Speech update & next-surgery status

Took Wynn today to see her speech pathologist & oral surgeon - all smiles as she continues to make good progress. 

The next surgery is going to be in June 2014 (what we are trying to get on the schedule at least) and will be a complex one - although something this team has handled many times. They'll be taking a small core of bone out of Wynn's leg and grafting it in the small fistula that sits just behind her right front jaw - it's a hole from her mouth up into her sinus cavity. 

(When she was little sometimes spaghetti would sneak its way through and she'd look at us with a noodle hanging out of her nose.)

This will be a two-step process of course and will require an overnight stay in the hospital ... she won't feel like running around the next day for sure, and it'll be two weeks of liquid diet and then two weeks of soft / mushy diet after the surgery.

Not pleasant but it is the critical next step in helping her mouth make better-defined speech.

Surgeon Says ...

Wynn does not need to have surgery this summer! :-)

Both the speech therapist and surgeon were very impressed with the progress Wynn has made since February. She's picked up a few new sounds and is using a predictable sound-substitution pattern for the ones she's still working on. All good news.

Everyone was quite impressed with her recently-acquired ability to drink through a straw. (Which Wynn LOVES doing. She gets such a thrill from being able to drink from a juice box - just like the other kids.) From the prize basket at the end of her successful visit to the doctor, she chose a bright red silly straw as her reward. She's now happily using it to drink apple juice with her lunch.

Grandma and I have both told her how proud we are of her for all her hard work at speech. She's such a determined (and stubborn) little person, and that's helped her keep at it in speech therapy.

She's not out of the woods yet. There are still sounds to work on, but, for now, we can sign up for more fun things to do and enjoy the rest of our summer. Theatre camp, anyone?

(In other news: When Wynn and I got home from the doctor, we were greeted by Shadow, covered in blue painter's tape. He had it stuck to his paws, his chest, the sofa, the living room floor, the coffee table, and his stuffed squirrel. When I laughed and asked Wynn what she thought Shadow had been doing while we were away, she replied, "Um, I think he found the tape.") Yep. Good guess.

Happy Camper

Last week Wynn went to theatre arts camp at the Children's Theatre Company. In short, she had a blast. It was an absolute duck-to-water situation as she and her fellow campers took classic children's songs and acted them out. We've always known that she's an adept mimic and a bit of a goofball; theatre camp was a place where someone with this particular skill set can shine. And shine she did.

Each class ended with a ten-minute performance for the parents. By week's end, every man, woman, and child in that room knew what animal Wynn was going to choose to be, no matter the song: a gecko.

She'd come home each day and act out highlights of that day for her Baba, always taking a deep and sincere bow at the end - and waiting for the applause to subside before standing up.

My favorite thing from the week was when they taught her the three tools people in the theatre have in their toolbox: the body, the voice, and the imagination. Of course, she has a fantastically-elaborate way of explaining this concept, complete with gestures and dramatic shifts of intonation. I just love seeing this little cleft-palate, speech-therapy girl talking with such enthusiasm about the importance of her voice. Beyond the sheer fun and confidence-building of the week, I think camp really added another layer to her motivation to keep working hard on her articulation.

One happy consequence of theatre camp was that, due to its late-afternoon dismissal time, it forced Wynn and me to go out for dinner every night last week. We started out small with a McDonald's Happy Meal, but things improved greatly as the week ran its course. Wynn had a yummy sandwich at the cafe in the Institute of Arts, tried some sushi (thanks to Uncle Paul) at Obento-ya, and downed half a mango smoothie at the ChinDian Cafe. By Friday, she was thoroughly spoiled and responded to my suggestion that we just grab some tacos with a whiny, "Awww, I want to go to a real restaurant." We may have created a monster here, but at least it's one with good taste.

There are other camps at the Children's Theatre this summer, and Wynn has told me, "Sign me up," but we have to wait to hear from her surgeon whether or not she'll need an operation this summer before we can sign her up for anything fun. We go in tomorrow morning for another camera-up-the-nose assessment. Fingers crossed.

Accentuate the Positive

Back Story -

Several months ago, Wynn and I got home from school and found that our dog (Shadow) had chewed her stuffed horse and left its mangled body all over the living room. I scolded him and told him he was a bad dog. It made quite an impression on Wynn, and she has mentioned the time I called Shadow "Bad Dog" several times since.

