Tuesday, May 22, 2007

Gore (of various types)

Well, the dressing/packing changing is wretched. My aunt, an RN (with her master's--an awesome former rehab nurse), is doing it for me every evening. Blessings on her. I'm fine throughout most of the day with just ibuprofen or nothing at all for pain (unless the dressing gets stuck and shifts), but the messing with it requires the big guns. My gratitude list currently includes Vicodin.

It would all probably have been much easier to handle had I been at all prepared for it. But a yard of stuff coming out of one's leg, followed by little spurts of blood conveniently moving in time with one's pulse is apparently rather too much for me. I nearly lost it. Really, really lost it.

Let's move away from that icky topic, shall we? Okay then.

Court was yesterday. I'm happy to have it overwith, hopeful that good things will come out of it. What to say... I'd imagine that there are some unhappy people out there right now. My comment on that? I guess there are consequences when one chooses to behave like a jackass and flout the law. Frankly, it's too bad that, just in general terms, more real consequences for real bad behavior don't get applied immediately. (Here's the disclaimer...) Not that that has anything to do with this. It's just that the principle of cosmic justice is lovely--it just takes so long. Perhaps I should get more patient.

Thanks for your thoughts and prayers. We're off to therapies, piano, and gymnastics. Wheee!

Have a bee-ooo-tiful day.

Friday, May 18, 2007


Well, the thing is gone. Hooray! Apparently, it was a sebaceous cyst. (gak.) I'm fine, the leg hurts, but good scrips are helping with that. It's all good--but I haven't done the first dressing change yet, so that could change. He was planning to excise about 3cm, so, ya know, yuck.

Reflections from the experience? If you ever need outpatient surgery, I'd happily recommend this place. The folks are really on top of everything, kind, sweet (very tolerant of my excessive post-anesthesia chattiness), and there's plenty of warm blankies to counteract the table which is apparently stored in the freezer overnight. I think that anesthesiologists are perpetually walking around with the best karma. What better job than to be always providing pain relief?

My mom took yesterday and today off to be here and help. Aside from getting to spend some time with her, which is always nice, it's really good to have an adult around that's ambulatory and able to drive (narcotics are a little inconvenient that way). I had friends here yesterday to haul me there and back and to help with school related stuff. It's all going peacefully and well.

Today we're going to do some school, Q will go to therapy, and I'm going to go tackle that dressing change, now that the Vicodin dose seems to be kicking in. Blech. I won't gag you with the details, but the prospect is fairly yucky. Think nice thoughts for me, will you? Thanks.

Have a lovely day. (smiling and waving)

Tuesday, May 15, 2007


Business first: Thanks for your thoughts and prayers. I'm feeling steadily better. (yay!) We're back in court next Monday. Could be a big deal, it's hard to say. Thanks for your continued support. I just want the best thing to happen for the kids, and it would be nice to have less stress. Now, on to the more fun things.

Last week, we were taking my mom to pick up her newly repaired car. After my mom invited G to ride in her car to our next stop, S, ever eager to do what the big kids do, hopped up out of her seat and said, "I will!" I started to say, um, okay, but before I could get anything out, she says, "It's okay, I volunteered."

So we're driving to co-op yesterday, headed down our famously twisty hill (aka: the race course, the roller coaster), when the kids spot a hill full of wildflowers. "Look!" says E, "A meadow!!" "Oh," says S, "how pretty..." Sighs and rapture. Around the next corner, "Look!" says S, "Another meadow! Of trees!!" Pause. Silence. E says, oh so very gently, "S. We call that a forest."

We get home last night and it's time to head straight for bed, since we have a tumbling show at a school this morning and of course, have chickens to feed, piano to practice, yadda yadda. So I'm shooing the very tired crew off to bed. S has been to the bathroom for the last time and is almost ready to sleep, but she's suddenly hungry. Ack! Would she accept a piece of toast and a little glass of milk? Yes, but "You're going to have to hurry, mama. I'm starving and if you don't be quick you might find me dead in my bed."

Belly laughs are my abs workout.

Saturday, May 12, 2007

Ask and it shall be given

I'm asking for prayers.

I'm trying very hard to be well, despite the throat thing I have going on right now. I'm supposed to have the thing off my leg on Thursday, which will require anesthesia and will therefore be a no go if I'm that S word I'm trying not to be. Rescheduling all that would be difficult in the extreme. I've taken some Airborne and will be shooting for more sleep tonight.

