Monday, October 19, 2009

Weighty Matters

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.

Totally.

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?

5 comments:

Marie said...

Hi! Did you know that they make lifts to help with moving people in and out of chairs, vehicles, and bathtubs. I don't know where you live but I'm assuming not in the states since you are giving Ms. Ashlea's weight in kilograms. I would think that your insurance would cover the lift but if it doesn't you can probably buy one off the internet. Even the used ones are good. You would probably only need to buy a new sling. I hope this helps.
Oh, also are you familiar with Rachel Coleman of Signing Time? She had a personal trainer come to her house and work with her and her husband on doing exercises specifically to help them with taking care of all of their daughter Lucy's daily needs.
Good luck!

Big brother, Little sister. said...

Oh Alison you have read my mind! I think it must be a 14kg thing! lol
I too take the quick easy option but have been thinking or rather my back has been telling me that I need to re-think these transfers. I have been using the wheelchair more and more even though there is that last part of the lift into it as such. the bath is my big thing too as he loves it so much but a wheel in shower would be better in the long term.
Love bron

Sarah said...

Even though Violet is mobile, she now weighs 20kg's which is mainly weight gain from her seizure meds and I am still lifting her in and out of the car, bath, pram etc. Not to mention play centres as she is unable to do these things on her own still.

I totally agree it is very tiring and the other day at the play centre while I was carrying her up, I fell and really hurt myself trying to save her from being hurt.

I think it is hugely important to think about looking after yourself as far as back etc goes, as if anything happens to it things would be even worse. Easier said than done I know, when you have a busy life and want to get in and out of places as quickly as possible.

n0thingbuteverything said...

I so hear you on this. Something on my mind even more now that I am pregnant and not supposed to be heavy lifting anyway. My current strategy is rather than resolving the lifting problem, I am working on my own strength. I am doing some weight training and swimming to try and ensure my body is able to cope with the extra weight. I've also started seeing a physio and have been discussing the specifics of the 'best' way to lift.

Aside from that, in Vic there are organisations that will come to your house to help with problem solving accessible bathrooms etc. As we are still renting, it's not really much use to us, but when we buy a house, I'll definitely be looking at ways to make a house easier to get around. That doesn't solve the problem totally though....guess it seems though that we are all agreeing that is IS a big issue ;-(.

Coley said...

I saw your comment on my "ghetto wheelchair" post. The desk chair with wheels is working good for us on our 2nd floor. I lift him straight into it, push him to the bathroom/bedroom, lift him out, and it seems to be working well so far.

Another thing I do is when lifting him out of the bath tub, I put a big towel right outside the tub and I set him on the towel and dry him off right there on that towel with another towel.

Also, when you are lifting her try to make sure you lift her with your legs as much as possible to save your back. I learned this the hard way by throwing out my back lifting Noah the wrong way a few different times!

Ok, that's all I got for now. :)