Our Conversation in the Car Tonight -

Wynn: Do you think Shadow was a good dog today?

Me: Yes, he was probably a good boy.

Wynn: Well, you know, when he is a good dog, you should say good things to him.

Me: Really? What kind of things should I say?

Wynn: Like, "Oh, Shadow, you are such a good dog, and we love you."

Me: Yes, that would be nice to tell him. But what should I say if he was a bad dog?

Wynn: Well, when he is bad you should still say good words to him. Because sometimes he does bad stuff like chew on toys or Baba's blanket, but you should still say good words. Not bad words like, "Shadow, you bad dog!"

Me: But shouldn't I tell him that what he did was bad?

Wynn: Yes, but use nice words like, "Shadow, you good boy, why you do bad things?" That way you won't hurt his feelings, because when you say bad words like, "You bad dog!" you might hurt his feelings, and then he will say, "You hurt my feelings."

Me: You're right. I wouldn't want to made Shadow sad, but he needs to know that I don't like when he's bad. Wynn, what would you say to Shadow if he chewed up your gecko?

Wynn: I would say, "I love you, Shadow, but don't chew my gecko."

Me: What if he got your alligator and ripped its head off and threw the stuffing all over so you could never play with it ever again?"

Wynn: Oh, no! No! That would make me SO sad.

Me: Me too. So, what would you say to him?

Wynn: I would use nice words. I love Shadow and don't want to hurt his feelings.

At this point I'm thinking that Wynn is the kindest, most forgiving soul on the planet.

Me: Oh, Wynn, you are such a sweet girl for not wanting to hurt Shadow's feelings.

Wynn: Yea, 'cause if I use bad words and hurt his feelings, he might bite me.

Six-Month Assessment

Wynn's surgeon has us come in for a speech assessment and check-up every six months, so we went in today to see how our girl's doing.

Though she acted very shy and insisted on sitting on my lap the entire time, she was very good with the speech therapist - talked about the pictures on the cards, repeated words when asked, etc. All went well until the therapist brought out the fancy gizmo - it was black board, kind of shaped like a smile, with microphones on the top and bottom. Wynn was to hold part of the board on her "moustache" and repeat some sounds; then the device would measure how much of the sound was coming through her mouth and how much was being directed up through her nose.

Simple.

Non-invasive.

Kinda cool because you got to see little blips on the computer screen that showed the data.

Wynn was not buying it.

The therapist did it.

I did it.

We talked about how silly it was that we were drawing pictures with our noses.

Wynn still wasn't buying it.

We put the thing against her face, and she went completely mute. The therapist even tried to bribe Wynn with assorted candies, but the stubborn little one just said, "No."

The therapist had enough data from the other assessments to tell us that Wynn has good resonance, has made great strides in the last sixth months, and still needs to work on her initial consonants. No big surprises.

We moved to to height and weight - 25 pounds and 35.5" - and then went to meet with the surgeon.

He asked Wynn to repeat a few words and looked in her mouth. Then he asked if she'd seen anyone in speech today. When I told him who, he stepped out in the hall and barked at the nurse to, "Get speech on the phone." I could hear him talking to her about consonant substitutions and initial p's and b's, and I could tell he was not pleased.

He came back in and told me that he's very concerned about Wynn's struggles with initial p and b sounds and the way she substitutes other consonants in their place ("Blue's clues" comes out "glue's clues", and "puppy" sometimes sounds more like "duppy"). He told me that at her age and with the amount of speech services she's been receiving, he'd expect her to be doing better. If she doesn't show great improvement by our appointment in December, she'll need to have another operation.

The surgery would entail taking tissue from the back of her throat and bringing it up over her palate. It takes about half an hour, requires two nights in the hospital, and has a "rough" recovery. Apparently, about 20% of cleft palate kids end up needing this.

As he talked about the surgery, my heart just dropped. All I could picture was how miserable she was after that last operation - how she stood there and cried, drooling blood and holding out her arms in those hideous no-no sleeves. Then I looked over at her in the exam room, happily showing her Dora doll how to do a puzzle, and thought about what a sweet little girl she is. And how much I love her. And how I want to protect her from pain.

