Grandview

In September of 2017, 13 months after his birth we were referred to Grandview Kids for an multidisciplinary assessment of James as we were all noticing significant gaps in his motor development.  He was not yet able to sit independently or crawl.  I was at work and so Ali took James there by herself.  Their initial assessment of James revealed that he did indeed have cerebral palsy in the form of spastic diplegia and that he would need extensive physiotherapy to challenge his motor development, as well as occupational therapy and speech therapy.  Grandview physiotherapy offers a once a week visit for an 8 week block, then a break for 8 weeks, and then it cycles back around.  OHIP covers the cost of Grandview which is wonderful.  However, the  physiotherapy needed for children with spastic diplegia is every day in order to set the neuropathways for movement through consistent repetition.  Habits are formed through daily use and frequent recollection.  That is why many children with spastic diplegia attend a variety of private therapies to supplement what is offered at Grandview in order to improve the possibility of independent mobility.

Grandview's mission is to inspire possibilities for children and youth with special needs.  Their vision is to provide services and support for children with special needs and their families.

Grandview describing their physiotherapy:

"Physiotherapists at Grandview provide a range of services to support the development and maintenance of functional mobility skills at home, and in the community.  These services may be available for your child from birth through the school years.

Physiotherapists work with children/youth and their families/caregivers to achieve goals such as achievement of new mobility milestones, maintenance of posture and alignment of the body needed for breathing, digestion and movement, or participation in physical activities with family and friends."

Here are a few short videoclips of James working with Grandview physio and occupational therapists.

It was through GrandviewKids that Ali and I were welcomed into a community of like-minded parents of children with cerebral palsy.  This sharing of experiences has been invaluable.  Encouraging one another in the stresses and accomplishments of our children has been moving and rewarding.

Year in Review

This post is going to cover a longer period of time.  About 1 year to be exact.

Prematurity:

Our plan on arriving home was shaped by a class at Mount Sinai for "parents of premature children" that Ali and I attended (along with Gran and Opa) while James was still in the NICU.  The doctor suggested that "despite all of the needs that your child will display that will require a lot of attention due to their prematurity, you need to challenge the developmental milestones just like you would a full term baby. View your child as much as you can as a full term baby and leave the NICU behind you."

This meant that we had to try not to be hyperaware of James' needs, as if he was still hooked up to machines measuring every slight change.  We needed to treat him the way that other babies are treated.  Now that said, we were also instructed to avoid crowds and public spaces with James for the first three months as his immunity capabilities were low.  The third trimester, which James skipped, tends to be the time when antibodies are transferred from mother to baby to allow them to fight the wide world of germs.  We were also directed to the following over the months ahead:

• RSV (Respiratory syncytial virus) shots to protect against respiratory illnesses

• ROP (Retinopathy of Prematurity) eye examinations on four different occasions for vision screenings

• Follow up appointments with our Pediatricians, Neurologists, GI specialists at Sick Kids

• Frequent visits from our Occupational Therapist at home

• Frequent visits to our Pediatrician for various needs

It was a hard year, in some respects - dealing with colic and GI issues.  Yet James pulled through it all.  He was becoming a happy boy, with a full smile and a barrel of laughter waiting to spill from inside him.

At the Museum

Lots of Tummy Time

Taxes:

To paraphrase Noam Chomsky,  who remarks with an amazing irony regarding the popular day of mourning on April 15th in the U.S (tax season).  He says

Tax day should be a day of mass celebration.  It's the day where we all got together, worked out some plans and programs, and now we're participating to implement them.  

Now, I have never lived in the U.S. and won't comment on their situation. However, I can honestly say that paying taxes in Canada means something more to me than it ever has up to this point.  Let me explain.

I asked a nurse at Sick Kids what she thought a week in the NICU might cost if our healthcare system was privately funded.  She replied (and don't quote me on this, i'm just relaying her estimate) that it would be somewhere around $40,000-50,000 per week.  Wow.  James had 6 and a half weeks in the NICU.  You do the math.  I will forever be paying taxes with a spirit of gratitude knowing that my son, and other children experiencing similar medical needs, don't have to live with that debt over their heads.

Thank you Canada!

Good Times:

Here are some fun moments with James throughout the course of the year:

Here is how you are supposed to practice the air guitar...

James and Rory

James and Gran

Auntie Tracy

First Birthday Party:

As the first birthday for James approached, we were struck with the fact that we can actually remember his birth-day.  It's funny how none of us remember our own day of birth, but the birth of a child is engrained into our memory.  Celebrating his birthday held opposite emotions as we recalled the traumatic way he entered the world.  Leading up to this day had many tears, as we faced the painful reality of shifting expectations, the daily grind of the NICU, the countless appointments since arriving home, the sleepless nights and the constant fear of the uncharted waters that lay ahead of us.  We remembered what it felt like to be completely at the end of yourself hoping that God would intervene and help the situation.  The metaphor of a candle burning in the wind was an image I used to answer the loaded question of "how are you  guys doing?".  It was as if James was a single candle in the dark, and our hands were cupped around the flame attempting to shelter him from the winds.  Taking James to appointments across the city, working on strengthening his core through tummy time, battling through the colic, reflux and GI issues, and supporting him to explore his environment were the ways that we as parents held back the winds and permitted his development.

Celebrating his first birthday was also a moment in time when all his family chose to stop and acknowledge what a beautiful thing life is, and what a gift James is to us all.  We celebrated James together.  He has a support network around him that lifts him up in love and watching him dig into the cake that Auntie Jay made for him was priceless.  Each hand reached out, first with hesitation, and then vigour as he grabbed, ripped, dropped and ate the masterpiece in front of him.  He will need the same initiative and stamina in the years to come throughout the various physiotherapies he will attend.  James will need to attack them the same way he attacked the cake.  We were all so proud of him as we stood around with our phones taking pictures and videos of his exploration.  Ali and I had our family each write a letter to James that he will open on his 18th birthday.

Home Sweet Home

Bringing James from the hospital to our home was so exciting.  We had stayed in amazing institutions, but they were still institutions, lacking the environment needed to create a home.  This meant that Ali and I no longer had to leave James every night and drive back to our empty home.  James no longer had to be woken up to be poked and prodded with tests, or awakened by the conversations/ screaming babies/ buzzing and beeps of machines going off on timers.  He could enter the spaces that we had prepared for him, and he could live the life of a baby with us.

Leaving him each evening at the hospital was not easy. He became more and more aware of us leaving as he got older.  He would often cry as we left, which did not make the exit easy for him or us.  One morning when we arrived at the NICU we found the nurse at the front desk holding James (the NICU housed about 20 babies that all stayed within their designated areas).  She was happy to pass him off to us as we entered.  We were told that he had been crying all night and frequently wanted to be held, which became a common occurrence near the last week or two.  James knew us well, and he knew he wanted to be with us.  And now he finally could.  Welcome home James!

I'm Home!

Mum and James

Dad and James

The next phase of feeding and sleeping routines began.  And boy did this phase throw us through the ringer.  Feeding was a challenge, reflux and digestive issues made James very colicky for the first three months, and sleep was a figment of our imagination, especially when all he wanted was to be held day and night.  He was training us as much as we were training him.