Finally! After a week of intermittent internet access and hours, at least ten, of phone calls to tech support (Apple–Good, AT&T–Bad) I am back online with a new modem and lots of news.
First, the best news — this week Hope laughed. Two days ago she was looking at Tammy and gave her a big smile and then laughed. It’s a “silent” laugh, no vocals really — if she wasn’t smiling you’d just think she was coughing. Today she had a good laugh at my expense, for what I’m not sure. But she laughed for a good five minutes, I cried, then we both took a nap.
Also this week, yesterday to be exact, we had our much anticipated appointment with the endocrinologist. Hope should be on her Human Growth Hormone in the next month or so, there is still a lot of paperwork to do and bureaucracy to work through. Today I talked to our insurance case manager and she’s already done some research for requirements for covering HGH and PWS is an automatic “approved.” Our goal was to have Hope started by six months and it looks like we’re on track to do that. Hope is now four months and one week. She’s continuing to gain weight, she’s up to 12 lbs., 3 oz. Her snoring is 90% gone, we were never able to get the CPAP to work at home, but it looks as though that is already correcting itself.
We’ve discovered one of the first perks of having a child with special needs, discounted Disneyland tickets! They’re only good for a few weeks in Feb/March but who cares? At $27, we’ll take ‘em. Plus we can get a special pass to go straight to the front of the line. We are such cheapskates…
All in all it’s been a pretty good week, except for all the technical difficulties. Grace has been busy with her swimming, dance, and preschool class and the myriad of crafts and fort-building around the house. Her favorite movie this week is Harry and the Hendersons, we taught her to say ‘sasquatch.’ The first time I showed her Harry, she watched for about twenty minutes and lost interest but the next evening she asked for “the monkey show” — she thought Harry was a monkey. So I put it on and she watched it the whole way through and then had an absolute meltdown at the end when Harry says goodbye to live back in the forest. We kept telling her that it was o.k., Harry was happy living in the woods. All that did was too add “he’s happy” to her tear-slurred monologue. Of course, now that she’s seen the movie fifty times she doesn’t get so emotional at the end and assures us that Harry is really very happy living in the woods.
Also, the poopy list was significantly narrowed down this week to just Papa Gary and Unkie Dokie. It turns out that there is actually biblical confirmation of Papa Gary’s place on the poopy list as Grace pointed out to us this week in her little pink Bible.
that’s all for now…