Jason and I have talked a lot about what will happen to our lives if we get a postive PWS diagnosis. For him, work will stay the same, but for me, I have a feeling everything is going to change. I'd originally planned to open my shop up again in the fall, but if Ellie-belle does have PWS, that means she will need round the clock care pretty much forever. Lots of appointments, specialist visits, etc... Not to mention, right now she's on her 3 hour feeding schedule, and that looks like it could continue a very long while if she continues to be unmotivated by food.
We've had the feeding tube back in for 5 days, and her oral feeding skills have declined. She just doesn't WANT to bottle feed. Lazy-bones. She's still little, though. Maybe by the time she reaches double digits things will change.
We've been talking about what life might be like if I don't work. It means a substantial decrease in our income; really substantial. So, we had a chat, imagined being in the Sahara desert living like Bedouins. From that perspective even telephones and televisions - things that "everybody has" become optional. We called our cable provider, and cancelled our service, luckily at no penalty. Hubs even managed to negotiate a $10/month savings on our continuing phone and internet service. To go without cable for the year saves us $540. Can you believe that? For the crap programming, we've been paying over half a thousand dollars a year! SO not worth it.
We have done a couple mega-cooking sessions. We buy and cook in bulk, complete meals that are supremely easy to prepare the day-of, and lend themselves well to being taken to work for lunch. Cooking this way, saves us a substantial amount of money every month, and the added bonus is that Jay doesn't eat out. Eating out, was costing us $350 a month. So far, with two major changes, we've managed to save ourselves a lot of money.
Check out this cook book, it's amazing!
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