Sledding

Mallory's PE Class took advantage of the snowfall in December and the large hill next to the middle school and spent their time SLEDDING.  Mallory couldn't be convinced to sled however she thoroughly enjoyed watching her peers take multiple trips on their sleds down the hill.

The Twelve Days Of Christmas Special Needs

On the first day of Christmas,

the good Lord gave to me: a child with special needs.

On the second day of Christmas,

the good Lord gave to me: a heart full of love for my child with special needs.

On the third day of Christmas,

the good Lord gave to me: an ache in my heart and a heart full of love for my child with special needs.

On the fourth day of Christmas,

the good Lord gave to me: a tear in my eyes, an ache in my heart and a heart full of love for my child with special needs.

On the fifth day of Christmas,

the good Lord gave to me: an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the sixth day of Christmas,

the good Lord gave to me: a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the seventh day of Christmas,

the good Lord gave to me: a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the eighth day of Christmas,

the good Lord gave to me: supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the ninth day of Christmas,

the good Lord gave to me: remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in heart and my heart full of love for my child with a special needs.

On the tenth day of Christmas,

the good Lord gave to me: an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the eleventh day of Christmas,

the good Lord gave to me: a sense of pride and courage, an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the twelfth day of Christmas,

the good Lord said to me: Reach out and share your sense of pride and courage, your appreciation of small accomplishments, your remarkable doctors & therapists, your supportive friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with special needs.

So here it is.......  Mallory's knee after surgery.

Hip Hip Hooray! The cast came off today!

Our 3 week adventure with a cast is now over.
Whew!



I was concerned that the sound of the saw would scare Mallory.



It didn't take long and she was bored with the whole cast removal.



Her incision looked great!



We discovered that Mallory had indeed been tucking treasures away in her cast.



The dime left it's mark on her upper thigh.

Once the cast and dressings were off, Mallory headed off to x-ray for once last check.  Everything is looking great!

Hanging in there.

Mallory is doing great in her first week home since surgery.
We brought a walker home to help her with balance and she used it for one day.  She has mastered all the functions of living in our home with a cast magnificently.  Her disposition has been great.
Now we are counting down the days till the cast comes off.

What's a sibling to do?

Mallory is very lucky to have her brother and sister.  They have been great these last few weeks.  They did so well the day of surgery but have also managed well at home.  They have been helpful, kind, and compassionate.

Update.

Well after an 1 /12 hours in recovery, they moved Mallory to the Observation Wing.  The Hospital Ortho Wing was full so we were in a holding pattern till a bed opened up.  The staff on the observation wing were great, especially after spending 8 hours with them.  It was 8 p.m. before we were able to move to a regular hospital room.

Mallory got her wish- A YELLOW CAST.

We settled in to a routine of vitals checks, IV checks, and all the other care that's necessary after surgery.

A couple of visits from the Doctor.

Visits from Matthew and Hannah.  And the official first signings of the cast.

I am so proud of Matt and Hannah for handling this day so well.

Room Service x3.  Mallory loves to call the # and order food.

Watched TV with Matt & Hannah before they left for the night. 

Mallory is getting used to ambulating with a cast.  Her pain is being managed. 

Mallory did not sleep at all yesterday.  I was worried with her sleep disorder and behaviors that we would be in for a long night.  I was wrong.  After Todd, Matt, and Hannah headed home, Mallory settled to sleep pretty quickly.  She even slept through a lot of the nurse visits throught the night.  And for my girl who is awake most mornings before 5 a.m., well, she slept till 7 a.m.
*Happy Dance*
Sleeping in till 7 a.m. is pure bliss in our family.

The IV should come out this morning.  We are awaiting a boot for her cast and evaluation from Physical Therapy.
After all that's complete, we are outta here.  Homeward Bound.

Slight Delay.

Just spoke with the nurse in recovery.  They have been working on pain management with Mallory and she has also required some oxygen.  This is not a setback, she is still doing very well.  We should be able to see her in the next hour or so.

Surgery Complete.

Relief.  Praise.  Joy.  That's what I feel after visiting with Mallory's surgeon once surgery is complete.  I have now sat through this 10 times.  10 surgeries.  Too many for any person's lifetime.

Mallory's surgery took just a little over an hour.  It went as expected.   No complications.

Praise the Lord.

The Waiting Game.

Our wait was fairly short in the waiting room.
We managed to get back to the nurse check-in really quickly.
Then the wait began.

A flood of staff in and out of the exam room.
Vital Signs, Name Bands, and Endless Questions.
Mallory loved all the attention.
I did bring the laptop to keep her busy.
Thank God for Wi-Fi.

The nurse were all so kind.
Dr Olney was in and informed us of the days events.
Surgery should take about an hour.
We were tickled to learn that Mallory can get a cast in her favorite color-  YELLOW.

9:10 and she's off.  Skipping, smiling, and hi-fiving her way to the operating room.  That's my girl. :)

What was I thinking?

