Monday, 22 August 2011

I hate the word hemiplegia

I'm a baby, not a hemi

Until recently my most hated word was 'panties'. Have you seen the introduction of the movie 'The hand that rocks the cradle?'. Well the word 'panties' reminds me of that creepy gynecologist. Anyway, I've digressed.....My new most hated word is 'hemiplegia'. It means 'paralysis down one side of the body'. My son has hemiplegia and it really shits me. What shits me more is when someone says "Maxwell is a right hemi". Um, no he's not, he has a right sided hemiplegia.

Today we finally had Max's physiotherapy/OT assessment at RCH. Apparently it's normal to go 6 weeks without seeing a physio upon discharge. They like to give you time to settle in at home first. Ummm it took a few days to settle in at home not 6 weeks. You know those times when you feel ok during a situation but when you get home and think about it, you just get more and more annoyed? This is how I feel now.

There are a few things that annoyed me. The first being that the physio had to score him on some tests, add up the scores and then generate a graph which led her to the conclusion that Max needs to be monitored (No shit captain obvious)

The second thing that annoys me is that Max has some mild developmental delays. It's annoying because we work our butts off every single day doing physio with him and other people do f--- all with their kids. It's not like I expect him to be a superbaby, I was just kinda hoping for 'normal' (ish).

The third thing that annoys me is that because Max's developmental delays are mild, they only want to see him every 2-3 weeks. The only reason that Max isn't more delayed is because I work my butt off with him. AND I figure out what exercises to do with him by doing research every spare minute I have. AND if I spend a few days focusing on his right arm it improves a bit, but he forgets the other things he has learnt. I try my best but I have no idea what I'm doing and I could really use some more support from the experts here. The pressure feels intense sometimes.
The Early Intervention people said that there could be a 1-2 year wait for their program. So, I'm going to pay for private physio/OT because at least then I won't be at the mercy of the public health system. I am not going to wait for my son to have major developmental delays before I intervene.

I wanted to finish this post on a happier note. This is Max finally using his right arm (without prompting) to swipe at his toys. Awesome job baby :)


  1. I was introduced to your blog through a friend on facebook. Wow. I have read every post in one sitting. You and Max are both so strong, you are both amazing. You have definitely educated me about rashes and if my little girl ever has a rash that doesn't blanch, we'll be straight off to seek treatment. Thank you for sharing your journey, and best of luck with everything.

  2. hemiplegia is just a word. Just like NORMAL (Oh and panties) Please tell me what Normal is. We are all different.I have been lucky enough to follow this blog thanks to Belinda whom I have to say has been active at spreading the word of your and Max's plight. From what I have read Faith keep up the top work you are doing. Remember to write these words down because if like me when your child is 21 these words will make you smile

  3. Hi, my daughter has right hemiplegia. She's 22 months old. You can find her facebook page if you do a facebook search for "Ruby's World" Are you in Australia? Have you heard of Better Start funding?

  4. Hi, my daughter has right hemiplegia. She's 22 months old. You can find her facebook page if you do a facebook search for "Ruby's World" Are you in Australia? Have you heard of Better Start funding?

  5. Hi Craft and Cuddles! This post was written quite awhile ago, Max is now 14 months old and yes, we have better start funding now. I was fortunate enough to have been given the contact details for an Allied Health service that specialises in kids with Brain Injuries. We've been seeing a physiotherapist through there for ages (had to work extra hours to pay for it) but now it's covered under better start. We are in Melbourne, where abouts are you? You can email me at it's always nice to meet a fellow Aussie :)