Garfield School Fun Run

Mallory's schoool has a 2-mile fun run twice each year.  Mallory really wanted to participate but we knew that walking the route would be very challenging.  We got permission from the school to let Mallory ride her Amtryke instead.  I was able to sneak away from work to see the start of the race.  The excitement of it all was contagious.  Mallory is towards the end of the video clip.  She got a little upset in the beginning, but then took off biking the route.

Visit to Hildebrand Farms.

This fall, we took a road trip up to Hildebrand Farms so that Mallory, Matthew, and Hannah could see what life was like on the dairy.  We had a lot of fun on the tour and the kids enjoyed making butter.  We always joke around that there is not a place within an hour radius of Abilene that Mallory is not recognized.  Sure enough, Hildebrand Farms was no different. One of the teachers at Mallory's school works part time at the dairy and eagerly greeted Mallory with a hug.

Spread the word.

Meet Dakota.

Mallory recently switched to a different horse at Independence Farms.  Her new rides name is Dakota and she loves him.  She is so eager to ride him each week.  And the best part?   He trots.  How cool is that? It's such a shame that winter break is coming and we will have to wait till spring to ride again.

Doctor's Visit

We finally made it to the Children's Hospital for Mallory's appointment.

Mallory checked herself in at the Registration Desk.

She waited patiently in the waiting room.

She grabbed on to a set of exam gloves as soon as we walked into the exam room. 

Listened to her Ipod.

Our visit with Dr. Elias and Dr. Munro went well.
It's always encouraging to talk with specialists that "get" Smith Magenis Syndrome.

Joe's Crab Shack

We had the opportunity to meet my Aunt Arlene for lunch before Mallory's doctor's appointment. 

My mom had not eaten at Joe's Crab Shack
before so that was our choice.

Mallory really enjoyed her time with her Great-Aunt.

The hostess at Joe's Crab Shack let Mallory
work for a little while.

Mallory even came away with an awesome shirt.

Dinosaur Ridge

Near Red Rock Amphitheatre, there  is a mountain side exhibit called Dinosaur Ridge.

It is the most impressive Dinosaur exhibits that I have seen.

Red Rock Amphitheatre

Before Mallory's appointment, we went and toured Red Rocks Amphitheatre.  The Zac Brown Band was packing up after having concerts the previous two nights.

Visiting LoDo.

When we made it to Denver, it was cloudy, rainy, dreary.
You could barely see the foothills, let alone any mountains.
We ended up heading into Downtown Denver (LoDo).

There is a lot of quirky, cool artwork.

Mallory with a painted bull.

Mallory playing on one of the many painted pianos.

Posing with a herd of bison.

We were disappointed that we missed out on a mountain view.
(I mean, geesh, who drives 6+ hours to Colorado and doesn't want to see mountains?)
But on the brighter side, we did have a lot of fun in LoDo.

Quick Stop in Limon.

Colorado Trip- 1st Stop

Our first stop on our way to Colorado was the Cathedral of the Plains in Victoria.  It is visible from the Interstate and such an impressive sight.

We made time to stop and take a look inside and out.

Colorado Bound.

My mom and I are headed to Colorado tomorrow morning with Mallory for her 6 month check up at the Children's Hospital.

Maxton's Birthday Party

We celebrated Maxton's 4th Birthday today.
We were blessed that Mallory did so well.
She enjoyed being around all of the family and friends.
She loved the food.
She went crazy over the pinata.
It was a very enjoyable time.

Mallory reaching high for the pinata.

She grabbed ahold of a corner of the pinata to use as a hat.

Not that she likes candy, but she went ahead and stashed some to take home.  To share with her brother and sister that is. :)

Hanging with Dad.

Mallory really wanted to go to work with her Dad this morning.
She thought that if she went ahead and loaded up in his truck that he just might take her.

Highlights and Lowpoints.

This week has gone somewhat better with settling into a school routine.  We have had some challenges though.

I'm looking forward to our trip to Children's Hospital next month. 

I think that Mallory may need some adjustments with her meds.  Again.

Today, we missed the bus. 

Really it was just 10 minutes early. 

But, Mallory wasn't ready. 

She still had shoes to get on and glasses to find.

I sent the bus driver on her way and told Mallory that I would take her to school.  She was pretty excited. 

She skipped her way in to the lunch line, gave me a big thumbs-up and said "Bye Mama!"

I thought to myself "This is going so well.", that is until I went to leave.

Meltdown.  Drama. Chaos.

Guess it's time to work on a better plan for drop off.

On the brighter side, we were working on the house last night.  Painting trim.

I had folded laundry earlier that day.  Mallory took it upon herself to take everyone's laundry and place it in their bedrooms.  Without being told.  What an accomplishment!

In the news.

Mallory made the Salina Journal on Monday, August 22nd.

Done right.

Hannah came home from school today and she was upset. A friend of Hannah's said some not so nice things to a little girl with special needs at school.  Hannah stood up for this little girl, even though she didn't even know her name. She talked to me for quite some time about this incident.  She was mostly upset that her friend would say these things.. She said "That would be like somebody picking on my sister and I don't like it."  I take pride in knowing that Mallory's siblings take pride in her and want to protect, but am amazed at the fact that they carry that on to other children with special needs.  Deep down it tells me that we have done something right.   

Are they ready?

Last month, I took Mallory to the orthopaedic surgeon to have her left leg evaluated.  The angulation was getting worse and was very concerning.  I had no clue of what to expect of the visit but went in expecting the worst.

After looking at her xrays and reviewing the recent history of her leg problem, the surgeon is confident that this is a growth plate issue.  Mallory will have surgery on Monday.  The surgery will be quick however the process of healing and straightening her leg will take months.  She will not have a cast or crutches and will be able to walk that same day. 

We are very excited that something can be done to help Mallory's leg.  She is very excited to go to the hospital and to be doted on by all the doctors and nurses.  But the real questions to ponder is-  "Are they ready for Mallory?"

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.