Special

So Q has a perforated eardrum. Poor guy. He had some yellow crud in his ear Saturday night, but it seemed like just a little earwax gone wild. As he was taking ibuprofen for teething pain, he didn't have anything else for symptoms. Yesterday the vision therapy doc called to say that his glasses were in--could we come right away for a fitting? Sure. We headed off. While waiting for the doc, I noticed there was more yellow exudate, this time not so much like earwax. I called the pediatrician's office and described the symptoms--we proceeded directly there after procuring little Q Potter's pair of back-up specs. Although he has no apparent hole, the crud is obviously coming from somewhere, so we're doing the usual stuff for a perfed ear--no baths, no water around the ear, Zithromax and ibuprofen. This morning it was worse. How much yuck can one little guy have in his little bitty ear? The pediatrician wants me to watch for swelling or redness in the area behind his ear and jaw--there was some puffiness and pinkness there. Since we started the antibiotics yesterday, I'm hoping we caught it early enough to keep it from advancing into full-blown cellulitis.

At noon today, we saw an ARNP at the local children's hospital. She's in the neurodevelopmental clinic and specializes in helping parents of special needs kids to manage the resources they have or need. We spent nearly two hours talking with her before deciding that if there was a nutritionist available, we'd need to talk with her too. Wait some more, wait some more... The nutritionist and I spoke about Q's needs and how he's lost about a pound and a half between teething and the hole in his ear and not wanting to eat. The nice lady wrote up a note and plans to get the team to write a scrip for Just for Kids, a liquid supplement that's 1.5 cal per ml. The trick here is to get someone to pay for it. Most insurance companies don't cover anything that's delivered orally, but WIC might. They tend to go only with the company which has provided the contract which equals the lowest cost for formula. Since this isn't formula, I don't know what will happen. I did learn today that most insurance companies will cover diapers after the age of three. Boy. I'd like to not need to worry about that by then.

Sigh.

Tomorrow G has an appointment with an orthopedic surgeon who may recommend orthotics. Splints. Boots to stretch his Achilles tendons. I don't remember if I've mentioned previously that the boy has been a toe-walker almost since he started walking. After this many years, one might imagine how that can shorten those tendons. Tumbling has been quite helpful, but G has been really resistant to the stretches his OT gave him. So. He lost the dorsiflexion he'd gained and returned to a range of motion of approximately 5 degrees. Normal would be around 20 degrees. I'm not sure if the OT is hoping that a serious chat with a surgeon will rearrange his resistance to those stretches or if she's thinking that he's really going to need boots and perhaps lengthening surgery. Did you know that toe-walking can be a symptom of Asperger's?

My head is spinning. Right now, I don't know if we'll keep piano or the medical appointments tomorrow--G's running a fever and the girls are cranky. We'll see what the morning brings.

Today, while I was patty-caking and singing "Where is Thumbkin?" and walking Q all over to keep him entertained, I was noticing the families who nomadically populate a children's hospital. There's the parents with teenagers in reclined wheelchairs with headrests, neatly accessorized with "shirt protectors" (not bibs--too cool for bibs) to block the drool. There are the families with kids in masks, accessorized with a perfectly starched mohawk or an IV pole, or gauze and tape over the latest blood draw site. There are the families eating on the run, hauling a cafeteria tray with the stroller so they can have enough nourishment to remain on their feet through their day of appointments. There are the daddies who've dropped off the mamas and the babies, parked the cars and are now headed into the hospital lugging bags, pillows, favorite blankies and stuffed bears. There are the kids who break your heart while making you grin. So if you have a glass near you, raise it in honor of all the oh so brave and strong and quietly persevering mamas and daddies and punkins. Those people who keep putting one foot in front of the other in order to Get What the Beloved Child Needs.

Cheers.

The following is an excerpt from Expecting Adam by Martha Beck. The author is mourning the Down syndrome diagnosis of her still in-utero son and has taken a drive with her cousin, Lydia, no stranger to crisis herself. Martha's toddler daughter is in the backseat, and the two women have cried and talked and cried some more.

"'Look,' she said. 'Here's what's going to happen. You're going to have one really smart kid, and one really dumb kid. Is that so bad?'

I found myself laughing--not the way my father had laughed, but truly and spontaneously. That kind of laughter doesn't drive tears away. It complements them.

'No, I guess it isn't so bad,' I said. Then I bit my lip. 'It's just so hard to think about the way people will look at him. At me.'

I had read about this in several books by parents of disabled kids. They all agreed that one of the challenges of having a child with Down syndrome is learning to bear the shame of being a public spectacle.

'Okay, so let's imagine the worst,' said Lydia. 'you're sitting somewhere--at the bus stop, wherever--and you've got your baby, like this.' She pantomimed holding a little bundle on her lap. 'Then some fat, middle-aged woman with bad teeth comes over to you and says, "Hey you! Looks to me like there's something wrong with that there baby!"

I shuddered. 'Exactly,' I said.

'Well, here's what you do,' said Lydia. She looked intently at the face of the invisible baby. Then her eyes widened in horror. 'Oh, my God!' she shouted. 'You're right!'"

G'nite.