Actually, that brings up another issue: despite Q sleeping fairly well, considering, I'm suddenly not. I'm terrifically tired, but once awake with him around 6 or so, I am so wound up, for lack of a better term, that I can't go back to sleep. If I could, I'd have at least another hour or so. (Wah) Of course, that brings up the third thing.

There's more court on Monday morning. I'm praying for cool heads, wisdom for the judge, the best thing to happen. And patience and resilience for me.

What a pretty day today was. The flowers are just bursting. The pink columbines look like ladies' skirts with crinolines, bobbing and turning in the wind. The bees are hovering around the honey melon sage that my lovely mother-in-law brought me for an early Mother's Day present, acting like, for all that sweet scent, there sure should be some blooms to plunder. K's pink calla (she bought it herself) is snuggling down into the earth, sinking it's roots into sweet, dark dirt and blooming like it means it, pinker and pinker. The clematis has become positively virulent, crawling out into the lawn in search of new things to climb. Once redirected to the cedar, it has begun to make a run for the top, as if seeking escape from the confines of earth. Somewhere in the trimming of the dead stuff the tenant-less wasps nest got knocked out of the buddleia, much to the relief of the children (and their mama). They know more now about the workings of paper wasps than ever before, fascinated with the doings of the great outdoors. There was a bunny grazing on the lawn again this morning, breakfasting on new shoots of grass. We had rain late in the day, good for the morning glory starts, the just planted impatiens and Corsican mint, lemon thyme, and that blue flower, the one I can't remember over the chatting behind me... not lantana... lobelia. Yup. The peonies are suddenly tall and heavy with buds, the poppies all fuzzy and threatening to burst open any second, but still, not quite, waiting, nope, just another minute... Maybe they'll get soaked in the rain and not be able to contain those scarlet petals any longer. I can't wait. I'll post pictures.

This is, as I've said before, a beautiful place. Off to finish A Door in the Wall. Another good book with a great premise: there is always a way. Always.

Thanks for thinking of me and mine.

Feeding clinic

I was going to sit and write about what I learned at Q's PT yesterday, but then this explains it all. I find myself a little thunderstruck. Not so much by the terms as by the parallels in diagnosis between the little guys. Look at the pictures while you're over there--he's doing some cool stuff.

About the feeding clinic. I was hoping to go there and have, if not all my questions answered, at least addressed and sort of drilled down. To be fair, the professionals are very, very good at what they do. I think they just weren't expecting that I would already have done much of what they would ordinarily suggest or that I would know some of the things I did or that I'd have, for example, specific concerns about how to maintain a high nutritional standard for a little punkin who's transitioning from nursing, which has served him exceptionally well both in brain development and motor skills, to soft solids. Combine this with his difficulty in managing liquids and both thinner and chunkier textures, and the challenge looms large. Then there's the whole constipation issue. Other than the fact that he's having a tough time moving waste, he's not exactly constipated. It really seems to be more an intestinal motility issue than anything. As his trunk control has increased, so has his ability to move things through, so a huge part of this seems to be, again, an issue of tone. The rest may be a combination of a lower liquid intake and his love for all things apple (not the best choice for his digestive system).

What I got from the visit that's really useful? A "nosey cup"--one side cut out in a scoop so that I can see what's happening with the liquids. We tried a different sippy cup and pretty much determined that Q just isn't going to do well with what's available in that department. So I'll use the nosey cup and then hold his chin up so his lips close and he will then (hopefully) swallow whatever's in there.

I've tried some Stonyfield yogurt drink. The nutritionist suggested Danimals. I was so terribly tired, as Q had had one of those nights the night before and I think I got maybe 2 1/2 hours of sleep, that I just hope the horror in my head didn't show too much on my face. Have you read the ingredients list on those things? Sure, they're packaged all cute and in such a convenient size, but why in the blooming heck would I put that stuff in my kid after all I've just asked about how to increase his nutritional quality? After all the supplements I'm taking and label reading and organic food buying, why, unless it was literally the only thing he could ingest, would I do that to my brain damaged child? (Not that there's an argument for feeding the same stuff to typically developing children, but you get the point.)

