22 June 2006

Healthcare Hollaback, or Why I Sometimes Get All Teary Watching My Daughter Eat a Meal

Moreena, whose old and new blogs are full of amazing stories, has asked her readers to tell her stories: "What I'd most like to hear are the anecdotes, short or long, about the pediatric doctors or nurses or CNAs or any other healthcare employees who have made a difference in your lives." I could tell stories about Short Pediatrician (in whose office we were 43 times between January 24 and December 31, 2003), Head of Surgery Department (who recognized us in the day surgery elevator several months after CG's feeding tube surgery, on the day we were there to have ear tubes inserted and an esophagal dilation performed in an attempt to help her aspiration, and who said, "Tell ENT surgeon to page me when she's under, and I'll swing by the OR and put silver nitrate on her feeding tube site so she won't have to feel it"), or Fabulous Dentist and her staff (who are just so calm and child-friendly and enthusiastic even in the face of CG's hysteria about health care services). But the story I have to tell is about the World's Greatest Speech Therapist, who saw CG twice a month for 2.5 years and helped CG and all of us learn to eat.

Key piece of background for any new readers: when CG was an infant, she couldn't swallow properly. We didn't know this when she joined our family at 8.5 months, but the fact that she refused food when clearly hungry signaled a problem pretty quickly. Several visits to Short Pediatrician later (getting treated for bronchitis and double ear infections and rashes and general evaluation) we had a referral to an international adoption clinic and a videoflouroscopic swallow study, which revealed that she was aspirating (dribbling food into her lungs when swallowing). And to make a long story short, within a month of the adoption we were down at the Children's Hospital for a 4 day stay for feeding tube placement, and juggling appointments and referrals to the therapy services we'd need to support CG's muscle and social feeding development.

We'd heard stories about The World's Greatest Speech Therapist (WGST) from our friend Southern Gal, whose son Airplane Boy took a while to coordinate sucking, swallowing, and breathing and is another member of the Small and Mighty Club. Airplane Boy worked with WGST through Early Intervention, and Southern Gal and Airplane Boy just loved her. She's one of the few therapists who specializes in feeding issues with children. So when CG had feeding problems, Southern Gal called WGST and asked if she couldn't fit us in (WGST was on maternity leave and just coming back to a partial schedule). WGST called us at home to talk though her general approach. "I'm just here to support you," she said. And then she introduced herself to us at Short Pediatrician's office, where her daughter is also a patient. Her daughter, I should add, who had a feeding tube like CG's. Chatting in the waiting room, I felt like I'd known her forever. She's incredibly easy to talk to. CG warmed up to her instantly...although what's not to like, really, about someone with a twinkling smile, photos of children covering the side of a file cabinet in her office, three bookshelves full of games and toys, tons of food to play with, and a wrist full of really cool stretchy beaded bracelets she was always willing to share for an hour.

So our sessions started, two hours per month. At our first session, we practiced using Cheet-Ohs. I'd put one in the side of CG's mouth and slowly her tongue would move to the side to taste it. Then we used eye droppers to put a little line of yoghurt in her cheek lining, and her tongue would try to move the food around. "My speech therapist told me to feed her these," I would say to my friends, many of whom have lovely organic diets kind of like the one Shannon describes for Nat, the kind of crunchy experience I'd envisioned having with my child. I had a lot of trouble letting go of that whole-foods vision as I moved into a world where Cheetohs were homework and more fat meant more calories per lick and that was good.

Curious Girl's tongue calisthenics soon got a little more complicated--we moved to harder textures eventually, and practiced biting with back teeth. We worked on sipping techniques. We worked on playing with food. We worked on dipping, and taking turns, and increasing volume. We used stickers--one sticker per sip, with a big Elmo sticker presented for the drinking of half an ounce. And every week, WGST would greet CG with a big hug. "How're you doing, Bug?" And she'd encourage us, and praise CG, and just seem to have fun while she worked. And gradually, CG started eating a little more. Emphasis on the little, but more.

Our sessions weren't just about the eating, though. "Straight from WGST to my wallet," Politica used to laugh, because WGST always had ideas of homework. "Get a farm, or a toy garage, and take turns having the animals make sounds or drink or go to sleep, or cars needing to get gas or fill up," WGST advised. What pretending to make a cow snore had to do with eating eluded me, but we're good students. We do what we're told by someone we trust in a situation like this. And so we played farm. And CG was thus encouraged to make new sounds, and she learned that playing means taking turns. We thought she was too little to learn about taking turns, but we stared the routine anyway, and sure enough, taking turns proved easier. WGST was forever telling us to work on things with CG sooner than we would have, and we realized that young children learn a lot sooner than parents might anticipate. By introducing things--words, terms, routines--early, we got to practice them before Curious Girl was really old enough to get it all, and CG was learning along the way. And we were learning, too. It's not that WGST was telling us things we never would have thought of, but she helped us connect ideas to what CG needed in the moment, and she helped us scaffold things, so we had a sense of how our choices about playing farm were setting us up for good meals down the road.

