Aaand it's Friday again!

Q and I traipsed up to his orthopedics appointment this morning while his sibs headed off to violin/viola lessons with the Magnificent Auntie.  I like the orthopedist, though I could (have I mentioned this already?) go the whole rest of my life without hearing another call pager going off.  Twitch.

So here's the deal.

The films show Q's left hip subluxed at 60% or more, and his right moving out more than it was this time last year.  More important is the fact that his hip sockets were more bowl-shaped last year and more saucer-shaped this year.  This is a pretty solid indicator that he'll need to have surgery at some point.  The benefits to going ahead sooner are many.  Kids who don't have surgery until they're in constant pain, usually around 14-15 years of age, are really only candidates for resection of the head of the femur at that point.  People who are ambulatory with typical tone can have resected femurs and continue to walk because they have lifetimes of good muscle built in that area.  People who have atypical tone cannot expect to stand or walk again after a resection.  Period.

There's a significant study out of Australia regarding pain in hip dislocations.  Not all children with dislocated hips have pain, and some surgeons argue against surgery in any cases who do not have constant pain (see above example for why we would not want to let things get that far).  Interestingly, children who attempt to be engaged - verbally, vocally, or otherwise, suffer pain with hip dislocation at the rate of nearly 100%, whereas children who are less able or interested in being socially engaged, do not.  This appears even when other factors are controlled.  The orthopedist indicates that the hypothesis suggests that it has something to do with hardwiring and development, much more than with communication.  Striking info, there.  He says that Q falls firmly into that category and he would expect that Q's having some discomfort now (recent developments seem to indicate this), and will eventually have severe pain if untreated.

The surgery is not an emergency.  There is a window of eighteen months to two years, and Q's scheduled for his next x-ray and ortho consult in early August.  In the meantime, while the orthopedist would certainly not suggest that we look at a Baclofen pump for the purposes of the surgery, but because it's already a consideration, he'd be on board with it as a good next step, which will also provide further post-op tone and pain management opportunities.  PTs, OTs, and Q's rehab doc all concur, so the rehab doc has put in a request for a referral to neurosurgery to discuss intrathecal Baclofen.  One of the benefits to Q having a pump placed for this is that he would be able to take much smaller doses of the Baclofen.  He's currently at the max dose for his weight, 20mgs, 3x/day.  The lumbar test dose (which is exactly as notsimple as it sounds) is a 50mcg push, or bolus, delivered in the space of a few minutes in order to gauge particular effects.  The daily dose via intrathecal delivery is 100mcg, spread out over 24 hours.  The lower dose, delivered directly into his spine, allows it to bypass his liver, which would eventually begin to show toxicity with the high oral dosing.  Also, any residual sleepiness goes away with intrathecal Baclofen.  He hasn't had much of that, but it would be awesome to see him more alert.

Q has built quite a bit of actual muscle in the last year, since beginning Baclofen.  With the tone pushed back a few paces, he can build actual muscle, and he has.  He's long and lean, like his paternal set of genes, but there's definitely real muscle in there and he uses it well.

There's so much more to tell.  The ortho guy is unbelieveably detailed (which makes my busy brain so happy!), and cited the aforementioned compelling study several times as being the best current source of info on kids with spasticity and hip dysplasia.  I'm sure I'm leaving out almost as much as I put in, so pardon me if I revisit to add details over the next couple of days.  Another decent source of info.

I'm exhausted.  How 'bout you?  Hoping sweet things for you this weekend.  Next up for Master Q: endocrinology and dental clinic.

"Kiss those babies".  -Dy

Progress

Q has had an interesting run with professionals lately.  Tuesday he saw his pediatrician - all is well, though my definition for such things may not be the same as that of the general population.  He hasn't used the nebulizer this season (fingers crossed), his skin is unbroken (except for the self-inflicted scrapes and bite marks on his hands), and he's happy.  No small thing, that.