So far, he likes the cup. Most of the time. He does very well with it when he's thirsty, but when he's had it, he just closes his mouth and pushes the water (or whatever) out between his lips, eyes closed, sort of grinning. As if to say, "Nanny nanny boo-boo, mom. Not gonna do it, you can't make me." Heh. It's good to see some purposeful reaction in this way, but it must be managed, of course.

All three on the team were surprised to learn that Q had only begun solids in January. Apparently, for having only a few months experience, he's doing exceedingly well with tastes, skills. His growth has dropped off considerably. Not necessarily cause for concern, as the curve hasn't dropped too much, but it worries me a little that he's not maintaining the same position. His sibs are all tall, some wearing clothes three or more years ahead of their age in size, so the fact that he's gone from 75th-90th to 25th-50th alarms me a little. His head size also seems to have dropped a bit again--somewhere around the -5%.

I suppose that the only real problem with the whole feeding clinic experience (other than my profound lack of sleep), was that I had high expectations and they weren't met. I'm not even sure what I was really hoping for. A fix would be dandy, of course, but that's not within the realm of likelihood, so whatever. I came away with a referral to a ST closer to home who is, by all accounts, absolutely a miracle on feet. She's completely deaf, highly intuitive, works with an interpreter (signing) and apparently leaves veritable miracles in her wake. I haven't called yet. I'm sure there's a killer waiting list we'll have to work our way through. I'm just having trouble getting over the idea that I'll have one more thing to do, another appointment to drive to. (Banging head on desk.)

At this point, I don't know how much more I can add to the schedule. Right now, we're only home every other Tuesday morning, every other Wednesday and most Wednesday afternoons, Thursday mornings (but Q's SpEd teacher comes then), and part of Friday (we're doing co-op here), and then parts of the weekend (church, hike/walk/zoo, events). I've been looking at the kid's school stuff and I can't figure out how they've gotten as far as they have. (Kidding, sort of.) They're more or less on track--a little behind in some things, a little ahead in others, but set to wrap up the "school year" here shortly. We'll continue a smidge through the summer, as always, and then regroup just before hitting it hard again the middle of August, as always. Their gymnastics will be over soon, so that frees up most of Tuesday and Thursday afternoons. There's still piano lessons, though. I'm blessed to have a piano teacher who schedules them all together so we have a two hour block in one afternoon, and we're set. We do school while we wait for the two who are in their lessons, so it's valuable instructional time with just the older two or younger two.

I'm either getting used to juggling the one-to-one with Q or I'm just going numb. The older kids could use more of me being literally hands on with them--steering them towards what I've asked of them. This follow-through has been difficult to achieve. At Q's age, I would ordinarily be chasing an active toddler rather than hauling 25 lbs. of variable tone lovebug around. He doesn't always get carried, he loves his chair, watches Clifford the Big Red Dog sometimes while I shower and before the others are up, but the needs are just vastly different from a typically developing child his age. I must get back some equilibrium with the bigger kids. This reminds me of the physical/intellectual growth spurt thing kids do. It's often what's behind the behavioral problems we associate with stages (ie: the terrible twos). Growth of any kind usually throws things temporarily out of whack. Even when it's the best possible thing, adjustment must occur. Every time we have a leap in understanding the world around us, we have to shift the lens we view things through. So I guess that's what we're doing with our group dynamic: refocusing.

(I'm tired of refocusing. There's been too much ugly crap, difficult nonsense, loss. I'm ready to be done. Who has that magic wand, again? Come out, come out, wherever you are...)

The end of the month, Q sees an ENT, or otolaryngologist. We'll see what comes of that. I'd like him to see GI sooner rather than later, but whatever. He shouldn't be "spitting up" like he is. He needs to be able to spend time on his tummy without having to squeeze it into the ten minutes between when his tum empties enough to make it comfortable for him and when it's time to eat or drink again.

I am going to try to catch a nap today. We'd be heading off to church except that I'm letting everyone sleep--it's been a bad week for bacteria here. S is on omnicef for an ear infection and we had an adeno virus (according to the very nice pediatrician) that is exceptionally mucousy and quickly went bacterial--not hard when small ones don't move secretions well. They end up kind of providing their own petri dish and nutrient base for growing all kinds of good stuff. So S, K, and Q have all had various antibiotic eye-drops (some allergic to one kind, but not another, etc.) for "pink eye"--not sure that we'd actually call it that, but who cares, the drops worked and we're on the upside of this bout with snot, so yippee!!

