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.

Overheard

K, hollering, "The biggest p*nis in the world is as big as an elephant!"

G's rejoinder: "No it's not! It's the size of my pinky!"

WHAT ON EARTH? Adrenaline surging, running, listening for clues...

They were arguing about peanuts, of course, and K had her mouth full of apple.

Oh, thank God. At least we can hold off on that particular discussion 'til we hit the whale section of biology.

They've already moved on to arguing about the largest planet in the history of the universe.

I like it here. (grins)

Loose ends

Here is a bunch of unrelated "stuff," some of which I've meant to post for awhile...

The Guy Thing (and it's guy-ness)
While you may not experience the same level of connection with the book Wild at Heart that I seem to be having, I hope you'll indulge me for just a little more discussion on the topic. I know several families who are really in the throes of heck right now. The dynamic seems pretty typical. She wonders what happened to the man she married, he wonders if this is all there is. In the middle are the punkins whose very presence is, for the moment, keeping two adults who are steeped in longing locked in, committed, for better or worse. They crave the better while seeming only to be able to keep their heads above water, fearing the "worse."

"'I'd love to be William Wallace, leading the charge with a big sword in my hand,' sighed a friend. 'But I feel like I'm the guy back there in the fourth row, with a hoe.' That's a lie of the Enemy--that your place is really insignificant, that you aren't really armed for it anyway. In your life you are William Wallace--who else could be? There is no other man who can replace you in your life, in the arena you've been called to. If you leave your place in the line, it will remain empty. No one else can be who you are meant to be. You are the hero in your story. Not a bit player, not an extra, but the main man."

I don't know how a guy would receive the above. To me, it sounds all hopeful and exciting, full of promise and maybe even adventure. But then I'm a girl.

In case there are any guys reading, especially anyone who happens to be struggling with the above, let me just tell you this: your wife loves you. No no--she loves you. Whatever else you have going on between you, she is still the lusty Viking figure on the prow of the ship, she is Eve in the Garden, she is your private dancer. She loves you with the tenacity of Boudica, the temerity of Ruth, the wits of Rahab or Tamar. She loves you with the ferocity of every self-assured, tantalizing maiden who ever walked the face of the earth. She loves you like an earthquake, like a warm, dr-enching, in-sin-u-a-ting rain, like nothing you can imagine (go ahead--try). She will fight for you, beside you and with you. She has rather specific aspirations where you're concerned--to tend you, care for you, kick your hiney if it requires it, then nurse it back to glowing health. Your wife will go with you to the ends of the earth, the universe. She is that woman in the Song of Solomon. Look into her eyes, hold her gaze--she knows you, she wants you, and you are her hero. How can I be so sure? She told me.

Go on, get outta here. Just draw the shades, please.

.............................................................

Hi.

How are you?

Fine, thanks. And you?

I am well, thanks for asking. (tapping fingers) Anything new with you? Is that an echo I hearhearhear? Hello-llo-llo? Huh. Well, since it's just you and me left here, I'll catch you up a little.

The Finger (and it's "ribbon")
The silly thing finally stopped bleeding about four days in. Since the cut still tries to pull apart if left to it's own devices I still need a band-aid, but it's much, much better. Save for a weird combination of numbness and pain, I'm closing in on normal. I've worked hard to baby it (yeah, right) because a mama needs her hands. This is my cautionary tale about knives, I suppose. Always follow your rules for kitchen safety (I wasn't holding the lime properly) and never, ever cut with hands covered in citrus juice. But then we covered that part.

The Gas Tank (and it's diesel)
A few days ago I realized that I never posted a follow-up to this story. (In case you haven't read it yet--spoiler alert.) We hadn't really run out of gas at all--the fuel pump went out. So I was saved from my folly by malfunctioning equipment. The irony in that makes me giggle. Of course, as I've since had pointed out to me by dozens of fantastic folks, it's a lucky thing that it wasn't gas into a diesel engine because that would have been a real mess. This way, the engine just had a little extra lube. Funny that most of the people who share this with me are men--the women seem to have mostly learned this the hard way. Which is of course my personal favorite way to learn things.