Today his new caseworker from the Department for Developmental Disabilities spent three hours here, doing the initial intake interview.  How much help does he need dressing?  Managing grooming?  How about feeding?  In learning and play activities?  I think the more effective question would be: what doesn't he need help with?  It would certainly have made the whole process shorter.  Heh.  I have no idea what the expectation should be for the outcome with this evaluation.  The caseworker will return tomorrow with the completed plan so we can have the option for care coverage for the month of March.  As of today, the estimate for care hours is 86.

I have two reactions to this.  First - thank heavens that there's an option for this.  At all.  I may choose to have someone spend the night to turn Q and reposition him, should he awake, between the hours of ten and six once or twice a month so I can sleep.  I can think of other very useful applications for this as well.  This poses such a huge blessing that contemplating it makes me a little light-headed.  I'd be giddy if I were less tired.  Second - so, um, let me get this straight.  It takes eighty-six hours a month to care for Quinn?  What?  No comprende.  Eighty-six hours?  In what context would this be true?

The caseworker is a very nice man.  He spoke of his own experience helping to care for his cousin who had severe and complicated CP.  He said that I'm doing an excellent job (blush) with a very time intensive and exhausting situation.  He found Q's smile engaging, touching, beautiful.  He considers the result of my efforts and my knowledge of Q's specifics, as well as the human body generally, to be remarkable.  He's spending some time tomorrow morning going over the notes to fine-tune Q's profile and will return the final results to me quickly, so that we can get this moving, as I mentioned.

Eighty-six hours.  I'm guessing that this means that an algorithm has decided that a typical five year old requires eighty-six hours less care than Q?  When the nice man asked about the biggest needs for Q, I told him that our challenges here right now center around the fact that Q, himself, is a full-time endeavour.  Add in the medical and therapy management and administrative issues, plus his sibs, and suddenly there's more to do in a week than I can realistically complete.  For example, we still don't have window coverings up.  Deep breath.

And yet.  (You knew I had one of these, didn't you?)

The kitchen is pretty darn clean, though a crevice tool would be welcome under the edge of the stove.  The whole house was vacuumed yesterday, including many of the baseboards.  The kids are excited about their Greek temple models.  Everyone is making some kind of measurable progress in learning.  The bathrooms are pretty darn clean, though I suspect G's shower could use some scrubbing.  The ubiquitous boxes are becoming less so.  There are pictures on some walls, and slowly, steadily, more things are finding their homes in shelves.

Q has an orthopedics appointment at nine tomorrow.  Both his therapy center and school PTs as well as his OT would like to see the lumbar testing and possible placement of the Baclofen pump before any potential surgery.  Management of both pain and spastic tone would be much easier post-op with the pump, resulting in a vastly better experience for him.  (Head between the knees... hating the prospect of all this...)  I'll have more info tomorrow about all kinds of stuff.  Knowledge is power.  Tra la.

Three Good Things:
My shower squeegees.  Such effective little tools, and they make less work for those cleaning the showers.  Win!
Things I've learned over the years from certain people, some of whom you might not suspect I'd include in a gratitude list.  Thanks to those people, I have encyclopedic level stuff in my head, and it ends up being useful in all kinds of situations.
My kids, the punkinheads.  They're smile-inducing, work-creating, attention-deserving, organizationally-motivating, daily challenges, in all the right ways.  They prod me onward, require that I be brutally and painfully honest with myself, and they bless me incomparably.  All at the same time.

More soon.  XO.

Slide in

Aaaand it's Friday night.  Phew!

I have only a few things on the floor in the living room, after trying to organize all of  Q's stuff into a garage sale bookcase - fifteen bucks for oak with deep shelves.  Cool, huh?  The remaining items may not make the cut.  The parts still stymieing me are the "extra" bits for his chair and walker, the spare pads and such.  Some can go into a box on top of the shelves, others may need to live in his closet.  Closet.  Swoon.

