Thursday, June 2, 2011

Sand castles

Maggie's room is small and oddly shaped. We had to add a shower to the half bath and that required using space in the room. The room is  full to bursting. It was never designed to be a bedroom. It is the converted breakfast room of the house. Accordingly there is no closet and no storage. And this girls has a LOT of things that need storing.

Her clothes that need a closet are hanging in the hall closet. Her extra supplies are in the basement - taking up numerous shelves. Her room contains her giant bed with the built in drawers, a chair for the nurse, another dresser, one of those little plastic drawer sets full of tubes and supplies and a set of shelves that are spilling their contents. The bathroom has two cabinets full of supplies and a bath seat in the shower. these days the bath seat is largely used to dry tubes and pieces of the nebulizer of suction machines. Maggie is just too big to fit in the shower anymore.

In addition there are the machines. She has an oxygen tank, a suction machine, a compressor for the mist, a feeding pump, a nebulizer, There is no room for the pulmo vest so that lives in the dining room.  Another suction Machine and the dynavox stay in the living room to charge at night. The wheelchair is only in her room if she is sitting in it and then passage is impossible unless one walks over the nurse's chair to get out to the deck or into the bathroom.

There is simply no room for anything else. I had to draw a line in the sand and say no more. People want to give Maggie lovely decorative things but I have to say no. We are at capacity and beyond.

But now she needs another machine. The doctor says the CPAP machine is necessary at night to get Maggie's lungs to open, and she says it's only the size of a toaster. Ok, where will that go. She will need it all night every night as she does all the other machines, so we have to find a place.

I have to go move that line in the sand. We need more room in the castle.


  1. HOw about moving her into one of the boy's old bedrooms?? Are they bigger than her room??

  2. I wish you could call on that extreme housing/decorating show.


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