Well

Look at that.  I missed posting the whole month of July.  In fact, it's been two months.  I don't know what to say about that.  Sometimes I look around and realized that two weeks have gone by and I'm not sure how we've all managed to stay upright and in motion and all, and then I remember to check the laundry.  And yes, there's evidence that in fact we have been buzzing around like that.  Heh.  E's been in charge of that department lately and doing a pretty good job of it too.  More likely, at least when school is in full swing, I remember how busy we've been when I note that the grading has begun to pile up.  Good times.

Onward.  We've had a fun summer.  Spent some time on a lovely little island with lovely friends, then hauled off to a family reunion and enjoyed swimming with cousins, and the bigger four spent time with their dad.  Q made his television debut (SO cool), and concerts - including all the kids getting to see HMS Pinafore.  Q loved that too - he stood at the edge of the balcony overlooking the orchestra pit and tried to help out with percussion.  Then we had the best ever not-exactly-VBS week doing art, science, and food projects.  That visiting kids asked if they could come again on Monday for more (there wasn't more), was the surest sign of success.  I'll post the amazing pictures if I'm allowed to (copyright, privacy, etc.).  We're considering writing a curriculum or outline for what we did and selling it.  It was awesome.  And the people were great too - it was a huge bonding experience for the church with nearly a 1:1 adult (volunteer) to kid ratio.  So cool.

Following that fun week, we slept some and then headed out for some family time with auntie and uncle.  That was so cool - we rode horses (ow and hooray - it's been a long time since I learned to jump little logs and fences), saw a fly-in/out of smaller planes (including one restored by boyhood friends of my dad), and spent an afternoon out on a pontoon boat and swimming in lap-pool temperature water.  Chilly!  So Q did not go in, but he loved the wind and sun (but no pink on him, not even tiny freckles) and the boat flag.  He absolutely howled when he had to leave it on the boat - he loves to have those opportunities to be in charge.  Funny guy.

So what's next?

On more general topics, I'm asking for continued prayers regarding the house situation.  Not much to tell right now.  I spent part of today trying to nail down details.  I'll know more later in the month.

Regarding the kids, we're getting ready to start the school year with stacks of fresh workbooks and empty journals and lovely books like "A Rulebook for Arguments."  It's a little bit like climbing on a rollercoaster.  I have one offspring who is looking into a driver's permit (that thud you heard was me fainting), another who wishes to rearrange the planet to make it function better, one who worked her tail off this summer to earn money for something she wanted, and another who is trying desperately to follow in her sister's footsteps and earn her own fun stuff too.

Which brings us to Q.  I'm not sure exactly how his school year is going to work out.  If he were a slightly less complicated kid, I'd have no problem putting him on the little preschool bus and getting him back again a few hours later.  But he's not that kid.  He has to have good positioning in any chair configuration lest his clothing bunch up and begin to threaten the integrity of his skin.  A looser set-up often results in him slumping over and throwing up because his torso sort of collapses without good support (though this is happening less and less frequently).  He doesn't protect his own head like another child his age might, so I'm not sure about sticking him on a bus in his nifty Bingo chair - not enough head support, I think.  Add to that this:  the school district is looking to have PT and OT occur in the classroom, with the other kids, because they want him to be receiving services in the "natural setting," which for a four year old, seems to be a preschool classroom with a bunch of other kids, all of whom have their own issues.  This makes me a little desperate around the edges.  Q loves those other kids and would happily play with them all day, but there will probably be one less aide in the classroom (budget cuts, you know), which means that there's rarely an adult next to him.  Q does not do screamy kids.  Kids with developmental issues often have screamy issues.  Heck, smaller kids of the more regular variety often have screamy behaviors.  Q cannot get away.  So if he's stuck there, can't defend himself, hasn't the adult help he needs unless there's a 1:1 therapy situation happening - then what?  He comes home fried and doesn't want to go back because it's gone from fun times learning with the therapists and playing sometimes with the kids, to dreading the intensity of the not good parts.  I've seen him flinch at the sound of particular voices after repeat exposure to those persons being unpleasant (yelling is a very bad thing, but screaming and whining just plain sets. him. off.), and I do not want to go there.  So at the very least, there's more to learn before we know exactly what will occur for him.  I'm going to push, though, for more 1:1 therapy time and less classroom therapy time.  Both are certainly useful, but the former is vastly more useful to Q.  And since he's my concern, and not protocol or format or classroom needs, well, we'll see how this works out.

