I said I was going to write a novel, I just didn’t think it would happen so quickly.
The family has an early schedule today. Genevieve has a hockey game at 8:15 am (at a rink an hour away and they are required to be there one hour before the puck drops) and Natalie started work at 7 am this morning. I was clearly delusional last night thinking I could sleep in since I was staying home with Austin. Once Genevieve was up and moving on the main floor of the house (about 5:45 am) the “baby” aka “Austin” monitor picked up a lot of activity in Austin’s room.
Being the wonderful mom that I am, I simply put my head under the pillow thinking I’d buy a little more time. After all, at this point in my life I’m not competing for mother of the year, I just want to survive the day, then the week, then the month, then the year; that’s as simple as it gets. The pillow didn’t work, I ended up assuming my post as Kitchen Sentry by 6:40 am. In the first half-hour Austin was up he had already eaten a bagel, a pop tart and a hot dog.
Then it was action time, what am I going to do to control this, can I control this?
Quickly my fingers went into action to discover what I could find out about Prader-Willi Syndrome (PWS). Could there be strategies for PWS that will help with Austin’s increased appetite? I’ve spent a little time on Prader-Willi Syndrome website, pwsausa.org. I did resist the urge to call the crisis number listed on the support page. Honestly, what I might deem as a crisis may not be a true crisis, but I must say just seeing a number readily available was reassuring, not so much for me but for those families who deal with PWS day-in and day-out.
Clearly I’m not quite ready to start locking refrigerators or cabinets, but soon I might relocate some snack food so Austin won’t have easy access. I’ve got to take a close look at what’s available in the house to snack on and I’m going to have to try to move in snacks with a much lower calorie intake. In addition, I’ll allow some grazing but I will limit quantity. It’s really a pain in the arse because Austin is somewhat of a picky eater – I wished he liked carrot or celery sticks. He does like apple slices so that’s one healthy snack I will promote during the day.
I’m hoping I can encourage him to drink more fluids, problem is he doesn’t like water. Besides chocolate milk, milk I have him drink with a meal and one Mt. Dew during the day (I switched to the little cans, I’ll let him have two, which equals 15 oz. a little more than one regular can of pop) he will only drink Grape Juicy Juice (which I dilute with water – at least that should reduce calories). I may try to switching the Mt. Dew to the diet version although I don’t like artificial sweeteners and I'm not even sure if he'll drink it. Bottom line - I'm beginning to feel like I’m just in a no-win situation.
For all the weight Austin lost while in the hospital in December he has put it all back on, including a few extra pounds. It does help if I assume my post as Kitchen Sentry. I’m thinking about doing a visual schedule for snacks but I think I might need to do some charting first, identify if there are any “peak” times for hunger and how long can he manage between snacks. You'd be amazed at what I use excel for - not your typical business application - just an opportunity to keep my skills sharp even though I believe it's doubtful I'll ever re-enter the workforce.
With all that we’ve been through Austin’s behavior has been amazing but I fear we’re at a tipping point and it’s all going to be over food, rooted in the steroids he needs to take to treat his Hemolytic Anemia.
I know it’s going to be a very long day when at 8:28 am Austin's already asking “What’s for dinner babes?” Not once, but multiple times.
And on that note I'm beginning to wonder if I should just go back to bed and put the pillow over my head. :-)
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