Wednesday, September 26, 2007


I thought I'd write about the events of the day, but S has wrapped paper tape around her leg, which has some hair growing on it, and she needs it to come off, so cover your ears.

There. Are you deaf now?

Why not? I am. Hmm--somehow I doubt she'll be decorating herself with tape again anytime soon. Poor thing. Gotta love that Dermoplast though. Whew.

(Insert bedding down of kids, medicating Q, several loads of laundry.....)

Now for the update. Q's ear has less crud coming out of it today, but he hasn't wanted to eat much, even nursing has at times been too much for him. Grandma got some of the Just for Kids down him, so there's a few calories anyway. The pediatrician wants to see him back for sure three weeks from Monday to recheck that membrane.

I forgot to mention that the one specific recommendation from the neurodevelopmental clinic is that Q have good and increasing access to adaptive technologies. He has a switch device. We've used it to record my voice saying, "Where's Q?" and "Peekaboo!" He played with it for several minutes at his best time, even going back and forth between the switches to hear the messages in the right order. The nurse practitioner we saw yesterday noted that he's obviously vocalizing well, even when feeling under the weather, in an effort to truly communicate. (Yay!) She would like to see growing emphasis on this for him, as she foresees him using more complex devices as he gets older. (Yay!)(Gulp)

I feel like we've been pretty lucky so far with most of the services and therapies. DDD has provided an indoor platform swing and the switch device. The rotten thing at this point is that I hear the whole department is seriously in the red, so not much hope of getting the bolsters and perhaps even feeding equipment that Q could certainly use.


The funny for the day happened yesterday. I got home from the trial by fire that is an appointment with a new medical office (seriously--it's like giving a three hour lecture without notes) and felt like I could do a face plant into whatever soft surface happened to be nearby. My mom was home and told the kids to leave me alone for a bit so I could rest (smiles). This is like an invitation to S. She came in and asked if she could nap with me. Awww. Sure. But you have to be quiet, no wiggling, close your eyes. She assented, dove into my neck and shut her eyes. Two seconds later she popped up and said, "You know what would be tasty?" No. What. "A big bowl of cereal with breastmilk on it." Pause. Ummm. Okay. "I mean, I know it's just for babies. But don't you think it would be nummy?" Uh.....

There was no nap. Just lots of giggles.

I thought it wise to let G sleep today, so he missed his piano lesson. After a shower and some blowing of the nose he felt enough better that we kept the orthopedics appointment. The nice ortho guy was great with him--asked good questions, made good points. The upshot of his opinion? That G isn't so tight that he needs surgical intervention. After all, surgery is something that can most times be done later, but once done can't be undone. In this case, he'd choose to be conservative. Since G can run, on or off toes, and run fast, since he can stand flat on his feet, since he can do pretty much everything else physical reasonably well (though sports are mostly not his thing), he falls into the "mild" category. G, when faced with the prospect of eventual surgery vs. reapplying himself to his stretching, picked the stretching option. Smart boy. We'll think about this again in six months to a year, G's OT will keep an eye on him, and we're on to other things.

I hope G is feeling 100% better soon so we can once again experience his love of all things science. A chemistry book came in the mail today and he was just a sad puppy and didn't want to read it. This is so not him. Poor baby.

Speaking of books and mail... Some sweet angels have been at work again. (blushing) I now have a beautiful coloring book of birds for E (though we're all becoming de facto birders--lots of good material here), the aforementioned chemistry book for G, and some music for moi. This makes me want to dance and squeal like a little girl. So I shall. Pardon me.

There. All better. The kids will love the music too, but I'm so happy to have it! Thank you, thank you, thank you. For your continued support of our little crew here--the prayers and more are so hugely appreciated.

The poem that came with the coloring book (author unknown--to me):
I heard a bird at break of day
Sing from the autumn trees
A song so mystical and calm,
So full of certainties,
No man, I think, could listen long
Except upon his knees.

Sweet dreams, lovely people.


Carolyn said...

Oh, a platform swing. What dd wouldn't give to have had one of those at home when she was younger. The one at our pt's didn't have a platform ... more like a sling at the bottom. She'd get in there, twist the swing around and around until it was so kinked her arms couldn't reach the ground, then have someone grab her legs and pull her baaaaack ... and then crazily twist and swing and swoosh all over the place. We couldn't watch on a full stomach.

I hope Q likes his!

Melanie said...

We made a bolster for at home. I wish you lived closer to us, I'd send it your way. We are in the process of building Daniel his bolster feeding chair because I refuse to spend $600 on it when I can make it for under $100! I'll send you a picture when were done, maybe I can send you instuctions or something on how to do it