The boy has grown completely out of the stander he's had.  His hiney sticks out as he tries to fold himself down to the tray so he can get to the bowl of dried beans or whatever else is there.  So that particular loaned item will go back to the therapy unit, all cleaned up and shiny.  Tuesday next the lovely PT and the miraculous Guy Who Can Modify All Things will be holding a council on whether or not we're going to be ordering a SN car seat, a new Rifton walker/gait trainer (how can he have grown out of everything at once and so fast?), and when we should be thinking about getting ready to deal with planning for a new wheelchair - it will take about six months from the time we begin the paperwork.  And his AFOs need replacing, a process which begins with tracing the outline of his feet, on Tuesday.  He needs hand splints too, which we'll address the thirty-first with the every other week OT appointment.  Which brings me to what a shortage there is of pediatric therapists, in case anyone is considering a career change.  Q needs to have OT at least weekly, twice or three times a week would be of clear benefit to the boy, but two or three times a month is what's available.  Argh.

Communication devices.  Not much headway.  The episodic SLP guy needs more footage of Q using the device he wants to order before he can write it up to justify for coverage, a process which takes about three months.  I'm seriously considering the iPad, mostly because it's a fourth of the cost of the specialty equipment, but also because it just seems that much more flexible and effective for Q.  Give him a splint to support the extension of his index fingers, and we're off and running.  Just like that.  But it won't be covered.

We are increasing Baclofen with two more weeks to go before Q is at the maintenance dose.  I think it's working for him.  He seems to be making gains in real muscle tissue as opposed to having those tiny, bird-like legs that one often sees in kids with CP or other particular muscle issues.  When I work on his legs, there's definitely more mass there to stretch.  I noticed about a month ago that he has actual lats, a nice change - now to access the other parts.  His swallowing is better on the Baclofen too - better oral motor skill, use of lips, far less excessive tone, more appropriate swallowing and coughing, less spluttering or near-aspirating.  I would so love for someone to produce an accurate dosing system that would circumvent the need to implant a pump, though we'll certainly be looking at that as the best option, given what's out there.

And it's time to get the eyes checked again.  All ten of 'em.  That's a whole morning's activity!

On that happy note, I do believe the boy is asleep (he napped after swimming therapy today) so I'm going to go crash too.  I'll leave you with the verse from the wildly successful not-VBS week.  (Can I get an Amen?)

Taste and see that the Lord is good.
Psalm 34:8

XO.

Happy Father's Day

Bruce Feiler has an especially compelling story to share this day.  Once there, watch his TED talk and read his piece on Daddy bashing.

Rob Rummel-Hudson's book, Schuyler's Monster, tells the story of a family walking an unexpected path.  They're in the thick of it still and he has excellent thoughts on fathering.

Randy Pausch passed away nearly two years ago.  He remains a giant in the category of dads.  If you haven't already seen it, his "Last Lecture" at Carnegie Mellon is worth your time - scroll down once you're there.

Each of these men is a little larger than life because (in my opinion) of their ability and willingness to be articulate about things so large and heavy as to be nearly unbearable and unfathomable.  Which is the secret, I think, of good dads everywhere, most of whom are carrying on quietly and couldn't care less about anything but their families: showing up is the thing.  Bringing your A game even if you have to make it up with spit and baling twine.  If the A game is unavailable, whatever one has is brought and the rest is sheer force of will.  The desire to really be there informs their speech and thought and other relationships.  And we are all infinitely better for it.

