Tuesday, November 6, 2012

a little noggin insight.

i'm feeling so much lighter folks. wow.

we met with a neurologist yesterday. it was a very enlightening appointment. many questions were answered, some still go unanswered and really, i think everyone should add a doctor like that to their circle of friends, you know to pick their brains, so to speak.

we arrived at mcmaster children's hospital for our appointment time of 3:00 pm. we were welcomed by a really easy going, lovely resident doctor. ozzie was shy at first, but quickly charmed her with his smile, his food likes and dislikes and his knowledge of firetrucks. the questions from here were straightforward - the history of ozzie that brought us there in the first place, my pregnancy medical history, ozzie's birth history, his general medical history etc. she also had ozzie up on the big bed to physically check him out. she had funny finger puppets to make things fun. ozzie was very patient and did everything she asked.

then we waited.
for an hour.

then the door opened! it was the resident and the neurologist! whee!
he was a super nice dude. he asked me what brought us here and if i had any questions in particular. and so i was prepared with my list of questions:
  • what happened
  • when did it happen?
  • where did it happen?
  • what's it called?
  • seizures: will there be a chance he has them? 
  • mri or eeg or future testing?
  • temper/patience issues related to his brain?
  • can we project any academic or learning problems due to this?

he congratulated me on being well prepared, with lots of great questions. and while the resident entertained ozzie with some colouring pages, the neurologist talked about ozzie's brain.

basically what happened was this:
at some point while ozzie was in utero, between 24-34 weeks gestation, an event occurred within the placenta. somehow in his own body, there was a blip of sorts. his own blood supply wasn't oxygenated for optimal brain development. as his mother, i had nothing to do with it whatsoever. it is not genetic. it's just one of those things that happens.

see that black space  in the top middle? it should be the same size as the one to the left of it .




next up, which came out of left field entirely? A NEW DIAGNOSIS.
asymmetrical spastic diplegia
meaning, to some degree ALL his limbs are affected, his legs more than his arms. it's so mild on his left side that we didn't know or notice. so when the dr. asked me, "when did you notice issues with his left leg?" i in turn responded, that's his GOOD side, so.. um, never? ozzie thinks it's neat when his legs do the, "funny thing" or tremors, known as clonus. so we discussed this. and well, nothing changes. if people ask what he has? in short...Cerebral Palsy.

moving on to seizures, if/when they happen. there's still a possibility. now that ozzie's diagnosis has changed to diplegia, the odds are stacked in his favour and the chance of him having a seizure goes down to a 15-25%. and at this point, because the seizures haven't revealed themselves, they may not ever. we're moving forward with this in mind so our minds can rest a little bit easier.

we have no more further testing in regards to mri's or eeg's. yay!

llama llama mad at mama - ozzie has a temper at times and patience issues. what 3 year old doesn't? so we did bring this up. does it relate to what has happened in his brain? basically the answer, is no. usually frustrations in kids relate to communication - he's talking and sentencing. or it relates to the child getting mad at their own limbs for not doing what their brain is telling them to do. which isn't a problem either. so in conclusion, he's a normal temper tantrum-ing, impatient 3 year old.

in regards to ozzie's academic potential, well, that is a wait and see game. we really won't know until he's in the classroom as he gets older. there were a couple key points the doctor revealed that are very important to me and i think will stick with me for a long while:

on one hand - we could use his cp to his advantage to get extra help in the classroom
however on the other hand - his cp could be used against him and expectations of him are lowered (do not like)

ozzie is a really bright, smart kid and just like our other child, we will also have high expectations of him regardless of his disability. like i've said before, it's a definition of what he has, but he most certainly will NOT be defined by it. we want him to achieve his highest potential and will push him to do this. that's our job as parents isn't it?

so, almost 3 hours later our appointment was complete. i feel lighter. less guilty. his new diagnosis is still rattling my brain a little, but again it's non progressive. we're moving forward with our therapies as usual, will aim for highest possible achievement in whatever ozzie is involved in and above all else, we will love that little boy with all the love our hearts have to give. because in the end, that's what parents do.


4 comments:

  1. Non-progressive. Lessened likelihood of seizures. Answers. This is all so very great to read.

    Love to you all. xo

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  2. Thanks for sharing with us! Mason his first MRI last week and we are still waiting for results. So glad they know what's up with your little Man and he is as healthy as he can be!

    xoxox

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  3. So glad you got all of that info!

    ReplyDelete