Physical disabilities

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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.

Edited by aimeejoy