Thursday, September 6, 2012


Any new and good adventure requires tweaking. I allow myself only to predict so much because I just don't know how anything will shake out until I experience it.

Like, drop-off for Cole. I was going to drive him to school (and have been) since I would otherwise have two kids at two bus stops at the same time. I thought Cole wouldn't care about riding the bus. Clearly, this means that I have forgotten what it's like to be 5 and see the bus like a candy store on wheels. He likes kindergarten and he sure likes the idea of going on the bus. Soooo, I'm going to drop off Cole at his buddy's house and they are going to ride the bus together. It gives me time to bring Dean to school and still have everyone where they need to be ON TIME, have my Coley be happy about the bus, and reduce a bit of the rushing around for myself. And, exhale.

Dean has been a little tired at school and has been napping (wish he'd do it at home, but we'll take it!) during nap time. He is hanging in there better than I thought he would for the first week. Woot!

Then, enter routine bloodwork that we do for Dr. Miller that was taken yesterday. Most of his bloodwork looks great, including his IGF-1 levels, which dictate his dosage for GH. Sweet! However, Dean's thyroid levels are hanging by a thread on the absolute lowest number of the "normal" range, which she said is effectively hypothyroidism for someone with PWS (and by the way, having hypothyroidism is totally common for PWS). So, we're going to add Synthroid to Dean's daily meds. Did I mention we have a chart for all this? And then his blood sugars are a little low, so we have to make sure he eats at the MAX every 3 hours and that we give him a protein/fat snack before bed. Combine this with his apnea and MAN should this kid be tired! (On that note, his sleep study for getting his BiPAP is tomorrow night... prayers that he tolerates it would be great!)

So, we need to change his eating habits a bit during the day and add a snack at night. Ok, we can do this.

Now that two kids are out of the house a little more, we are tweaking some things around the house. Picture some serious furniture moving (and for once it's not me doing it crazily in the middle of the night and Bob getting up to help crazy me so I can put it to rest and go to sleep). Emmett is in with the big boys and so we have an unused bedroom. The living room is driving me crazy, so we're moving furniture in there. We moved the TV in the family room so everyone can see without getting a crick in their necks.

Then there's Emmett, no real tweaking going on there. Ok, well, maybe some tweaking in behavior. The child is darn cute but seems to have a missile launcher for an arm. He throws EVERYTHING. We have been consistent about disciplining him for it, and yet he continues to throw. :/ For the most part, he's a very happy and pleasant little guy - just need to get some impulse control in the picture! And then, I remember that he's 1. They're not good on that whole not-do-whatever-comes-to-the-top-of-my-head thing. Then again, sometimes I'm not so good at that either. We all need tweaking, don't you think?


Janet Gulley said...

Ummm daily tweaking?

Ali Foley Shenk said...

Janet, yes, if not 50 times a day!