Sunday, February 01, 2009

Four things

I'm combining topics here because I'm running short on time, not because any one of them is less significant, or less deserving of a full exploration. We'll proceed chronologically through the biggest events of the week.

Preschool. Turns out the co-director of the Special Services is a member of our church. A guy well known for his even-ness. Hurrah. It seems that the details need to be worked out, but that Q will be able to receive some services at home, perhaps some therapy at the school district? I don't know what exactly this will look like and neither does anyone else, since we're in uncharted waters, but I'm so glad to have a team of people who are listening carefully about Quinn's various needs and diagnoses and all working to get him what he needs. More about this to come. That was Wednesday.

Thursday my mom finally got my dad to a doctor about his increasing weakness in his hands. It's, well, it just is. This isn't going to be a picnic. He has risk factors that increase the likelihood that the worst case scenario will play out, but there are things that can be done, so we'll see. Suffice it to say that things will be different than we had imagined and we're all thinking differently about everything. The rest is his story to tell.

Friday. I was on the phone for most of the finishing off of the trial. It's done. There will be papers to sign, I think. I am sad, but in practical terms, nothing in my life changes. Probably the saddest part is that he doesn't see our kids more, and they him. This is the single most wrenching detail for me now.

It's kind of too bad for him that he didn't meet her long, long ago, you know? I imagine they probably both feel the same. Anyhoo, he's marrying her soon and they'll have a long and quite likely very happy life together.

As for the details of the end result? Well... I'd hoped to be able to save for a house. I don't think that will happen, what with kids needing braces, and etc. But I am without a guillotine hanging over my head, financially speaking. I am grateful and relieved for that; it is no small thing. The kids will have most of what they could possibly need and we'll figure out the rest. It will be good, because it will be. Because I said so. Because I am working up to becoming a force of nature. Rowr.

Some of you will now want to ask things about my moving on, dating, remarrying, etc. Here are my thoughts on that: A friend sent me a link to a woman's blog, the widow of a very good man. They had an incredible relationship, a devout/practicing home, much love and laughter, a pile of growing and happy kids, and then suddenly he was gone. She has spoken on her blog of wanting to remarry in part because she had known a Very Good Marriage and wanted that again.

I can appreciate that. Viscerally. I can also appreciate that you wish all manner of good things for me and mine, especially in the relationship department, especially since each member of my little group has most of our lives yet ahead. Life is just not looking like that at this point. And I've got stuff to do, so we'll move on now.

Saturday (Sabbath). I took the big kids to church and we cut out a little early to get home in time for Q to be the demo kid for a feeding class. Rona Alexander, a speech path PhD, came out from Wisconsin to teach a class at the therapy place. Q's new speech therapist, come March, was there too (hurray!). Ms. Alexander had me set Q up to feed like we usually do in the Versaform, then give him a few bites of food, some drinks out of his Boost for kids straw, and using a cup, drink some water. She watched and then took him and worked him over. For about an hour, she did all kinds of compression, stretching, wringing (massage vocabulary coming out there), and generally turned him into a wet noodle. With each pull/push, he sat up a little taller, pushed a little harder, until he was, while perched on an 8" bolster, sitting upright with his feet flat on the floor (!), and holding his head upright, wobbly still, but only a little, with just light support under his arms. Holy cow! He's a shameless applause-aholic and whipped his head around and grinned at different parts of the room in order to elicit claps and laughter. He was totally in his element, and the whole group of therapists was smiling, enthralled. (Later the resident therapists discussed how they secretly fight over him and want him on their schedules. Heh.)

But the coolest thing? Ms. Alexander has shown in her work how tongue thrusting (Q has an often unhelpful tongue) relates to a child looking to right his tone and stabilize his trunk. So after she worked with him to turn him into Gumby and he was sitting so nicely, pelvis in place, head up, she had me feed him again. Guess what. C'mon. Guess.

His tongue didn't push the food or liquid out.

Really. He got the food in his mouth and swallowed it. He had some dribbles, but one can clearly see the progression and note that the dribbling really is just related to his awareness of his lips. Not to the tongue. Not to his ability to take food. So. Not to overstate it or anything, but WOW.

I inquired further about what an ideal scenario would look like, incorporating her techniques into his daily routines and therapies. She said that more therapy sessions every week would be great ( this means $$$, because insurance probably won't cover it). A therapist asked how much of this she'd show to a parent and her reply was, "Well, depending on the parent..."

I asked, rather quietly, and kind of holding my breath, "How about a parent with a background in massage?"

So she showed me stuff to do. It's a little alarming, since it looks like you're maybe about to lift his ribs right off him, but I did it and I can see how it affects everything from his breathing (his OT had just expressed concern for his future respiratory function), to his tongue, to whether or not and how he'll be able to walk or sit.

I spent a few seconds kicking myself as I watched her work, since much of her technique is kind of like Deep Tissue for itty-bitty bodies, and I feel like I should be aware of all things related to muscle/soft tissue, if not actually able to influence them myself. I reoriented my head pretty quickly. I mean, if I'm short on time anyway, wasting it on self-flagellation is ridiculously counter-productive. So I'll do a little bit more work with him when he comes out of the tub -- while he's all warm and softened up, show everyone who deals with him what he should look like when he's propped and structurally working really nicely, and go push gently for more OT and PT time.

Seriously. If I can get a copy of the tape and figure out how to post pieces of it, you would be amazed to see the difference. Shoot, those of us in the room watching the whole process were floored.

That's been the week around here. Plus the regular school and music lessons. And the kids holding their own Art School in the living room. K became the go-fer, G put his sketch book on the little collapsible music stand, and E and S set up their easels (from Christmases past). Q gets wedged between everyone with his birthday balloon in his little fist. After a while, Little Miss Go-fer settles down with her book and they're all sitting there, alternately gazing out the windows and swabbing their papers with color or scribbling away. These things often spontaneously burst forth and it's so fun to watch. God bless 'em.

I've got paperwork to catch up and things to get written and lesson plans to do, so I'm off. Thanks for your prayers and good wishes, all you lovely people. Goodness knows I need them, still and always.



~ V ~ said...

Know that you have been, and will continue to be, in my thoughts and prayers daily.

I don't hold out high hopes for your fifth paragraph. Time will tell. Some people just aren't happy when they finally get what they think they want.

I do a happy dance whenever you post the Q improvements and breakthrough realizations. Really. My kids think I'm nuts :)

therextras said...

Way cool! - the visit with Rona Alexander.

WAY cool! - that you have learned some new ways to manage Q.

Thanks for sharing the couple of things therapy related. Can't comment on the rest. But...
All the best,