This is something we should have done at least 5 years ago, probably more like 10. I believe it's been 20 years since we did it and the floors are in terrible shape. This picture gives a good illustration. I pulled the rug back to show the amount of wear on the floors. Even under the rug the floors are dull but not worn out. When we return they will be gleaming
It's not the expense that made us put this off, it's the hassle. When we did this 20 years ago we had too little boys. Maggie wasn't even born. We packed a bag and stayed at my parents house while the work was done. Now, we have Maggie and grandma's house is out because of the number of steps she has. I cannot carry Maggie up the stairs and would be completely unable to get her wheelchair in and out. We are going to stay in a friend's house across the Bay. There are three or four steps into the house, but then it's all one level.
We are lucky to get this offer. It's a fully furnished house, but no one is living there, so we won't be imposing on their lives.
And believe me we would be an imposition on the most generous family. These days it's not as simple as "packing a bag". We have to bring all Maggie's supplies. In addition to cleaning things out I have been gathering supplies we will need for our four days out of the house. The more things I put in, the more I think of.
Finally I decided it was safer to make a list which I've pasted in below. The ones with x's are already in the box, so I have dozens of things to add, but I can't do most until the last minute. Note this list does not include clothes for Maggie (there is one word that says "clothes") and does not include anything at all for Steve and I.
Can you imagine seeing house guest pull up and start unloading all this stuff to stay in your house?
I think I would pull the curtains shut and bolt the door and hide. I kind of want to anyway.
Time to repeat my mantra - it will all be worth it.
Dynavox and charger
Feeding 1.5 cases Vivonex, feeding tubes and syringes
atravent, twice a day,
pulmizyme – in fridge
tobi – in fridge
saline bullets XXXX
SAT monitor (plus sensor)
Compressor (plus tubing)
Nebulizer (plus tubing and nebs)
Suction machines (plus canisters, tubes, little suckers, and catheters)
Feeding pump – don’t bring feed manually
Vest machine – don’t bring – do manual chest pt
Oxygen – order concentrator from CHME
Diapers (3 packs)
Chucks (3 packs)
Catheters (I box) XXXX
Gloves (I box) XXX
Trach sponges XXXX
Extra trach XXXX
Extra g-tube XXXX
Big bottle of soap
Masks (for tobi)
Roll of garbage bags
10-12 scarves XXXX
Music – IPOD and Player