Tag: family

ARTHROGRYPOSIS ADAPTATIONS – PLAYGROUND PART 2

Last week we began a lifelong journey. Our girl, home three months, had her first evaluation in the United States to begin a specialized treatment plan for her arthrogryposis.  We visited the Shriner’s Hospital closest to our home, about 2 1/2 hours away.  Shriner’s is a leading expert on orthopedic conditions , and specifically treat children from birth to age 18.  We had heard great things about them preceding our visit, and all were justified.  This place is amazing!

It was wonderful to sit down and talk with doctors who are familiar with this condition.  Because it is fairly rare, many doctors have never treated someone who has arthrogryposis.  They knew just what questions to ask, what x-rays to take.  They taught us what to keep an eye out for, and what to stop worrying about.

Generally speaking, all of the experts were in agreement.  Our daughter is amazing.  Through her six years, she has developed many techniques that work best for her own body.  She has adapted beautifully.  Considering she had essentially NO treatment for the first 5 years of her life (typically babies born with AMC will begin casting and intervention just a few weeks after birth), and the fact that she has been walking for less than a year, they were quite pleased with her range of motion and muscle strength.

There were a few surprises too, however.  It appears {K} has a slight bit of curve in her upper spine, the start of scoliosis perhaps.  The pediatric orthopedist mentioned that nearly 25% of arthrogryposis patients will develop scoliosis over time, simply because of the way their bodies compensate for alignment differences.  It is possible that this curve developed for {K} before she had her hip surgeries, and perhaps now that her hips are in alignment her spine will remain stable.  We are following a wait and see approach.

She was able to pick a toy for being so patient during X-rays.  It was no surprise that she chose something Hello Kitty related – girl loves her some Hello Kitty!  The puzzle was a great distraction for her while waiting.  Win-win!

The specialists also noted that her left wrist may merit some intervention.  It is currently mostly locked in a downward position, but she has amazing grip with that hand.  They feel that by unlocking that wrist she would have an easier time with self care tasks, such as dressing and grooming.    They sent us home with a hand brace/splint that they recommended she wear at night and for short periods during the day, to help stretch the wrist ligaments.  On our next visit, six months from now, we will meet with a hand specialist who will talk us through some options for the future.

{K} was fitted for some new AFOs (ankle foot orthotics) since her feet are growing and her toes are creeping over the edge of her old set.  She was pumped that they let her pick out her own color and pattern for the new set, and chose a butterfly option.  We will go back in a few weeks, once they are made, to try them on and do a final fitting before bringing them home.

Most of all we are just so, so happy that {K} will be able to start school this Fall with no limitations and no surgeries on the horizon.  A chance to be just like all the other little kids in her kindergarten class. The ability to have fun and play at recess, just like everyone else.  She has already mastered the ladder/slide combo!

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Again with the amazing grip – am I right?!?  The hanging on the bar before going down the slide?  All her idea.  This girl will move mountains!

THE HOUSE THAT GRANDPA BUILT

We spent our holiday weekend in North Dakota, visiting my side of the family.  It was so wonderful to see everyone. Our visits seem to be few and far between now that my sisters and I each have families of our own and we cherish the moments we are able to spend together, no matter how short.

One of the days we traveled a couple hours further north to visit my grandma, my dad’s mom.  As a child, we would get together nearly every 4th of July with my dad’s side of the family.  Such sweet memories were made at my grandparents home and even now, visiting as an adult, the house brings a big smile to my face.

The house was designed and built per my grandpa’s specifications.  He was a teacher by trade, but took on home building during the summer months as a way to keep busy and supplement the family income.  The house he built for his family (and the one my grandma decorated) was a trend-setter for sure, completely stylish for it’s time.   Just take a look at some of the key features and how they are inspiring the design of our cottage.

OUTDOOR SPACE

My sisters and I, along with our cousins, spent many hours outside in the ‘sunken patio’ space in front of the house, creating mud pies. Grandma loves flowers and each year plants petunias in the raised planters that serve as a half wall for the patio, offering privacy.  I loved this little patio space and definitely want to incorporate a patio at our own house.

LIVING ROOM

Growing up, my grandparent’s house was the only one I knew that had a vaulted ceiling.  It sits much the same today as it did when it was first built, save the carpet which was changed from red to orange sometime in the 70s. There is something electric about this living room.  Sure, it’s decor is a bit zany; But the fireplace wall, the amount of seating, the vault, the built in shelves and the natural light that pours in all combine in a way that promotes conversation and comfort.  For our future house, we have decided that the one room in the house that should be large and well detailed is the living room.  It will occupy nearly half of the square footage of the entire main floor, have a vaulted ceiling and a fireplace focal point.  There will be plenty of windows offering daylight, and seating all around.  Thanks for the inspiration grandpa & grandma!

GALLERY WALL

Look in any home decor magazine today and you will see plenty examples of gallery walls.  They are the perfect way to display family pictures and mementos.  They personalize a home and make a bold statement.  My grandma tested out this technique years before it was popular.  She asked my grandpa to cover one entire wall in cork so that she could easily display photos, and the results are stunning.  I still find myself looking carefully at each detail on this wall every time I visit the house.  We have our own gallery wall now at the farmhouse we are renting, and will definitely be incorporating another at the cottage.

My grandma still lives in the house that grandpa built for their family; And although the bedrooms are not always occupied and that cheerfully decorated living room is typically quiet, I am certain that when she looks around she feels happiness living in a home that was built with love.

ORCHESTRA DAY ONE

In high school I desperately wanted to learn to play the violin.  My family lived in a small town that offered band classes to students, but not orchestra.  I saved a bit of each paycheck I earned in the hopes that one day I would be able to buy one and teach myself at home; But as time went on and my schedule became more demanding, the dream went by the wayside.  It wasn’t until college when I met an amazing man and shared with him all of the desires of my heart that it resurfaced once again; And in early 2001 this man proposed marriage to me in a creative way, with the use of a violin.  We married and used it as a prop for our wedding photos.  It is a beautiful symbol of love. Whenever I look at it I am reminded that I have a husband who wishes to make all my dreams come true, and I believe that with him by my side I can reach them.

In 2006, upon finding out that we were expecting our first child, we came to the realization that if  I didn’t start learning the instrument soon I may lose my chance for many years.  And so with great anticipation, I began violin lessons at a local music center when I was about 2 months pregnant with {D} and continued with them until a few weeks before his arrival.

We like to joke that because he had a front row seat to each of my lessons and subsequent daily practices, {D} retained some musical knowledge, but we know the truth.  His love for music comes from within his soul – a God given gift.  It’s a beautiful thing.

Today the proverbial torch is being passed from mother to son.  {D} walked into his very first orchestra lesson and took a baby step in learning to play the violin.  We are so incredibly excited to watch his skills develop and I look forward to the day when we can play duets together.