Tuesday, February 10, 2015

#TeamOzzie

every time a big appointment happens for my ozzie, for days and even weeks beforehand, my stomach is in knots, i hide the tears and wonder a lot about the whys.

i try to focus on the short term pain for long term gain. focus on the love. focus on the boy.
and that's what i'm trying to do right now.

this 5 year old boy has seen a number of {awesome} specialists in the last 3.5 years, some on an ongoing basis, including:
physiotherapists.
occupational therapists.
an orthotist.
developmental paediatricians.
paediatric orthopaedic surgeon.
a neurologist.
a geneticist.


he has had an mri.
he has had X-rays of his hips.
he did constraint therapy.
he frequents the prosthetics and orthotics department.
he has gone to gait analysis.
he has been to the spasticity clinic.

ozzie has cerebral palsy.
and his diagnosis doesn't define him.

he is a little boy who loves:
lego.
playing minecraft.
touching your earlobes.
drawing firetrucks, boats and creepers.
playing on the beach.
watching Stampy on youtube.
angry birds on the iPad.
star wars.
his friends.

he has played tball the last 2 summers and plans to play soccer this year. he goes to skating lessons, with his brother on the ice with him, encouraging him and cheering him on. and the day he learned to stand up on the ice? i was in tears on the sidelines, that was MY christmas morning. he loves to run. he will swim, as long as he can touch the bottom. he has started piano lessons. he loves to dance. and loves jokes about farts.

he has "a whole world he visits at night - with a secret lab!"
he has a job at a sushi restaurant making the sushi.
he has already had so many girlfriends that i can't keep track who is his girlfriend and who is just a friend.
he also has a really great imagination, that knows no limits.

he also knows the ins and outs of Chedoke Hospital in hamilton, where he goes for pt + ot as well as the prosthetics and orthotics department. he has to, "use the force" to open up the front doors, he loves the fish tank downstairs and knows where the sticker treasure box is. he loves the underground parking at McMaster Children's Hospital and the the spiral wishing well coin funnel thingy. there is always a request for a snack, at either locations and he'll almost always ask to get something for his brother too.

the number of appointments he's had the last 6 months could easily rival his first 2-3 years combined. he's a growing boy and growth is great and he's healthy! but growth in a child with cerebral palsy presents a few challenges. a child, like ozzie, with spastic muscles (tightness) may find it harder to move. what has been happening to ozzie's legs, is this:

the spastic muscles are
tight - too active and unable to relax much
stiff - too much tone or resistance

when ozzie walks, the brains sends many signals to the muscles. it tells some muscles to be active and tells others to relax. spasticity occurs when the signals telling muscles to relax are blocked. and this blockage is caused by damage to the nerves in the brain (cp).
*cited from mcmaster children's hospital

he has ongoing physiotherapy.
he uses 2 AFOs (ankle-foot orthosis) his "tall brace"
he uses a SMO (supra malleolar orthosis) his "short brace"
stretching out his muscles using his gaitor, his "night brace"
but still
spastic muscles.

which brings us to his next big appointment.

botox injections.

why botox? because when botox is injected, it blocks a chemical signal between the nerve and the muscle which then prevents the muscle from contracting and relieves spasticity. we're hoping to see results in 7-14 days after the procedure and they continue to last for several months. we hope it helps him do his everyday activities better and that he is just simply, able to move better.

i have his bag almost all packed and ready for tomorrow:
boogie board.
roby, his new custom robot stuffy.
ipad.
star wars lego set for his bravery.

so if you don't mind, please think good thoughts for him.
and well, me too.
i need as much of them as i can get.

xxoo
#TeamOzzie