Tuesday, April 10, 2007


So. Where were we? Oh yes--Q's neuro appointment.

The Nice Neurologist upped the Trileptal to 3.5 ml 2x/day because he believes that we can get perfect seizure control. This as compared to the occasional seizure which has been clearly related to an impending illness, brought on by whatever bug has infiltrated the poor little guy's system. So far, so good. We also discussed the related issues of feeding, swallowing, sinus stuff. I believe that I brought up my thoughts on the "inflation" of Q's skull--internal anatomical landmarks expanding less since his brain isn't growing at the same rate a typically developing kid's would be. So, I've wondered if his sounding snuffly when he's not sick (typical of PMG kids, I believe), some of his swallowing/gagging issues, not managing liquids well, would correlate to having a throat that hasn't expanded as it might otherwise have. Does that make sense?

The neuro guy thinks that Q is also having reflux. Okay, I thought it would have been controlled by the Prevacid, right? However, Prevacid only affects the acid production, not the sphincters, and since low overall muscle tone would also show up in the sphincters, continuing reflux would also make sense. Plus? He spits up a lot for an almost toddler age kid. This as he is eating only two solid meals a day, nursing for the others.

Therefore, Q's now scheduled (finally) for the feeding clinic and otolaryngology (ear, nose, throat) at the local children's hospital. Hallelujah. I feel like we're managing okay with the Miralax, which the neuro guy tells me is, chemically speaking, more like the molasses or Karo syrup in water cures of days gone by, so not one of the harsh treatments which can only be used briefly and with some risk to the poor kid's ability to ever process food normally. I'm pretty happy about that, too--Q's got enough other stuff to get through; pooping should be the least of his worries, ya know?

What else? Let's see. . . Q is sitting up while propped with hands on knees in therapy. I should be pushing him more here at home, but sometimes we're hardly here and the other times it seems like he's spitting up or just done eating, so no go with things that crunch the tummy. He said a crystal clear, smiling "Hiiiiiii" through his eyelashes at his SpEd teacher. The way he tilts his head and burbles out his greetings just melts a person right down to one's toes. He's been saying "Go" appropriately more and more, and was verbal in wanting more swinging yesterday in OT. What a hoot.

We spent the afternoon at the local wildlife preserve today. It's a neat place. The kids wandered until they were T.I.R.E.D., thank goodness. E and I discussed the scientific name for wolf (canus lupus) and that Latin is such a handy language to know. (Heh.) Q rode in the Kelty pack for hours, coming out to nurse while we rode the tram around, looking at local wildlife. We've been there a lot, but I didn't know that they have two pairs of Trumpeter Swans (cygnus buccinator) and that they have cygnets every year! Woohoo--we'll be heading back in a month or so to see what's up. Ever read The Trumpet of the Swan? (E.B. White is another author who could've hung around longer, writing 'til I got tired of him. Which would've been, uh, forever.) We've read the book two or three times and drove by the Red Rocks Lakes the summer after the first reading. It's burned into my kids' brains. They were all agog over the swans today.

Spring stumbles along here, in fits and starts. The violets are bodacious and flirty, the grape hyacinths leggy and so blue. The fourteen chicks are getting prettier every day (apparently leaving adolescence in the dust) and in ever more desperate need of the half-built chicken tractor on the driveway. The structure has waited for a dry (or drier) day and tomorrow is looking good. I'll be swinging back by the store for more lumber because I totally forgot that I was putting a hinged lid on the thing so we could get to the eggs more easily. At least that problem is a simple one to address. We're planning to electrify some portion of the structure to deal with predators. Someone should make a movie as we get that part worked out, dontcha think? Guaranteed cheap entertainment.

