Where the hell do they expect us to store all this stuff???

[bigbluebus]

Winge alert:
Just had a new delivery of 'slips' nappies for DD. She has changed to a new make in a different size. So whereas we used to get 3 boxes, we have just had a delivery of 6 boxes - which is 12 weeks supply. (The new boxes aren't as deep but are the same width). I used to store the boxes under DDs bed. It is a hospital style electric bed, so it goes up and down - only it doesn't go down because of all the boxes stacked under it!!!! But I can't fit 6 boxes under there.

DD is also tube fed, so we get a feed delivery every month, so that is stacked behind her bathroom door. We also need syringes in 3 different sizes - so they come by the boxful too - which we keep in her wardrobe. SHe also needs a suction machine, so all the tubing etc for that is stored in her bathroom as well. There is a large oxygen cylinder which is in another cupboard in her bedroom too.

One double wall cupboard in our kitchen is full of her medication.

DD is in a wheelchair, so everything needs to be put away in cupboards so that you can move the wheelchair around easily.

I think you need to live in a castle to store all this stuff!!!! We are lucky that we do have a spare bedroom, if we needed to overflow into that, but I would like to keep it as a bedroom rather than a storage room, so that vsitors can stay and also so that carers that come in don't need to go in other rooms!!!!
I was once told by an OT that if you apply for a DFG for an extension for your disabled child,eg downstairs bedroom, they won't allow you to factor in any extra space for storage of equipment!!!!

I know there are some of you on here who have children who must be getting this amount of stuff supplied ......... so where do you put it all?????

Linen closets, cellar, my "sewing room" is now gone to Bee's things, the garage for equipment not in constant use, the "spare" bedroom is for the nurse and the closet is full of her supplies... Basically, there is nowhere in the house that has not been spoken for :/

I even have her things in my closet... it is impossible to make the house presentable when I feel like I am always hiding things here and there...

Another house here that is choc a block with b£**#$ boxes!

I want a nice house that i can actually clean properly rather than just rearranging stuff.
Dh also needs to curb his hoarding tendencies.

My whinge.
Our new sofas came today but we need to get rid of the 17 year old falling to pieces filthy, shit, wee and vomit covered ones. Told dh i would ring the council but last night he decided we won't be able to get them out of the house on our own.
They will be here this time next year.

(i am not well, i need pampering but Ds is off school too.)

star can't you take a saw or an axe to the old sofas...... then take them to the tip bit by bit? (assuming you have a car).

One of the 'advantages' of having disabled DD is she has a wheelchair accessible vehicle which can fit an incredible amount of junk into it (when she's not in it). We have managed to fit an old 3 seater sofa in the back of her car to take it to the 'household recycling centre) and before anyone comments on using a motability car for purposes other than carrying DD ... I can assure you all it was a sofa that DD will have puked on many times in the past, hence why it needed to go!!!!!

Star, we have the same problem: feeding supplies and formula, suction catheters and tubing, syringes, a world of medication, bath chairs, Leckey squiggles, ventilator water ( 12 wks worth )!and a standing frame on order.. Oh and a massive buggy too! So I decided to buy an outdoor storage unit to slot by the back door to stash all the non perishables in. Oh and to distract vistors / myself from bulging cupboards by putting up a massive Christmas tree !! Hehehe!

Bigbluebus we have a berlingo so we have to go through the van lane at our dump. (we are just too tall for the barrier) We can do this for free only if we have all four seats in place which would take years! if we put the seats down we have to pay as a small business - and the councils bulky "pick up" will be cheaper. But they charge by item so we can't go above five pieces!! we will work something out when our cold (flu??) addled brains are clearer.

We are also temporarily renting storage for stuff that we can ship out; the idea is three months while we deep clean and get people in to do jobs. I suspect that will stretch....its most of my wages but worth it. Although i may feel differently if i am the one doing emergency night time.runs to get nappies!
We all hoard but only one of us (me) is willing to part with stuff!

I know what you mean about hoarding, star. DH has never forgiven me for insisting that his beer mat collection and his match box collection, from his student days, went in the bin. He also collects maps - OS maps of places we are never likely to go to and he buys up maps that the library are selling off when they consider them to be out of date. I have allowed the maps to stay but they are in the attic.
My mum and dad are champion hoarders. We have gradually pursuaded them to get rid of all the crap in their attic and back room. Fortunately their local tip views our WAV as a car (as does our local tip) so we can get away with the car loaded floor to ceiling without charge (no barriers at either)although we do get funny looks when we drop the ramp down at the back. We were at Mum & Dads house a couple of weeks ago when dad announced that he had found some more stuff in a cupboard under the house that needed to go to the tip (he is finally coming around to the fact that we don't want to be dealing with this pile of crap when they are no longer around). DH went to the tip with old bits of worktop, glass from a greenhouse that was taken down 20 years ago and my old push along scooter - which hadn't been used for at least 36 years!!!

Toots, the bulky equipment is an even bigger pain. When DD was small we had a standing frame and a Jenks chair in our living room in addition to all her toys and our usual furniture. We quickly realised we were going to run out of space when DS came along, so were fortunate to be able to convert our garage into a playroom. Now she is in a wheelchair all the time. She does have a 'pea pod' chair, but that is just like a giant beanbag and fits in well in the playroom since we ditched the sofa. And we've been lucky enough to have ceiling track hoists installed, so got rid of the mobile hoist, which took up so much space.
We do the lottery every week and dream that if we win the jackpot, we will build a large bungalow which will cater for all DDs needs and have loads of storage space..

The standing frame arrived today ... It's parked in front of the washing machine! I think we seriously need to start thinking about a bigger house. Bigblue the playroom sounds good... Annoyingly for us just before DD was born we knocked through most of the house so we have a big kitchen diner and a tv room downstairs... But DD needs a room on the ground floor so now everything is squeezed into one room - it's a kitchen / sitting room/ therapy room. Oh well, it's cosy!
I have started playing the lottery too..... And euro millions! Fingers crossed !

Can I ask at what point you started using a hoist for your DD? My DD is chunking up finally and getting heavier and heavier. I reckon she's about 14k now.

We had ceiling hoists and wheelchair lift installed when DD was 11 - but she has a chromosome disorder which means she is very small for her age and probably weighed about 18kg Max at that point and was a poor eater. Still only in age 11-12 clothes now and she's 18 and probably won't grow any bigger. She now weighs approx 32kg (thats tube feeding for you) so we definitely couldn't lift her now. We got a Disabled Facilities grant for the ceiling track hoist - don't let them talk you into having a mobile hoist unless you have no choice (ie your ceiling won't take a hoist or you need something in every room) as the mobile hoist took up loads of space and it was hard to stop DS from climbing on it! They are also supposed to be 2 people to use them - whereas a ceiling track hoist can be easily managed by one person.(although outside agencies insist on 2 carers for moving and handling)

We only got a Wheelchair accessible vehicle 4 years ago - up until that point I was lifting DD into a car seat and hoiking her wheelchair into the boot - its a wonder I've got any back left!

My advice to you - don't leave it too late. It takes time to arrange these things. Speak to your OT sooner rather than later and get the ball rolling.