(Rob inspired me.  Good moms work at being so, and I'm inferring, based on Rob's comments about parents, that good dads do too.  I think there's plenty of evidence to support this notion, but as you may have noticed, I'm not a dad, so it's still an assumption on my part.)

A cheer for good daddies, then.  And you should probably go hug yours.

XO.

Well, hello there

Shall I begin another post by discussing how busy we are? How about I just post a typical schedule...

Sundays - Projects, yard work, lesson planning, groceries, etc.
Mondays - School, E's voice lesson (she's trading babysitting for voice), sometimes medical appointments. But mostly lots of school.
Tuesdays - Q has PT, Speech and OT in the morning. G has OT at the same time; when needed, ortho appointments follow therapies. The girls are usually doing workbooks, watching videos, or cleaning their room while the boys are busy. G reads copious amounts of History while waiting for Q. After lunch we head out to violin/art. Usually there's time for Latin and/or etc. after.
Wednesdays - K has just one more early morning PT session (wahoo). Piano in the morning for the older four (schoolwork for whomever isn't actually in a lesson), during which Q heads to preschool for an hour of either OT or PT, alternating weeks. Afternoon = school.
Thursdays - Q goes to preschool in the morning because there are fewer children in the classroom on Thursdays which means less germs. He has 20 minutes of Speech while at preschool. Schoolschoolschool for the rest of us.
Fridays - morning involves some organizational time for the household before Q has PT (usually in the pool, he's hilarious). Afternoon = library, school, more readying for the full day to follow.
Saturdays - Busy. We've had a play, choir, orchestra, platform duties, potluck involvement, Improv classes, and now rocket building, as well as game nights and more. This means packing along three meals for Q and usually one plus a snack or two for the rest of us as well. Changes of clothes, coloring books, stuff to read en route, and more, bagged up and ready to haul. We love our church. And we are always glad to hit the sack by bedtime. The summer will be a nice break from the crazy-busy Sabbaths - we're planning to do a little hiking (pack adjustments should let me carry Q one more season).

So that's how we spend our time during the weeks around here. We usually have about an hour, sometimes ninety minutes on violin every day, plus roughly half an hour per kid on piano (though K often puts in an hour a day), plus PEGS (chore chart) and schoolwork. We get most of the actual schoolwork done with long days on most Mondays and Thursdays, with the rest spread out between obligations on the remaining two and a half-ish days. So far, they're pretty voracious readers, so taking them into the library is a must (and sometimes feels like inviting locusts into a wheat field).

Q gets at least half an hour, often up to two, in his stander in the morning, and in his walker (with leg splints) in the afternoon, if we're at home. If we're out (museum, etc.), he can be held upright with a hand towel around his chest, under his arms, and supported well enough to be mildly ambulatory, depending on how driven he is to get to the next thing. The goal is to have plenty of time in a standing weight-bearing position to deepen his hip sockets as well as to help him to have early experiences in trying to be mobile.

Lately, (since last fall) we've been attempting to get out and walk/run a few times a week. Three times in a week is good. Five is pretty miraculous, but does occur sometimes. Six would be thrilling, for me anyway. Q seems to benefit from the head bobbing motions when the chair shimmies, though it seems uncomfortable to me when I'm watching/pushing.

The bumps on walks/runs seem to have more or less the same effect as the e-stim Q receives in PT. I've contemplated asking insurance for an e-stim unit to use at home, but I'm having trouble imagining folding one more thing into a day around here. Even a small thing. I know the muscle groups well enough to target them and put the leads on correctly and quickly and I'd feel confident about that. It would be great for him to have that concurrently to his time upright. And the research is spotty/contradictory, even though his PT feels like we're seeing some changes in Q, and I think they're lasting as long as 48 hours after treatment. Chasing my tail here, as with some other things for him.