The huge red rhododendron in front has gone from looking like someone's growing a gazillion tubes of Rita Hayworth's lipstick, to fat, pushy blossoms that bobbed against a blue sky as we hunted eggs on Easter. It's the first time I remember there being any sun on Easter here, but it only lasted a few hours. The rhody, now that it's in full display, looks like it's borrowing it's color from the friendly red front door. Now, as the forget-me-nots brace themselves for the whiplash that surely accompanies their frenzied, periwinkly bursting forth, it's supposed to freeze tonight. What!? The roses are thick with smooth, new, red leaves, the white bleeding hearts are singing themselves silly in a tangle of greens, the lemon balm, sage, oregano, yerba buena, Russian sage and lavender are sending tight new foliage out in hopes of taking the garden by storm when our backs are turned. The lily of the valley is staging a stealthy revolt in hopes of securing the lawn as it's new digs. The peonies are sticking up their red stalks, hearts on their sleeves as they sneak out leaves here and there. It can't freeze.

In other news, I have an appointment with the same derm guy I saw way back in high school. I've got this, this--thing--on my leg. (Lower right leg, three fingers above lateral maleolus.) It's been there forever, or at least ten years. When I was pregnant with K, a different dermatologist did a punch biopsy on it. It turns out to be quite vascular in nature and punching it wasn't the best choice. I required stitches to stop bleeding. A certain someone once looked it up and thought it looked like a blue bleb nevus. I wouldn't ordinarily disagree with a certain someone's diagnosis (he's usually amazingly thorough about these things) but I doubt that's truly it, mostly because I don't have the significant GI issues which typically accompany a blue bleb nevus, at least not that I know of. So I'm planning to go in now because a.) I have insurance and b.) it has gotten steadily larger despite the biopsy and now has other superficial looking smaller veins around it. The skin over it has become thinner and thinner, the margins have become more and more tender, and if I were to have, say, an accident while shaving, it could make the Psycho shower scene look downright tidy (not that I've seen the movie, mind you). So it would seem it's time to get it dealt with.

(Swerving wildly in topics. . .)

I also wanted to mention the church service we had for Easter. Besides being an Easter service, it was also communion (all the renewal, restoration, resurrection ideas piled up together), which can be an interesting undertaking with kids. (The very best communion ever was when we were just four, with the baby #3 on the way, and the mama and the papa took turns with the kids helping wash the mama's and papa's feet. I leaked tears during and after that--it still makes me well up. G and E were so eager to get into it--little kids taking on, engaging in, understanding, the ordinance of humility. Engaging, assisted by their parents, in the beginnings of owning their own Christian experience of this ritual celebrating humility. Wow. On so many levels. Wow.)

Anyhoo, this time church was lots of music, choral (Rutter) and congregational (lilting, soaring hymns). The footwashing came first, meaning that there wasn't a lot of getting up and moving around--a cool variation on the usual order. We missed that part because I only had something less than five hours of sleep the night before and was having trouble getting us out of the house in a "timely fashion" (a phrase sure to come up in the children's therapy--the therapy they'll be having in college to help them get over all I've done to them). There were little scripture readings, short homilies, more singing, big drums and trumpets and trombones. WOW. I had the kids following the service in the bulletins, had them partake in the crackers and juice (which all but S totally get the significance of--she just wishes the portions were larger), had them singing along. It was awesome. Truly the neatest Easter service I've ever attended. Q, as usual, got into the music body and soul--talked to the organ and prayed right along like he does at home. (Heh.)

(Another wild topic swerve. . .)

The question of an Asperger's diagnosis for G has shifted a few degrees in direction. The psychologist suggested I read up on Nonverbal Learning Disability. Between the two, a nail seems to have been hit on the head. I don't know what this means, except it's confirmation that I'm not crazy. Which is pretty important all by itself, I suppose. I spoke with G's OT for a while on the phone last week. She is really special--just right for this job, I think. That G likes her is just too cool for words.

So that's how we are here. Tired, oh so tired, right down to the bones of us (me), but happy about it. It's a tired well earned, a tired that's speaking of energy well spent, in a family of people well loved, amidst a riot of burgeoning spring flowers. And the food's good too. (Think strawberries and chocolate ganache with croissants Easter morning. Yup.)

Off to read more in Emily of New Moon. That Lucy Maud was one prolific lady.

'Night all. Hugs, prayers, blessings and bliss to you and yours. Hmm. . . Smell the rain?

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