Saturday, May 12, 2007

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.


Anonymous said...

Happy Mother's Day to a mom who truly exemplifies a loving attitude in the midst of such chaos. My hat is off to you. I hope and pray your littles bless your day tomorrow.

Waving the magic wand,

sleepy jeanne said...

Happy Mother's Day, sweet pea!