We're about to add potty training into the mix. Perhaps as early as this coming week. The pharmacy just needs to deliver the system and we'll be busy with that. Wheee!!!

One day they will all be grown up. It seems hard to believe and yet so close. I'm hoping that we're making some good memories, working hard (we should talk sometime about the correlation between neuroplasticity and effort) and playing well. I'm hoping that with all we've invested in, they're growing in faith and stature, character and ability. Parenting is such a marathon, no?

Hope you're looking forward to a peaceful and restorative weekend. May you rest well and arise blessed. XO.

Fondly

A beloved relative died last week. She's technically not "mine" anymore, though it's difficult not to think of her as related. She had a way of showing up at just the right time, bearing potato salad or spinach salad for myself and someone else, or introducing my kids to "hot dog soup" -- which has become their all time favorite quick meal. She once hung a shopping bag off the front door knob, with lovely jammies for me inside it. It was just because she knew exactly what it was to be in my shoes - missing my very busy med student hubby, on a tighter than tight budget, mom to a bunch of little kids. She brought her world famous enchiladas to someone's graduation dinner. Too much going on, trying to make that weekend a great one, and I just never did sit down long enough to get to the enchiladas, though I'd been drooling a little at the thought of them since she'd offered to bring them months before.

She commented to me once that watching me with Q was like watching one-to-one nursing care, 24/7. She was suspicious of Veggie Tales ("Can talking vegetables really be a good influence on young children?" Ha!) and unfailingly gentle and engaged with little ones - loving on Q and getting him to burble to her, and bringing toddler G the Good Dog, Carl book when she realized that he might be afraid of their large dog. We loved that book, just about to pieces.

I so admired her for who she was: a fierce mama to her kids, whip-smart, wickedly funny, kind, insightful, a touchstone for her husband, a loyal and attentive friend, widely read, loving, and able to throw snark with champions. It seems brutally unfair that such a person should be gone from her family, her life, from the lives of the people who loved her so. I'm sad and fairly weepy.

I have good stuff to share about the more current doings here, but that will have to be later. We've such cool things happening at church this weekend, and I've got to go blow my nose a few more times before hitting the sack so we can be ready for the morning. For goodness sakes, love on the people you find to be important to you. Really.

XO.

Ups and downs

So remember how I'm not freaking out? I may need better skills in that area. I've been looking at houses, working on getting qualified for a creative loan situation that would be augmented with grants from a county program that works to help families which include a member with a developmental disability to own their own homes. The idea being that it's nearly impossible for families to achieve this when often one parent really must not work in order to accomplish what must be done to keep the group on the rails, especially in the case of the person who is disabled. (And trying to communicate this to the general public can be nearly impossible.)

I'm wondering if I just should not be contemplating this. I've run a gazillion budgets and they work. It would be tight, but we could manage if I can find that miracle house - a foreclosure in good shape with lots of room, perhaps even with some modifications already present, at a low enough price to make the payments about half of what I'd "qualify" for (can we say Dave Ramsey?). I thought I'd found one that met that criteria, including exterior ramps and a room that could potentially let me work two or three hours a week from home, but it already has an offer on it. If I had an extra hundred thousand floating around, there'd be no problem finding a perfectly adequate house, but my price range throws a monkey wrench in for sure. Of course, even then, the chances of not needing to modify bathrooms, etc., are pretty slim.

Other things that make me go hmmm about all this? It seems crazy to try and be in a house away from other adults, given that the kids aren't exactly ready to leave home yet and Q sometimes needs supervision just so I can shower. What if I get sick? What if for some reason I needed to carry the entire monthly budget myself? I could stop driving places, then scale way back by cancelling everything but groceries and utilities. Of course, on can't cancel a mortgage. What if, what if, what if...