Have we discussed my favorite things about this house?  First, the closet which Q is making good use of.  Apparently it's a "his" closet, being off the master bedroom and all.  Heh.  Most of his supplies are in there and I'm so glad to have it.  Second, the main floor bath and bedroom.  Modifications needed later, but if he isn't able to negotiate stairs at all, or a lift plus a few steps cannot be managed for him in the future, he still has his own accessible bedroom (which was maybe supposed to be a massage room, but unless you call me, when in the world would I manage to pull that off?  The word "busy" comes to mind.).  Third, the front steps are at precisely the right height for Q's chair to be lifted in and out without so much back strain.  Fourth, the hallways are wide, so we can get the chair around inside.  Fifth, the bar/counter with five stools all lined up - working on the adjustable base idea for Q so he could join us there.  Sixth, I have three closets here not associated with anyone's bedroom.  The entry closet, the hall closet (near the garage entry), and the linen closet upstairs.  The storage and the wall space (unpacked the paintings) just blow my mind.  Now to get curtains on any of the rooms besides my bathroom window... There's a great view of the sunrise over the mountains, but it is awfully nice to shower in the light.  Same view through my bedroom window - awesome thing, to keep watching sunrises over the snow and trees.  Wow.

Q has an appointment with ortho next week.  It was then or wait until late March or late May, so we're going with this option.  I'm waiting to hear back about dentistry, which I'll tell more about when I can hold my eyes open.  Yikes!

Hope your pre heart day weekend goes well. Give some hugs and get some, too.

XO.

Q, redefined

So about those medical appointments.  Q saw a rehab doc this week at the Children's hospital.  She watched him walk and was quite engaging with him, and he with her.  She sent us off for x-rays and then sat down to discuss the findings. 

Last year this time, Q's left femur was about fifty percent subluxed, or "out" of the hip socket.  This year it's about 2/3 out.  The plan for now is to get consults scheduled with ortho and neuro-ophtho and think about when to have surgery.  If it's indicated (and it surely will be at some point), the surgeons may be willing to do both hip and eye corrections at the same time, in part because I'm trying to be mindful of Q's lifetime chances of needing general anesthesia; it's just a good idea to manage these things if one has that option.  However, the hip surgery is longer and so that may rule out any other simultaneous procedures.

Q is on a four day titrating plan for Baclofen - going up to the max dose for him at this weight and height: 20mg, 3x/day.  We'll talk in a couple of weeks, his newest doc and I, and she may at that time opt to add a tiny dose of a benzodiazepine during the day to hit the receptors that the Baclofen does not.  Things that would indicate he's not doing well on the new dosing of Baclofen: increased sleepiness (beyond the usual 48 hours from a newly increased amount), increased drooling, any sort of sustained decline in function.  It's pretty typical for him to have had that initial sleepiness, I haven't noticed any change in drooling with these meds adjustments, and any change in function has disappeared within a couple of days, as he wakes up and goes on to build more muscles as the inappropriate tone subsides.

Good things I know now that I didn't know before: he's 37 lbs and 42 inches.  He's growing!  Yay!!  This new doc is not opposed to placing a Baclofen pump sooner rather than later - hopefully skipping past the potential liver toxicity which can be seen in kids who've been on their maximum dosing for years.  She also thinks he needs to have AAC as soon as it can be managed and a wheelchair he can drive, baby!  (I'll be needing the remote cut-off switch for when he decides he can safely drive himself right up into the mountains, thanks.) 

AAC:  Q has been on a wait list for more than a year.  I just discovered this.  Since he already has speech therapy (for feeding) he had to go through the whole wait list thing again.  In the meantime, thanks to all you kind and lovely people (you know who you are), he has quite the iPad cache of games and goodies.  His fave, so far?  The free "Yes/No" app - he can answer yes/no questions easily and loves it so much that we're about crazy from it.  In a good way.  You know.

Motorized chair:  We've had a "starter" version - ancient car seat with motor and wheels plus a button for him to push to make the chair go.  The incredible noise, which probably violates city ordinances, has been, how to say?  Offputting.  For Q and for the rest of us.  The very good news - his PT thinks he may be big enough now for some of the demo options they have on site.  Or I hope they have them on site.