After awhile, I'll get them up for breakfast and we'll do a little church at home--singing, reading, maybe some Veggie Tales (for when I try for that nap). My folks are off meeting their brand-newest grandbaby this weekend. He's a sweet little guy, my little brother's first baby, my first nephew. Mama and babe are fine. We wish we were there. But hey, it's a beautiful day--gentle breezes, sunny, everything outside just looks pleased with itself for being there. Awesome.

Hugs and kisses to your little ones.

April flowers

Happy Mother's Day. Here--have some flowers. They've lived and gone from here, but their sweetness lingers and now I'm sharing with you.

Angelique tulips. Scrumptious.

Violets blooming amidst the poppy foliage.

White Bleeding Hearts. I don't know why they fascinate me so, but they do.

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Friday, May 11, 2007


These are the jeans my friend found for me.

And this is what she paid for them.

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How to serve Spaghetti Squash

The hands belong to E. The squash is my own rendition. Ready? Pierce the skin of a spaghetti squash and microwave for about 5 minutes, or 'til heated through. Finish baking in a 400F oven, maybe 20 minutes? While the squash is baking, brown a few T. butter on the stove (cook the butter 'til the solids begin to turn brown, then remove from heat). Find sage, mustard, onion powder/granules, nutmeg, salt. Combine say, 1/4 t. sage, a pinch of dry mustard, 1/2 t. onion, a pinch or so of nutmeg, 1/8 t. salt (or omit salt). When the squash is done, remove and slice in half lengthwise. Scoop out seeds and discard. Place cut side up on a plate, drizzle with the browned butter, sprinkle with seasoning mixture, and cover liberally with Microplaned myzithra cheese. Serve immediately with a nice salad, some good bread, and try not to eat the whole thing yourself. Slurp. As my mother said, "Why eat spaghetti squash any other way?"
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Sunday, May 06, 2007

Things I could use

(Pre Post Script: I forgot to add my disclaimer. Oops. Here 'tis, then.....
I adamantly do not expect you personally to do anything about this. This is not a request for stuff, per se. Rather, it is an alert: If you have something matching a description here or know of someone who does, or know of someone who knows of someone who does, let me know. I'm putting my wish list "out there" because God's universe conspires to deliver what we ask for and seek. I am blessed to have knocked and had doors open, asked and received, sought and found what I and the kids need, though often what meets the need is shaped differently from my initial request. Still, the need is met, my kids thrive, I am blessed. That is all.)

Piano sheet music for Bruce Hornsby's Mandolin Rain.

Nine hours a week of miscellaneous household help. I have a dear friend who has come when she can. She's awesome. She's perfect--her background is early childhood ed., she works harder than anyone I've ever met, she makes fantastic sandwiches, and she's nice. But she has her own family, as do other folks who've dropped in to help (my aunt, friends, my folks work--you know, people who also have their own lives). Meanwhile, since I'm flying solo, which would be plenty busy all by itself, and doing therapy things, kids' lessons, school, walking the kids through their chores, writing here, reading and studying to stay current in my field(s) and investing in the actual relationships I have with my kids (trying to have some fun with them), I often find myself short on time for all the things I'd like to have done. So if you have a dish fairy or a queen of washing down the window-sills, tell her to get in touch with me, would you? Thanks. While she works, I'll go file some stuff and fill bags with outgrown clothes which can then leave the house and be gone forever!! Hear me laughing maniacally? (It's okay--I'll get over it. Heh.) This help could also come in the form of a big brawny guy who would help me move stuff. Though of course we would then find a manly title for him. King of the Furniture? Prince of Construction and All Things Heavy? I'll work on that.

A laptop (or something). I seem to have overwhelmed the memory of this poor computer. The compact flash driver is cranky because I don't really have enough room for 3GB of pictures, let alone the discs I'd like to rip (for when the kids have squished the original and I would cry except that I have saved a copy on the hard drive and can just burn a fresh one--ha!). So I have not a clue here as to what I need or how much it would be or where I would get the money, or anything, really. I do know something about what I want. You're surprised at that, aren't you? (heh) I need it to be, well, probably a mac ibook. I want easy, lots of fun things to do, easy, DVD burner and drive, compact flash drive, simple desktop publishing, lots of memory (kids will use it for school software) and easy, easy, easy. You'll probably find this under your bed if you look now. Go ahead. I'm waiting. (tap, tap, tap) No? Hmmm. Look some more and let me know--it could be hiding in your flour canister (carefully wrapped, of course.) Seriously, though--any thoughts on this are appreciated. By the time I can afford to do something, I'd like to have my list of features/requirements all worked out.

