Wednesday, August 26, 2009

Summer Reading

Hope has always loved books but this summer she seems to be even more book crazy. I have no idea if she loves the pictures or if it's just about turning the pages. Lately she's been touching her nose to pictures she especially likes (the one above is a picture of a red-haired little boy. Her first crush maybe?!????). It's too cute.

In other news, we got her ankle-foot orthotics last week and she seems to be adjusting to them well. They're not too big or bulky, though I did have to get new shoes a size bigger so they'd fit inside. We also checked out glasses this week. They weren't a lot of options for small babies but we did find one set of frames from Fisher Price (who knew Fisher Price made glasses?) that seems to fit the bridge of her nose nicely and go right around her ear. She looks like a little professor in them. Hope thought they were hilarious and promptly yanked them off.

Happy Wednesday!

Saturday, August 22, 2009

Mark your calendar (if you live in Metro Detroit)

It's official: We're FINALLY hosting a walk to raise money for the CdLS Foundation.

This has been a dream of mine ever since Will died nearly five years ago (I actually picked the date, Oct. 11, because Will would've been 5 on Oct. 15. I get a lump in my throat just thinking about that). I got close to organizing something one year -- found a location, pulled a permit, talked to the foundation about liability insurance. But for whatever reason, I couldn't pull it together. I don't think I was ready emotionally.

But with some prodding from a good friend and my supportive hubby, I finally decided to just DO SOMETHING this year. It may not be a 5K but it's a start and that feels good.

So here it is: The 1st annual Walk for Will & Hope. It's going to be an informal 2-mile walk at a park near our house, Stony Creek Metropark. There won't be any clocks or mad dashes to the finish line. And there's no registration fee. We'll be accepting donations only so all people have to do is show up, walk for a good cause, and donate as much or as little as they'd like. Our goal is raise $1,000. People who can't make it can also write a check and mail it directly to the foundation: Cornelia de Lange Syndrome Foundation, 302 West Main Street, #100, Avon, CT, 06001 (Put Walk for Will & Hope in memo line). We also may have sponsor sheets that walkers can take to work or wherever and ask people to pledge a certain amount per mile.

I just wanted to share. If you're in the area, join us! We'd love to see you.

Tuesday, August 18, 2009


Good news about Hope's peepers: They're not as bad as we thought. 

We had her six-month check-up with her opthamologist, Dr. What-did-you-say-Sonny?, on Monday and apparently Hope's vision has IMPROVED. He said that as the eye develops, that can happen. I'm not sure if it's that or the tests aren't that accurate. Basically, they dilated Hope's pupils with drops that also paralyzed her focusing ability. Dr. What-did-you-say-Sonny? then flashed a small light into each eye while holding a lens of different prescriptions into each eye. I wasn't quite clear on his explanation but he said when something-or-other is neutral, he can determine what prescription Hope needs.

Regardless, according to the testing Monday, Hope is nearsighted and is -4 in both eyes, which is about the same as my prescription (she was -6.5 the last time we saw him). Anyhow, I'm going to make an appointment with an eye place today to get her glasses.

I have a feeling that getting Hope's glasses will be the easy part. Getting her to actually WEAR them on a daily basis will be a whole different story.

Tuesday, August 11, 2009

I love...


We've been working hard on transitioning Hope from baby food to table food. And while we still have a long way to go, we are definitely making progress. Last week, I made pancakes and she ate about three pieces -- one of which she picked up on her own! That's big news around here.

Of course, she picked two more pieces and proceeded to bang them together but that's OK. Baby steps...

Monday, August 3, 2009

New tricks

Rumor has it that summer is in full flower, although you wouldn't know from actually living through it. Word is the Mercury climbed all the way to 70 degrees Thursday. Pity. We were too busy warming our cockles by the wood stove to pay much attention.

Lousy weather or no, we have persevered, barely having a moment to tend to our crab grass  lawn or rotting pit of algae and muck koi pond, much less the blog. Indeed. Like it not, Hopesy and company have become full-on, 24-7 party people. 

We got back a week ago from a delightful week with my family on the coast of Maine, searching for the perfect seafood platter, swimming, kayaking, playing on rocks and watching from the deck of our rented ocean side home as picture-postcard lobster men pulled their traps to pay the note on their BMWs. We liked the sunsets, sipping wine and vistas of Boothbay Harbor. Hope liked that the house had a mammoth coffee table that she could cruise round and round.

We've become adept moochers, spending the weekend shamelessly cajoling invitations from friends with pools (Have we told you, Deb and Louie, how much we love your company?) and those with boats (Anne, Jeff, you mean the world to us). Between the begging, we're pleased to report that Hopesy is a Class A water baby. We took her swimming twice this weekend. Both times she giggled with glee, rearing back her head to reveal her burgeoning set of choppers.

The choppers -- Li'l Jimmy Carter has even more front teeth coming in atop the ones Mo chronicled last week -- have her a bit crankier than usual. But she's still super company, and is developing a nifty repertoire of tricks. She began cruising days before the Independence Day and now that's all she wants to do, adroitly turning corners and even beginning to hold her own on the Look Ma No Leaning Scooter Thing-a-Ma-Jig scooter that Hope's physical therapists loaned her to get her walking. For weeks, she walked tentatively, needing us to guide her hands and she walked, frequently stiffening her back and refusing to go farther. Now, she's making circuits in the house. Stopping, though, could take more practice.

More good news came last week from Dr. Spitenup, the wily gastroenterologist who speaks in Zen riddles but proclaimed himself so happy with Hope's weight (about 13 lbs.) and progress that we don't have to endure his interrogatories for another six months. That's a record.

So we're happy campers. Now, about that crab grass...