Tuesday, April 15, 2014

moving forward.

a few things have been going on around these parts.

or maybe not going on. since christmas i haven't sewn a thing. my sewing room mess has become the household dumping ground and honestly it gets a little overwhelming just to go in there. i seemed to have run out of my sewing mojo fuel and for the last few months have tried looking in numerous locations for a top up. just haven't found it yet. so. that's what's going on there. i may try to unload every single sewn animal, monster, food i have and see if that helps. new slate and starting with some fresh goods. we'll see how that goes. perhaps a clear out or giveaway via instagram?  find me on instagram: http://instagram.com/milesandozzie

well besides this snow today…. spring is finally springing? go spring. come on warm weather. windows are washed and looking like crystal.

on to the children.

  • halfway through grade one and hitting a wall, finding school too "boring," so we're going to be challenging him with some enrichment at home - worksheets, more reading, etc. - which he's not crazy keen on because it's like homework and takes away from his play time. hopefully i can find some fun activities too, so it's more play based than sitting down-homework based.
  • at school, they are learning to tell time, so i love that i can ask him what time it is and he's able to tell me. 
  • turning seven in a couple of weeks and every day he'll ask how many hours it is until the big day. he's very excited.
  • lego lego lego, every day.
  • extracurriculars: hockey, power skating, swimming + baseball (soon).
  • so into star wars that i finally had to break down and watch so i'd know what they're talking about.
  • also very into toilet humour, chapter books including toilet humour and fart jokes.
  • overall a very sweet, caring science enthusiast with a great desire to learn MORE about anything and everything. 


  • halfway through full day, every day junior kindergarten and is (finally kinda sorta) a-o-k with the routine that this brings. every day he'll ask if it's a school day and asks how many days until the weekend. (he is my child)
  • can recognize + read sight words (!!!) he has started bringing home level 1 books from school and reading them to myself, his daddy + miles
  • lego lego lego, every day.
  • extracurriculars: preCanSkate, swimming + t-ball (soon)
  • hums the star wars theme song so it gets stuck in my head. every. single. day.
  • prefers story books over chapter books at bedtime because he likes to look at the pictures.
  • his drawings have become quite detailed and i love to sit with him and talk about what's going on in them.
  • overall a boy who loves music (rock and roll particularly), drawing pictures of firetrucks, eating meals very slowly and anything to do with star wars.

ozzie's latest developments pertaining to his cerebral palsy:

last week we took ozzie to a very routine appointment with his PT and OT whom we hadn't seen since last summer.  his pt has returned from mat leave and we were advised by ozzie's orthopaedic surgeon to keep tabs with her so not to lose our connection with McMaster Children's Hospital Children's Developmental Rehabilitation Program (CDRP). pleasantries were exchanged with both the pt and ot and i gave them full updates on what ozzie has been up to, what he can do, what he has some trouble doing, etc.

the pt had ozzie lay down on the bed and she started doing range of motion (rom) measurements which include the degree of flexion in a joint (how far it can be bent) and extension (how far it can be stretched or extended out). his measurements on his right side (his tricky side, where he wears his AFO (the brace that goes up to his knee)) were really great - meaning his muscles have really been helped along by using this brace.

unfortunately ozzie's measurements were in the negatives regarding his left (somewhat "unaffected" side). with his current diagnosis being spastic diplegia (meaning both of his legs are affected) - i suppose we knew his left side would become affected at some point. however, we had just purchased/fitted him with his SMO (little shoe insert to stabilize his ankle) in august. it just isn't doing what we thought it would do and he's got a lot more clonus (jerky leg spasms) in his left leg as well as his right. or in other words, his muscles are getting tighter in his left leg. 

what typically happens in kids with cerebral palsy is this, via www.bcchildrens.ca

"The bones in children with cerebral palsy grow more quickly than the muscles. Muscles are stimulated to grow in length by moving and being stretched. This normally occurs throughout the day during a child’s activities and play time. In children with cerebral palsy, decreased control of muscles and increased muscle stiffness prevent muscles from moving through their full range of motion as easily or as often as other children. Because the bones grow faster than the muscles, the muscles become tight. This is especially true during growth spurts. A problem such as toe walking may become more apparent as the muscles in the heel cord become increasingly tight.
As children grow, their bones develop and change as they begin to use their muscles to move, particularly with standing and walking. This is called bone remodeling. Because children with cerebral palsy have decreased control of their muscles, have stiffness in their muscles, and/or are delayed in their independent mobility, bone development may not occur as expected. In addition, when bones do not develop as expected, the forces going through a child’s bones when they stand and move are different. These abnormal forces can cause the bones to “remodel” is a way that is not typical. These changes in the bone may become more noticeable as your child grows. To prevent deformities, equipment that supports posture and function may be recommended, from an early age, based on your child’s needs. Examples of equipment include orthotics, mobility aids such as a walker or crutches, standing frames, and wheelchairs with special seating,."

so what does this all really mean?

the pt suggested we get an AFO for ozzie's left leg. and he has to start wearing his gaiter (night brace) on each leg, to ensure he's getting an extra stretch while he's sleeping.

enter overwhelming sucker punch.

and deep breaths. i hadn't even brought my notebook with me to jot down notes like i usually do. there was also mention of the spasticity clinic again, serial casting and botox, as well as the gait analysis clinic - but i didn't ask too many questions. i will once we get there. right now i'm waiting on hearing back from our pt for the go ahead of ozzie's new AFO. 

ozzie and i spoke about it over a snack in the hospital cafeteria.

me: so ozzie, looks like you'll be getting ANOTHER AFO! the little shoe insert you have isn't quite doing what it's supposed to, and this new AFO is for your left leg. how do you feel about that?

ozzie: hmm. AWESOME! does that mean we get to go in the basement?

me: yup! that's where you'll get casted and they put the funny wet sticky tape on your leg…

ozzie: and while i'm waiting, i get to play with the toys?!

me: you betcha.

ozzie: and i get to pick my own designs on it, right? 

me: yes, and will you get the same as what you have on your brace now?

ozzie: no way mom, i'm going to get something different! this is gonna be cool!

all i can hope is that this kind of attitude he has continues.
he is strong, resilient and one hell of a determined kid that i'm sure a lot of us can learn a lot from.

i will keep you posted.

insert cute pictures of my kids here:

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