
I love this post by a fellow blogger.  Her words were my feelings in those first months of dealing with Smith Magenis Syndrome.  They were dark, lonely days.  I have learned however that those days get brighter, and that there is hope.

I want these mornings back.

We were in a pretty good place with Mallory's sleep. 

She was sleeping in till 6 a.m.  She was rested.

With the ending of school, our nice sleep scheduled has disappeared.
Mallory has been back to waking up between 3 and 4 a.m.  She is restless, naughty, and out of sorts.
It's not a good place for her to be.
We usually go through this every summer for 2-3 weeks till she gets adjusted.

Since Mallory has not been rested. Neither have we. 
I want the mornings back.  The ones where I would have to wake Mallory up.  The ones where she was almost hung over on sleep. As rough as the mornings are now, I know that better ones will come.  They have to.

Block Party.

Mallory and I worked at the Block Party for our church, LifeHouse.  This was a first time event and rain taunted us that morning.  I was nervous at how well Mallory would respond to the task.  She stepped up and worked endlessly.  Our job was to sell LifeHouse bags for $1.  She loved this job.  She spent 3 hours greeting people and collecting money.  We were suppose to finish selling before the start of the outdoor service but Mallory was having so much fun we continued to sell till lunch.  The Block Party was a wonderful time for our whole family.  Matthew and Hannah loved the games and activities.  There was pancakes served before the service and hotdogs for lunch afterwards.  The outdoor service was refreshing and a nice change of pace. 

To view the promo video for the Block Party, click below- trust me it's worth your time.