Mallory is scheduled for surgery today.  Last week when I spoke to the Nurse Practioner at the Orthopaedic Surgeon's Office, I was confident that we needed the earliest possible surgery time.  I mean, who would want to manage Mallory fasting through the morning let alone waiting all day on surgery.  CrAzY!  So, we set Mallory's surgery for the first of the day.   I quietly praised myself for my wise decision. 

Well this morning at 3:45 a.m., I found that my decision was not so wise.  What was I thinking?  Who in there right mind gets up at this time and drives to K.C.?  We managed to leave the house in decent time,  the drive wasn't all too bad, but I was tired. 

I'm pretty sure I saw a zebra just outside of Topeka.  I had to rub my eyes and refocus to make sure it was so.

A coffee and potty break and we continued on for our 7:30 arrival at the hospital. 

I had figured that Mallory would sleep the entire way to K.C.  I was wrong.  She jabbered about her surgery the whole way.  My ears were bleeding by the time we got to the hospital.

We met my parents at the hospital and now the wait begins.

The Special Mother

by Erma Bombeck

 Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"This one gets a daughter. The Patron saint will be Cecelia"
"This one gets twins. The Patron saint wil...l be Matthew"
"This one gets a son. The Patron saint.....give her Gerard. He's used to profanity"
Finally He passes a name to an angel and smiles. "Give her a disabled child".
The angel is curious. "Why this one God? She's so happy"
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"
The angel gasps - "Selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"
"And what about her Patron saint?" asks the angel, his pen poised in mid air.
God smiles "A mirror will suffice"

Guess who?

Guess who's going to Middle School!

We've spent the last two months debating on what was Mallory's best option for school next year.  I was hesitant and somewhat resistive to the idea of sending Mallory to Middle School.
But in the end after prayerful consideration and several meetings with trusted school staff, we came to the conclusion that Middle School would be best.

Needless to say, Mallory is thoroughly delighted with the choice.

It will be a reunion with several of her favorite classmates from her special education class room that have moved on up to the Middle School already.

Couldn't have said this any better.

http://www.psychologytoday.com/blog/shut-about-your-perfect-kid/201203/five-things-not-say-special-needs-parent

Modified Ride

Last summer, we had a major mishap with Mallory's trail-behind bike.  We wrecked.  It was awful!  She had went to reposition herself in the seat and turned the bike on it's side.
Lot's of road rash! OUCH. :(

Todd has spent a great deal of time modifying the trail-behind bike to make it safer for Mallory.

The seat now sits lower and is centered over the wheels.
He also removed the pedals and added foot rests.

Mallory loves it!
She begs to go for a ride every evening.

It's a good workout as well with pulling the extra 100 lbs.

A few more modifications are in the works.
Mallory wants the bike painted YELLOW.  Her favorite color.
We are also going to replace the velcro straps with a seatbelt.

We did it!

Mallory's school had their 2-mile Run/Walk/Roll today.
Mallory wanted me to partcipate with her while she rode her bike.
It's a fun event that is hyped around activity and wellness.
We completed 1.4 of the 2-mile route which I felt was quite the accomplishment.  I ran alongside Mallory most of the time.

Mallory got a kick out of squeezing the hand-brake every time we would hit a good stride. 
She thought it was funny.
I didn't.

Afterwards, Mallory enjoyed handing water out to all the participants. Especially to her buddy, Noah.

Horse Lessons.

Since the weather has warmed up, Jackie has started horse lessons again.  Mallory got to spend little time with the group and learn horse anatomy.

She has alot of fun participating.

She even wanted to be the teacher.

The best part was when Tonya would get Specks to jump.
The kids loved it.

Tonya even let Mallory jump in and lead Specks.

Back in the saddle........Again.

Sessions at Independence Farms are back in full swing but at a new location.  The riders get to be outdoors versus contained in a barn.  Weather will be a factor but this setting allows for so many possibilities.  It's exciting.

Testing the Limits.

Mallory had her Spring Program this evening.
She has been preparing hersef for this night for weeks.
Singing songs is something she loves to do.

The evening went well and Mallory eagerly participated however she was just a little bit ornery.  Mallory was intrigued with what her classmates were doing and had times where it was hard keeping her hands to herself. 

At times she would get distracted and try pulling the ties on the stage curtain.  Fortunately, she never did get the ties undone.

Great article!

http://www.huffingtonpost.com/ryan-marshall/life-with-sms_b_1413373.html

I came across this article today and thought it was worth sharing!

More Easter Goodness.

Mallory had more Easter fun over the weekend with the Walter-side of the family.  This time she got to hide and hunt Easter eggs!

We also colored Easter eggs and Mallory wanted to participate.  She actually did a great job of dipping her eggs and ended up coloring 3 of them.  I have noticed that the older she has gotten the more willing she is to try things.  In her younger years the sensory input of activities like this would have turned her off.

One more hurdle overcome in the world of Smith Magenis Syndrome.