Miss Ashlea is growing. When we saw the kidney specialist in June she decided that Ashlea wasn't growing enough and that we should increase her calories. Well the increased calories have done the trick - she has gained 1.5kg in 3 months - going from 12.5kg to 14kg. This means she is getting heavy. Too heavy for me to lift.
For some reason this difference between 12kg and 14kg has been enough to make me realise...
I can't keep carrying her around all the time.
Ashlea isn't just a young child that I carry everywhere (which has been my attitude up until now). She is a disabled young child that needs assistance with all forms of mobility. For some reason that whole vision of the future that includes wheelchairs, walking frames, bed, bath, toilet and pretty much everything else modifications has been the last thing on my mind.
I have been in denial.
Yes I know we have a walking frame and have applied for a wheelchair, but I guess I kind of saw those items as 'sometimes' things - ie we use them when we need them - rather than 'all the time' things.
I am now realising that we need to work out a way for Ashlea to get around that doesn't involve me carrying her. At present she crawls all around the house, but as soon as we need to go somewhere I pick her up. For example I pick her up and carry her to the car and put her in the carseat. I then lift her out of the carseat into her specialised pram. If we are using the walking frame I carry it down the back stairs, then carry her down the stairs, put her in it and when she has had enough I carry her and the walker back inside. I lift her in and out of the bath. Even if she is going to move from crawling on the floor to sitting in a chair I lift her into the chair. I lift her into her cot at night. Every single thing she does involves me lifting her in some way.
I believe the Occupational Therapists call these 'manual handling' issues. Somehow I have managed to remain completely in denial about how much manual handling and the physical logistics of disability are going to effect our lives. Now that I think about it, it is quite overwhelming.
Rather than freaking out and trying to work out a solution for each and every situation RIGHT NOW - which is what I'd like to do - I'm going to try to take it one step at a time. When a task becomes too difficult to continue doing, then I will find a solution to that one task. And then when the next one becomes unmanageable I will move on to that one.
Having said that there are two issues that do spring to mind immediately: bathing and transferring.
Lifting in and out of the bath is becoming dangerous - I have nearly slipped a couple of times while holding the slippery wetness of 14 squirming kilograms. Connected to that is the issue of Ashlea standing up and weight bearing while transferring from one chair to another - eg from a wheelchair to a shower chair (otherwise I'd still be lifting her into the shower chair!). She is unable to do this at present, and up until now I haven't really thought about how important a skill this is.
So, please leave all your logistics information for me. How do you manage? What modifications have you done to your house? How do you bathe your child? Can they do a standing transfer? What 'daily living' equipment do you have in your house?