Physical disabilities
Printed From: OHbaby!
Category: Support
Forum Name: Parenting a child with special needs
Forum Description: A place for those parenting children with special needs to find support and share their thoughts
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=35816
Printed Date: 27 June 2025 at 9:35am
Software Version: Web Wiz Forums 12.05 - http://www.webwizforums.com
Topic: Physical disabilities
Posted By: aimeejoy
Subject: Physical disabilities
Date Posted: 19 September 2010 at 2:24pm
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Hey everyone, haven't been on here for ages, but still been lurking around!
Just wondering if there is anyone of you out there with a child with only physical difficulties? For those that don't know my now 2.5 year old was diagnosed with a tumour inside her spinal cord at neck level, and after 5 operations on it (last scan six months ago looked good, waiting for next scan in a few weeks) she is now a C2 incomplete tetraplegic/quadriplegic. She can walk a little with a walking frame, but can't stand unassisted. She crawls well and can pull to stand, but has limited hand function - right hand has no finger movement so she can only use it a little and right hand is very weak. We are unsure if she has full bladder and bowel sensation as toilet training is very hit and miss. Also in her arms she has no pain sensation and limited hot/cold sensation and she uses her face a lot to feel things. After 18 months of chemo, operations and seemingly continuous illnesses, hospital stays, feeding tube until last month and many complications, things are going well now and she is such a happy, determined and amazing little girl. And although she is fairly independent she needs a lot of help with everyday things normal two year olds can do - dressing, eating, toileting, playing, she can't turn pages in a book and trying to play outside is hard work.... I guess now that we've been home for a few months it's starting to take its toll and I am sick of saying everything is fine when people ask - its not, its bloody hard work and I am tired! And my poor husband is bearing the brunt of my random moods and general anger at the world - whether that is from how things are now, or still getting over what we've been through I'm not sure. Don't know if thats what people want to hear though! :) Anyway after that long ramble, I would love to hear how others are getting on. ------------- Aimee Hannah 22/10/05 Greer 11/02/08 |
Replies:
Posted By: lizzle
Date Posted: 19 September 2010 at 5:01pm
| Aimee - I have no advice ever, but just wanted to say that we(everyone in my house) thinks of you all the time. Hugs from us. |
Posted By: mummy_becks
Date Posted: 19 September 2010 at 6:47pm
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Aimee I am the same as Liz with no advice, but we all think of you alot. I will ahve some veges for you this year that you are more than welcome too again. ------------- I was a puree feeder, forward facing, cot sleeping, pram pushing kind of Mum... and my kids survived! |
Posted By: ElfsMum
Date Posted: 19 September 2010 at 6:52pm
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Aimee-we think of you often too.. i dont have a child with a physical disability but my brother has a very rare (as in none in the world atm) physical disability and has recently had to go to a rest home as there is nowhere suitable to care for him:( so i do have some experience on the matter..and I also used to look after some disabled children (though mostly intellectual as well) ...... ------------- Mum to two amazing boys! |
Posted By: myfullhouse
Date Posted: 19 September 2010 at 7:36pm
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I am sorry, I have no real advice as I haven't experienced anything like this, but hugs to you as it is obviously very tiring.
On the 'telling everyone it is fine' front though I do have some experience in that I have PND and went undiagnosed for a long time as I kept telling everyone that I was fine when I wasn't. My advice would be to tell the truth when people ask, even if they don't want to hear the real answer as one day someone will and they will help you in whatever way they can. I found it alot better when I started telling people what days were hard or alternatively when we had a good day. My family started offering more support because they now know I need it. Do you have anything like http://www.parentport.co.nz/index.htm - ParentPort in your area? They might be able to give you a hand occasionally to take the pressure off ------------- Lindsey 
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Posted By: aimeejoy
Date Posted: 19 September 2010 at 8:15pm
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Thanks guys :) Stacey messaged me with a fantastic and active forum about spinal cord injury, which should help. ------------- Aimee Hannah 22/10/05 Greer 11/02/08 |
Posted By: LittleBug
Date Posted: 20 September 2010 at 12:35pm
Big hugs Aimee, I think of you often too! I think you are such an amazing champion of a mummy    ------------- Chloe (4 years) and Oliver (3 years). |
Posted By: fattartsrock
Date Posted: 20 September 2010 at 7:48pm
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You guys are legends, Aimee. xxxx ------------- The Honest Un PC Parent of 2, usually stuck in the naughty corner! :P |
Posted By: kebakat
Date Posted: 20 September 2010 at 7:54pm
Yay I'm glad that ya like that forum 
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