The Court (and it's, uh, courtliness?)
We're back in on Thursday (9/20). I'm still praying for cool heads, clear thoughts, and the very best thing for the kids. I cannot imagine having to go to work every day in the family court system. Still, I bet they get to contribute to miracles--sometimes there are kids who need rescuing from things we cannot fathom. I know one such family who could really use your prayers right now. For those defenseless babies, I'm glad that there are dedicated people who show up every day to hear those hard things and then make fearless decisions, while praying that they're the right decisions. And absolutely prostrate, I thank God that my kids are not in that group.

The Q (and his cuteness)
With only two more molars to come in, things are looking up. Throw a party--that horrid bump is gone and in it's place is little ridges of tooth. He had a banner day today in OT--babbled, reached, pushed up with his feet to catch himself when he was slipping forward off the seat. I have a new drink from the pediatrician to try with him--it packs in a whole 1.5 cal per ml. This is huge. I gave him almost half of one of the little juice box-like containers the other night. It was okay, but he seems unimpressed by the French Vanilla flavor. Funny, I can suddenly hear his daddy saying that with a silly nasal accent: Frrraaaanch Vaneeeella. (smiles) The boy went down late last night and got up at 4am. I had two and a half hours of sleep last night. What am I still doing here?

So let your beloved know just how much he or she really is to you. Unless, of course, you were in the group who left earlier. Ahem. In which case, you've pretty well covered that.

Good night.

Interesting

"If these children had been kept in institutions or treated at home as 'vegetables,' there can be little doubt that they would have turned out exactly as predicted," Shewmon says.

Hmmm. I'm thinking about this. (Hat tip to my dad for the link.) I don't know what to say. I don't feel qualified to summarize, really. It takes me a few days of turning this stuff over in my head before I can discuss it, never mind intelligently.

I wonder if this phenomenon (is it a phenomenon? or just a realization of what's long been true?) explains Q's apparent Cortical Visual Impairment (CVI)? Which, now that I think about it, I meant to ask the neuro guy about at his last visit. Q goes back in November, so I'll bring it up then. If I remember correctly, the notes from Dr. Dobyns on the MRI (see link for more on Dr. Dobyns -->) mention Q missing some of his cerebral cortex. I'll have to go back over it.

Hmmm...

Mmmmm...

These are Mountain Ash berries on scrubby little bushes. I didn't know that they came in anything other than plain bright orange, like the big trees have. The brilliant cerise color just pops right out of the landscape, no? This reminds me of the time in Bible class when a couple of us got the non-stop giggles and were sent outside to pull ourselves together. Not that going outside helped. Why? Because we'd been watching the pretty little birds outside flitting about. (Disney music playing in the background.) Flitting and flying, lighting on the branches. Or missing the branch entirely. Or falling over while standing on the ground. Or nearly hitting the windows but veering off at the last second. Because they were drunk on rather old Mountain Ash berries.

The "destination" of the hike was worth it. The journey provided plenty of berries to spur us on. Slurp. I hauled Q on the way up, a friend hauled him down. A lucky thing since S, little trooper that she is, needed a piggy-back ride for a good half-mile at the end. My mom shot most of these--I'm so happy she has her camera.

Hiking rewards

Something to do

Oh my. Go look at this and see what you can do to help.

I received an email from a friend who has adopted through this organization. Their family has been changed so much by their experience. Even if you feel you have nothing to offer of yourself right now, think about other people you know, and other people they know. Perhaps, if each of us tosses a stone into the pond, the ripples will reach out far enough that some really grand things could happen for these children and their caretakers.

Looking at this site makes me wish I was independently wealthy or something. Seeing those sweet little faces... Well, I'm perfectly busy here and all, but my arms are sort of reaching out involuntarily.

Sigh.

Go look and then share. Perhaps a miracle will come of it.