More good news today:  Q has a caseworker through the Department of Developmental Disabilities!  And the guy is coming out to the house on the seventeenth to do an eval and get the ball rolling for paid care hours!  YAY!!!  And also?  It has only just occurred to me that now I need to come up with people to actually be certified and to provide the care.  Preferably by March 1.  Another action item for the list, then.

I'm not so much enjoying the prospect of Q having this surgery.  The cutting and stitching up and recovery and more meds and pain and casting and general discomfort and wow, could we skip this and I'd be fine.  However.  If the rehab doc is correct, and I believe she is, changing that angle between the trochanters and heads of the femurs plus good management of tone should equal a real change in the trajectory for Q.  He will likely be far more comfortable in nearly any position, he should stand straighter (a very real issue for him as he's trying to work while upright), and most importantly, it removes much of the worries going forward that one often has about kids who are experiencing such a painful presentation - including joint and bone integrity.  Will this help him walk?  In so far as he's already able, yes.  (Try walking with your knees turned inward and clonking each other.)  But the goals for Q mean that currently his mobility and any walking/standing/sitting issues are separate.  He'll need his independence, as much as he can gain, and that will be with motorized wheels.  If he can eventually step up a couple of steps at a time, with help, and assist in transfers, I will be ecstatic.  Truly.  These things would be huge.  Would I like for him to walk?  You betcha!  And if he does, great!  But I'm not tied to that as a marker for his success.  Q's success will come out of the fact that he's a hard worker with a great smile and an even better attitude.  All that he brings to the table coupled with excellent therapists who are committed to figuring out how to get him out so he can play, talk, tell us what he wants us to know about him, will define how far he can go. The sky's the limit.

I know I've forgotten a thousand things, so I'll pop back and issue addendums when I can.  I'm headed for sleep - such an utterly exhausting week.  I've pushed off considering the logistics of all this for now (spika cast, transporting kid in cast, etc.).  Plenty of time to attend to that when I've got more info.  No sense borrowing trouble when it's already quite interesting, living here.

I so hope you're looking forward to a lovely weekend, all.  More apologies from me re: being so ding-donged out of touch.  I'm even sorrier that it appears there's no end in sight.  Hey - I'm issuing a standing invitation to come help me scrub down Q's equipment.  I could seriously use the extra hands here and we can chat!  Whaddya say?

XO, prayers, and peace.

Yin, yang, whatever...

January 2011 is on it's way out.  Hooray!  And also, well.  Not hooray.

Sometimes I look around and am pleasantly surprised that things are moving along at a good clip.  And then I just as often have one of those lurching feelings in my gut - the kids are growing so fast.  It's hard to imagine, but they'll each be heading out in the next few years, making their very own marks on the big world. As conflicted as I feel about it - excitement for them and their coming achievements/sadness at the anticipation of them heading out and away - how about all those parents not fortunate enough to be so enmeshed with their young kids?  Or even teenagers, even with all the angst and eye rolling?

I'm pretty blessed to have been this kind of mom.  I hope the kids feel the same (grin).  Q's stuff has added a whole other layer of exhaustion, but it's good to know there too that he's making progress and that he's happy.  That is such a big deal.  And who could ask for more, for any of their kids?

I had planned an early night tonight.  Early is defined a little differently here than a lot of places, I think.  I was pretty much set to be out well before midnight, but no go.  So I'm just going to take a second for a detour, since we're here.  I've thought about this lately, based on several experiences with families dealing with developmental disabilities and other special circumstances.  I don't know if there's any way to describe how tired I am a lot of the time.  Most moms of kids with special health care needs are constantly too close to collapse, and that's even with pretty significant help from a spouse.  If I try to describe how tired I am, will everyone I know go on to spend all our (potential) face time, such as it is, watching to see if I'm just too fatigued?  If resources of a bazillion different types are stretched thin around here and I give that issue "airtime" how am I helping anything?