It's making me a little crazy. In part because - good news! - Q's well on his way to getting his potty system. The letter from the pediatrician has arrived at the therapy unit and will soon be on it's way, along with another ream of supporting documentation, to the pharmacy. And then we wait. And look for some way to fit it all in here, or find a place that can either fit it into an existing (probably modified) bathroom, or can be easily and inexpensively modified to make it so. Also? I'm ready to look at acquiring the rolling base for his bath seat. He's nearing 35 pounds and is quite the slippery fish when he's wet. It's getting harder to wrangle him in and out of the tub. But then I need a place to use that rolling base...

I think you see how this loops. It's a hamster wheel in my brain and I'm about at my wit's end. I'm seriously thinking about keeping the kids and I on some sort of "European Traveller" wardrobe plan. In other words - your collection of clothing consists pretty much of what you can fit in your (not tiny) backpack. Coordinating neutrals, baby. With maybe one nice red sweater thrown in. Two, maybe three pairs of shoes, max, including espadrilles and hiking boots. And viola - we'd fit happily into a veritable crackerbox. As long as it has windows and more than one bathroom - so I can get one fixed up to accomodate Mr. Q. Of course, this version of The Grand Plan falls apart when I remember the amount of laundry that Q generates all by himself and that I don't currently own a washer/dryer set. And that washer/dryer sets cost, you know, money...

About the other equipment Q needs - now I'm wondering how we'll manage to nail down the communication device in a timely fashion. So much of Q's developmental needs are defined not by what will best suit him, but by what can be justified to the insurance folks or how we need to time the requests for the expensive items in order to get a positive response. This galls me no end. For a kid who seemed to identify colors and letters last spring/summer, we sure aren't any closer to pulling off a device for him to keep at home, much less one he has access to for more than minutes out of a week. Even then, figuring out which particular thing will best suit him is sort of agony. Are his fine motor skills at their peak today? That indicates option A. Are they lacking today? That indicates B. How about head control? Good? Option C. Not great? D. Awful? E. Eye gaze - tracking good? F. Tracking hard to obtain/sustain? G. How vocal is he? H? I? J? Can he approach the midline with his hands/arms more or less than at our last visit? K, L, M, or option WW, perhaps. And will you be able to build your own flibberty-dooble attachment to go with your eventual choice of $20K equipment? If not, you should consider our triple A model. And good luck getting that covered, because it may or may not be something that applies too broadly for use by the general public. Touch screen computers, while roughly one thousandth the price of the specially designed speech equipment, are therefore disqualified. Boggles the brain, really.

Not that an iTouch or iPad (or the ilk) would remotely answer everything that the big shiny boxes of words do, but if the big and shiny is out of reach, then the less expensive option should at least be considered, for crying out loud.

Anyhoo. I'm frustrated and probably in desperate need of a run. I'm feeling that thing - about being in charge of outcomes where I don't really have say in the process, just the accountability for the eventual result. It's kind of enough, already.

Q's out so I'm heading to bed so I can increase my odds of having a shower before church in the morning. Hope your prospects for a truly, down to your soul, restorative weekend are good and getting better. Enjoy. XO.

Head banging

Where to begin? Q needs some expensive stuff.

The list:
A sort of mobile walker/stander/supporter thingy that allows him just enough movement so he can get into trouble (as any four year old would like to).
A potty system (he's dry over most nights) that supports him sufficiently in a good position.
A "voice" - via an augmentative communication device of some sort which is likely to be about $17,000 all by itself.

I would dearly love to also have some sort of bike trailer that converts to a good jogger/stroller. It's tough to run with Q in his Bingo - the poor thing shimmies badly on the slightest variation in a surface.

So I'll leave you to contemplate this part. There's more, but I'm tired as well as stymied so I'll be back to discuss further.

Stuff and things

Increasing Number Of Parents Opting To Have Children School-Homed (Snort)

The Boys Have Fallen Behind


"...self-esteem encourages emotional incontinence..."

Game changing brain change.