Friday, September 20, 2013

DS Clinic

Wednesday night, Josiah went to bed at 6:30.  The 'big' boys were in bed at 7.  We had succeeded in getting them to bed early.  C and I were in bed by 10pm.  We knew morning would come quickly.  We were right.

The alarm went off at 3am.  I continued to hit 'snooze' until 3:36am.  I couldn't delay this any longer.  I was up, showered, and dressed by 4am.  At 4:10, we were waking the three children up.  Our goal was to leave at 5am.  After feeding and dressing the kids, we were only a few minutes late.  At 5:17, we were out the door, filling up the gas tank, and headed for the highway.  Josiah had his Down syndrome clinic on Thursday.  If we don't leave early, traffic can be a nightmare.

At 6:30am, we had made the 30mile drive.  We were parked in the garage, one block from Children's.  We made our way up to the hospital.  The morning had gone smoothly, so far.  The big boys played on the musical stairs, then we were off to have breakfast.  After eating, we decided to roam around a bit.  We checked out a few of the important places C and the boys may want to spend time, while waiting for Josiah and I.

By 7:45am, we were checked in at the DS clinic.  We were about 45 minutes early.  The first of many checks started.  First, height and weight.  Josiah weighed in at 27 lbs.  He is 33.5" long.  Ha!!!!

By 8:30, Josiah and I headed in to meet with the Director of the DS clinic.  C and big boys were off to the playground.  Josiah and I sat with the MD until almost 10am.  Growth was charted.  Once upon a time, Josiah's plotted numbers wouldn't land on the growth target.  Once upon a time, weight was a huge concern.  Once upon a time, they said he was failure to thrive.  Once upon a time....  This day, however, was a different story.  On the 'normal' growth chart (which Josiah used fall in the 0 percentile), he proved them all wrong.  For weight, 56%.  Height, 29%.  Height to weight ratio, 79%.  On the DS chart, he falls in the 90%.  That's right, 90%!!!!

Medical history was reviewed.  His thyroid from January looked good.  He doesn't need to be rechecked until January.  Josiah will need a sleep study by the age of 4 as sleep apnea is common in children with DS.  Coincidentally, Josiah's tonsils are large - so this is something they will monitor.  If all stays the same, Josiah will get a sleep study near his fourth birthday.  No other concerns at this time.  Yay!!!

We then met with the physical therapist (PT).  That was Josiah's favorite part of the morning.  He was able to get on the floor and play on the huge mat.  He had a blast!!!  The PT was impressed with what Josiah is doing.  Josiah will continue to get PT through early intervention (EI).  Hopefully, walking will be in his near future :)

The meeting with nutrition went well.  Josiah is eating well and tolerating a variety of textures and flavors.  We are fortunate.  Josiah is doing great!  The meeting with occupational therapy (OT) went equally as well.  Josiah is making huge strides.  The OT was thrilled with Josiah's progress thus far.

Upcoming appointments/follow ups were reviewed.  During the Fall/Early winter months, we'll revisit orthopedics, ENT, and vision.  Dental will continue to be followed locally.  Flu shots are this weekend.  I was given the option of adding audiology to the day's events.  I opted to follow up locally.  I will try to get that scheduled for next week.  That is that!

It was 12:30 and we had had a great day at clinic.  It was fun seeing friends old and new.  We will see them all again in the Spring.  

We left knowing how lucky we are.  We have three beautiful, happy, boys.  We revel in the beautiful moments.  We take nothing for granted.  Life is good!!! 

A Switch in Therapies

Sometimes change is needed.  Recently, we found that to be true.

Josiah was receiving speech and occupational therapy twice per month.  That had been the schedule for months.  As he nears his second birthday, I wondered if that was enough.  After talking to other parents of children with Down syndrome, we decided to switch things up.  We reached out to a local rehabilitation center that offers traditional rehab-based therapy.

Josiah was evaluated by their clinicians, two weeks ago, for speech and occupational therapy (OT).  He was deemed eligible for both services, twice weekly - that is quadruple the services he had been receiving.  

The evaluation for speech deemed him age-appropriate for receptive language skills; he understands everything.  His delays, however, in expressive speech were apparent (this was not new news).  Josiah says three words.  He will be two next month.  They have suggested using a communication book.  Where Josiah's receptive language skills are so keen, they feel he is a great candidate for such a tool.  We are excited to try this new communication aide.

OT will continue to work on fine/gross motor skills.  I anticipate huge strides as the number of sessions per month have just multiplied x4.  I am excited as change is in the air.  Fall will be an exciting time for Josiah.  I believe that huge things are going to happen for him.  

What an exciting time it is.....


Stealing Solitude

When I was a little girl, I loved spending time at my Grandma's house.  I especially loved spending Thursday evenings at her house.  The Waltons used to air on Thursday nights.  My Grandma would sit in her red chair.  My aunt would sit on a couch, usually reading her newspaper.  I would sit on the floor, toys spread out around me.  For an hour, we would sit and watch the show we adored.

I used to marvel at John Boy.  He was the oldest of the Walton children.  In the show, he was depicted as a high school student - later a college student.  Inevitably, during each episode, the viewer would observe John Boy sitting at his desk.  The desk was nestled beneath a window in his bedroom; It looked out into the front yard.  There, he would write.

He would write about his family.  He would write about recent events .  He would write about his desires.  He never sought to embellish but merely to tell a story.  Yes, sometimes the stories were big (such as when he witnessed the Hindenburg explode).  That was not the norm, though.  Usually, he was telling about a first kiss, or of an old woman drinking bootleg whiskey (unknowingly).  

It seemed already, to me, that most writers sought drama.  How many twists and turns could a show provide?  How many intrigues could a story include?  I guess that's why I was enamored by the Waltons.  I was enamored by John Boy and his prolific ability to write of the simplicities of life.  That's where my passion for writing began.  It's where I first learned of the importance of the "little things".  Every story does not need to involve drama, intrigue, betrayal, and murder.  A good story can tell of a poplar tree, a child giggling, a first kiss.  Yes, the older I become, the more important these things are to me.

In today's hustle and bustle, I sometimes struggle to find time for those little things: the time to write in the blog, time to just "be."  Sometimes they happen without notice (whilst collapsed in exhaustion).  Sometimes, there just isn't time.  

As summer ended, Fall crept in like a thief in the night.  Suddenly, we are in the throws of school, EI, therapies, playgroups, doctor's appointments, and extra curricular activities.  Just as morning comes too quickly, so does bedtime.  It seems harder and harder to find those moments of peace, those moments of solitude.

How very important they are for the mind and soul.  I will endeavor to find time for those little things.  Stealing solitude - how very important it is.