For example:  We could use a funding resource.  Q needs more and more things that aren't covered by insurance.  Some of the other kids need things that aren't covered by insurance.  I need to set up a trust for Q to help with this, but what about his sibs?  (At this point I allow myself a few seconds of a nice internal scream...)  And so I will set this up, somehow, and it will happen, and I won't talk too much about it because I am so aware that what we put out there changes everything - how we're thought of by ourselves and others, the opportunities that present themselves, even our body chemistry, etc.  The Butterfly Effect: change one small thing, and it's all different.  How do we determine where to draw the line with this?

Life here is so incredibly, legitimately good.  It is magnificent because we have those "small" things - K, muttering sarcastically, wishing an ancient ruler good luck in his desire to rule the world.  S making her pronouncements all the live long day and then leaving love notes after she's thoroughly worn us out.  Q cracking us up with his giggles and guffaws while he successfully pushes a light-up toy around.  G being so kind with Q that he makes more mamas than just his own cry.  Sniff.  E, creating culinary delights, organizing everyone and everything, and driving us only the teeniest bit crazy with the current obsession - ancient Greece (we're building temples next week, thanks - the girl is persuasive!).

It is so good that it compels me to make sure that the crazy-difficult and inexplicable bits don't take the day.  They can have part of it.  I may gritch about chunks of misery, and I certainly do not fault those who have rather more of that going on in their lives than anything else.  I'm choosing to lead with the awesome stuff the kids do and the blessings we experience with startling regularity.

But.  It doesn't mean that there isn't enormous inner conflict.  Or pain.  Or even exhaustion.  This week we've had all those and vomit, so I think I'm eligible for a door prize, which looks suspiciously like...  (drum roll please) more medical appointments in the coming weeks.

And the kids still read, write, do maths, make cool stuff, and amaze me always.  Sometimes friends call or drop by (thank you!), and we have that space for revelry, even though there's not much reverie lately.  While so much of this picture may not technically be what I signed up for, it is certainly as much as anyone can hope for.  Even with the not early nights.  Even with disappointment, worry, heartbreak.  I am blessed.

I think I'm going to attempt sleep.  I was so hoping to be asleep earlier.  I will cry if I think about it, so I won't.  It was past two before I was out Friday morning, with an early day Friday for Q, and now the kids have rehearsal after church and then an evening gathering for their group, too.  Better living through caffeine, people.  Come on over, I'll share.  After sunrise.  Maybe Sunday.  Who knows - we can shoot for reverie.

XO.

Another week done

Hi.  Q slept exceptionally badly Friday night.  He went down uneventfully, but was up and squawky by about 2:30.  S joined us shortly after that and we were all fried by sunrise.  I do not know how, but we did manage to get dressed and get to church.  The sermon was so good (David being a man after God's heart, though he was far from perfect), the kids had orchestra practice, I handed off boxes for a person moving due to illness, and we came home.  Q kind of gritched all day.  He'd have been ever so much happier if he'd have just had a nap, but he's stubborn (snort - resemble his familyy much?) and wanted to be awake.

I'm up now because I have a heavy heart for some friends who are suffering.  Life has delivered extraordinary levels of stress to several individual families in the last several weeks.  Some are filing for divorce, some trying to prevent it, others facing terminal diagnoses plus wretched pain.  I wish that we could all take a break from the pressures of the everyday.  Perhaps if we each had a small shift, we could see the awfulness for what it is:  fear and exhaustion.  Those things shouldn't be allowed to take the day.  We should have good pain meds to go along with hospice, ordinary kindnesses to help us ease through otherwise difficult relationship issues, and restorative tenderness to keep us from ever approaching the brink to begin with.

I've been chatting with the kids lately about what it means to "suffer well" - that is, to do the best we can, or better than we suspected we could have, with that inevitable rain which comes our way.  It isn't that we should deny suffering or ignore it when it's making us miserable.  It's that we get more say than we think we do in how we survive or thrive in tragedy.  After leaving church today, I was thinking about what comprises happiness.  My conclusion is this:  one must possess metaphorical tools with which to handle difficult, painful, and even joyous events; one must make good choices; and one must possess good brain chemistry.  Beyond those things, a healthy balance between internal and external locuses of control allows us to take responsibility for our share (taking more than our share is better) of the blame when or if something goes wrong.  Hopefully then, people can take their tools, their good choices, a balanced locus of control, and do something magnifique with it.  Like hold their family together.  Like manage to suffer well through end-stage illness, grace and dignity intact.