WGST got us doing baby signs, so we could communicate more effectively (switching languages at 8.5 months doesn't exactly enhance language production. Her English vocabulary came in a little later than most of her peers, although you'd not notice any difference today.) Over time, the turn-taking behaviors got translated to mealtime, where we would take turns eating and drinking. (One day, I fear, Curious Girl will be in a fraternity basement watching a drinking game and thinking "this seems so familiar....") With WGST's help, we invented no end of drinking games (the nerdiest being one involving our President placemat. E-mail me if you'd like the rules.)

We introduced a lot of structure to our mealtimes to encourage CG to eat, and over time, we had to wean down off the structure so that she would take over eating herself. Backing off was harder than ramping it all up, and as CG was seemingly physically set to eat herself, but not yet doing it, we paged WGST a lot. We called her from the car in the Adirondacks on our first family vacation in this period. "She's not eating!!!!" we wailed. "It's normal. Vacation rules. Everything's different. It'll be OK," she said. We called her from home the first time we did a weekend wean from the feeding tube to see how it went. We called her the first time Curious Girl ever drank 6 ounces at one sitting. WGST listened, encouraged, and offered hope. We compared notes, parent to parent, when it was time to have the outside button on our daughters' feeding tubes swapped out, and we traded strategies for caring for granulation tissue or dealing with the tube and clothing. We talked about our experiences with the medical team who handled both our daughters' care.

Eventually, it seemed time to cut out tube feedings entirely. We kept going to our therapy sessions, although eventually, it became clear that there wasn't any need for them. Curious Girl can eat. In the six months or so since we've stopped therapy, CG has slowly started to eat more and more, and now, she's eats pretty much like a regular kid. If you didn't know the story I'm telling here, you'd never know what problems she's had to deal with.

And she'd never have dealt with them all if it hadn't been for WGST. WGST, of course, would say that it's all be up to me and Politica. "Kids like CG, kids who don't have any underlying neuro-medical condition preventing them from swallowing, get off their feeding tubes because of their parents," she told us once. Not in a blame-the-mama kind of way, but in an encouraging way, like "you can do this. You'll help her. It'll be fine." And CG's general optimism and social skills were big strengths, too. But the best part of all: World's Greatest Speech Therapist, who helped Curious Girl see the social joys of time spent at the table, who helped us organize the best of our parenting impulses, and who helped us all remember that it's OK to be frustrated at doctors and swallowing problems and tantrums and delays, that change happens over time, and that kids will reach their potentials with adults around them who pay attention, who listen, and make connections.

Thanks, World's Greatest Speech Therapist. Tonight we had dinner with friends and Curious Girl ate a piece of pizza; on the way there, she wanted her cup of chocolate milk in the car. On her birthday she ate her own birthday brownie. At my sister's, she ate a whole grilled cheese sandwich for lunch. She's eating, and growing. We couldn't have done it without you.


Anonymous said...

WGST rocks, and so do you.

Anonymous said...

I'm all verklempt. Beautiful story!

Anonymous said...

geez, when you take a break between posts, you sure do come back strong!!

Anonymous said...

I'm in awe again.

Anonymous said...

Isn't it great how resiliant kids really are when people take the time to pay attention to them?

What was life for CG like before she was adopted by you all? Was her swallowing problem something she had from birth? How did she manage to make it to you guys in the first place?

She must have some inherent amazingness!

susan said...

Shannon, CG lived in a hospital or orphanage for 8.5 months before joining our family. I don't know for sure that her swallowing problems were something she had from birth--there was no notice of them in her original medical records--but given the big holes in the nipples used in the orphanage bottles (and the fact that bottles were probably at least sometimes propped in cribs), I doubt they would have any reason to notice it. We didn't notice it until we switched to American-style bottles.

CG was born a little early and was low birthweight (not surprising for someone who is still relatively low weight for age now), and part of the swallowing problems she had is associated with prematurity and low birthweight. So I assume it existed since birth.

How she came to us...some would say destiny, but I put it more down to random luck and the judgement of the director of our agency who handles the referrals she receives. She had a feeling, she told us. And she was right.

Anonymous said...

Wow. That is a fantastic story. Thank you so much for participating.

Anonymous said...

I would LOVE to have the WGST come to my house:)!! Great story!!!