A twelve passenger van. It should be new, free, and painted an iridescent purpley-blue. Like fairy wings hiding in hydrangeas. Also, it must have headrests, side curtain airbags, air vents for each row, a tow package, and get 40 mpg. What? Not possible. Oh please. Anything's possible. (See next item.) Toyota has been selling a hybrid version of the Sienna in Japan for awhile now and everyone there loves it. Well, who wouldn't? It's comfy, drives well, is safe, nicely arranged, and it gets 40 mpg. I'd happily settle for one of those. My problem is that I'll soon enough be needing to allow for some sort of a mechanical lift for Q (swallowing hard). While a lift would certainly fit into a mini-van, it rather eliminates the space for the seat belts I need for everyone else. Also, what happens when one of them decides to take up the cello? Or fishing for prize-winning marlin? Or needs to haul their new garage band or string quartet to engagements? Food for thought, I know. Our current transportation cost me a lot of money last month. Money I don't have to begin with. Otherwise, I have no complaints--it gets consistently over 20 mpg (loaded with kids and stuff, city/hwy combined), though it is beginning to show wear. At nearly 140,000 miles, I suppose it's to be expected. Anyway, if you come across a van meeting the above specs, do be in touch, will you? Thanks.

I was going to post about needing curriculum for the coming school year. I have a rising seventh grader, a rising fifth grader, a rising second grader, and one who should be doing kindergarten work, but since she's done all that in her quest to "do school" with the big kids, I'm going to start sneaking in first grade stuff and just not tell her. As you might imagine, the good stuff can be quite expensive. Without divulging too many details, a friend and her lovely hubby who knew of my financial, erm, concerns, have just dropped a huge chunk of what I need for my eldest out of the sky and into my lap. She emailed me last night and I'm still reeling. I don't know what to say. "Wow" is good. "Thank you" is appropriate. But somehow, well, neither is quite enough. While there are still definite needs here and no apparent manner in which to address them, I am stunned at the enormity of this gift. Not just the curriculum, though that's significant, to say the least. But most of all, the friendship which sponsored it. I am blessed.

Prayer and propping up (also known as "oomph"). I have a "procedure" coming up. I saw a vascular surgeon on Friday who kept saying "I don't know what the heck that is." That is not comforting, sir. It's coming off/out/whatever. The dermatologist called it an angioma, someone else diagnosed it years ago as a blue bleb nevus (it doesn't look like that anymore), the punch biopsy I had done about seven and a half years ago came back "normal", which it clearly isn't and wasn't, but that derm lady moved away, so who knows where the records went. I need to call the nice doc back and ask if I should really be seeing a plastics person, since he indicated that once the thing is gone I'm likely to have quite a "hole" there. So there's that. There's also the fact that, while I feel I can never really do enough for Q, I'm tired and getting tireder. (Don't tell my kids that I just wrote that--they'll never let me live down my improper use of the form of "tire". Sigh.) I need sleep, yes, but also some refilling of an unnamed well. I read, pray, study things spiritual and pragmatic, but that's not it. Hauling everyone around in a timely fashion is wearing me out, probably in part because I sometimes feel like I'm in a constant state of mourning. Life surely is what it is, but I am sad at the loss of my expectations--of a happy, secure home and hearth in perpetuity, of healthy and relatively uncomplicated childhoods for each of my kids. Looking too closely at all this makes me nauseous, mostly because, try as I might to get the little colored squares (they seem to grow) to line up each on their own face of the big black cube, there's no sense to be made of the pertinent issues here. And I'm feeling the strain of trying to get those gigantic squares to just move, already. A friend calls it "pushing the river"--lots of effort put into something one doesn't actually control. So I'm going to put more effort into just riding the wave, doing the next thing, worrying less and just putting one foot in front of the other. Thanks for thinking of me.

I'll be back to discuss the feeding clinic visit and more.

Happy Sunday (smiling and waving).