We're not so special that we get to avoid the pain life so often offers.  But we are special enough to marshal our resources and manage what we must, grace and dignity intact.

I should send a shout out to all those who aren't hearing from me or anyone else at this house.  I'm not calling anyone these days.  Unless it's a matter of scheduling I'm not picking up the phone.  I don't go anywhere but church, therapies, medical appointments, groceries, etc.  I'm missing some peeps!  Wah!  So:  Hey!  Hope y'all are well!  I would love to be catching up and hanging out, at all.  But some of this has to ease, right?  I have a round of dentist and medical stuff to attend to and then it's just regulation craziness.  Maybe we can manage something by the time the daffodils are coming up?  Call me, people!  We've already established that I'm not managing to reach out, so call and we'll plan something.  Okay?  'S okay.  A'right?  S'a'right.  Okay good.

Love you all, and thanks for the sweet comments of late.  I'm finally winding down, so fingers crossed and eyes heavenward, and I'll come chat some more when I can be awake.  Smooch!

Howdy

Long time no write.

Q is a busy boy in this new year - riding the bus to preschool three mornings a week, using his big boy bed, sleeping a little earlier at night.  The bigger kids spent two and a half weeks with their dad and are back now.  We're almost moved in.  Does this process ever really end?  I have three or four large boxes full of stuff waiting for a cul-de-sac sale, probably in June.  I expect that number to rise significantly. 

It's been pretty weird, getting into the kitchen stuff.  I've been scrubbing a lot as I unpack.  I'd forgotten just how sick I was when pregnant with Q, and just how incapacitated.  So it's been strange, getting into stuff from a former life.  Very Twilight Zone - I'm not nearly as much that person now as I would have imagined myself to be.  And yet, I'm more "her" than I thought I'd ever be.  I don't know how to say it better than that, but there it is.

So I'm sitting here at the bar/counter, with papers to the side of this, E's ancient Dell laptop.  My little stack contains paperwork to sign, some 20% off coupons (wishful thinking - we shan't be shopping anytime soon), Q's triangle (for Christmas, part of his new percussion set) a glue stick, iTunes card (Q's), pencil, HOA info, and a little yellow pad, on which is scribbled:  Tenderness is greater proof of love than the most passionate of vows. - Marlene Dietrich (shamelessly lifted from a friend).

On the fridge there are photos of smiling babies, the dishwasher is full of clean dishes, airdrying, there are scones from Grandma and fruit on the counter for breakfast.  There's medicine and handwashed dishes, now dry, awaiting a return to their respective places.  A small fox wearing My Generation doll workout shoes is perched against a package of Q's wipes.  I see that S left the pickles out, silly goose.  There's fresh basil growing next to the sink (thanks, mom), and towels to take to the laundry.

The living room floor has a blanket for Q and Lincoln Logs - which all the kids played with all week long.  There are stacks of Q's equipment and toys along the walls - still working out what to do with all of this.  Some things are tough to organize so they're quickly accessible and yet stored attractively, you know?  More work to do there.  The violins are perched next to the piano and the music stand holds court mid-room.  Q's strollerchair waits for him for breakfast time, and his little adjustable table sits patiently, ready for the next onslaught of paint or marker.

It's quiet now, save for the last kid trailing slowly to bed, having spent quality time with a screwdriver, trying to figure out batteries for the solar desk lamp.

It's a good house.  They're good kids, and much-loved.  I am blessed.

I'd best be off - pickles to put away and dishes to manage, you know.  Hoping good things for you and yours, especially amidst the chaos we've all had this week.  Here's to healing, and to Life:  L'chaim.