So the next six months are going to be all about words that start with p and b. We're going to practice like crazy and hope that her speech issues can be resolved with our efforts instead of with a surgeon's knife.

We know she's made tremendous progress in the last six months, and that makes us hopeful that we can accomplish this very-specific goal in the next six.

Wish us luck.

Mother's Day = Girls' Day

(Mother's Day morning, at home)

Me: Wynn, should we go to the zoo today and see the animals?

Wynn: Oh, yeah.

Me: Should we invite Baba?

Wynn: No. Just you and me. Girls' day.

Me: But, what will Baba do while we're at the zoo?

Wynn: Um ... play with Shadow!

(at the zoo, looking at the lowland gorillas, surrounded by noisy, chaotic crowd of stroller-wielding families)

Me: Look how big that gorilla is!

Wynn: Oh, yeah. He bigger than Baba. 

Me: You're right. 

Wynn: And Baba real BIIIGG. (accompanied with arm gestures for emphasis)

Me: There's another gorilla over there, see? Oh, she has a baby on her back.

Wynn: Mom and baby. That like me and you. (big hug)

Cute pictures, completely unrelated to the story ...

Go, Wonder Pets! Yay!

Wynn has fallen in love with the show Wonder Pets! She sings the theme song for us a couple times a day, and we often find ourselves whistling it as well. Here she is, burning off steam with a little song and dance before settling down to go to bed. 

Hey! It's for Horses!

Wynn has picked up many great things at daycare; among the not-so-great is the habit of yelling, "Hey!" anytime she notices something, wants something, etc. We've been giving her the "Hay is for horses" line - so much so that she said it to the cashier at Target the other night when the nice lady replied to Wynn's "Hey!" with one of her own. 

Now Wynn has picked up a horse of her very own - a gift via one of Grandma's friends. Wynn adores this toy and now has a great reply for us when we remind her about hay being for horses: "I got a horse at home!" It's name? Horsie. 

Here she is riding Horsie. She yells "Giddy-up!" and "Yee-ha!" when she's riding him around the living room. When asked where she's going on her horse, her reply never varies - Canada. (Apparently, Canada is on our back porch.)

Horsie is still a bit wild, and he bucked her off. Good thing she was on the carpeting. And wearing her bright green Wellies. 

After you fall off a horse, you're supposed to get right back on. Wynn thought it was better to wrestle with him a bit to show him who's boss 'round these parts. 

The next morning, Wynn thought Horsie looked kinda tired from all those trips to Canada and wrestling and stuff, so she tucked him in her bed. I don't know which is funnier - the sheer volume of pink she chose to wear that day or the Godfather-esque nature of how she positioned that horse. 

McMedicine

Today we took Wynn to Gillette Hospital to meet with the surgeon about her cleft palate. She'd been in an extremely cranky mood before we left, so we hoped for the best as we traveled down to St. Paul for the appointment. She was reasonably good under the circumstances; mostly she hated being put flat on her back to be measured. (Speaking of weights and measures ... our little Wynn has gained about two pounds! YES! Those McDonald's shakes sure do the job, don't they?)

The surgeon wants to get Wynn in to repair her palate as soon as possible. At eighteen months, she's at a rather critical age for speech development, so time is of the essence. He's having us go see an ENT first to check as to whether she'll need tubes in her ears (Cleft kids have more ear infections than average.), and he anticipates we can get her in for the palate repair surgery in early September. That's kind of a lousy time in terms of my work schedule, but Scott's up for the challenge (He's taken care of me after a couple of operations, yanno.), and it's really about doing what's best for her.

This was our first visit to Gillette Hospital, and we'd both just like to say that it was the most efficiently run medical facility we've ever seen - and we've seen our fair share. With absolutley no disrespect we describe it as being run on a fast food model of organization. We did new patient check-in, height and weight, consulted with the surgeon, and had photographs taken in 35 minutes flat. That's about as long as we'd normally expect to sit in a doctor's office waiting room on a GOOD day, so we were surprised that it went so quickly. They're extremely orgainized, have a great communications systems set up, and obviously have well-defined roles that help them all function so smoothly as a team. We left the height and weight room and were handed our file and told, "They're ready for you in Blue 4." We followed the signs, met with the surgeon, and were instructed to go to the photography room at the end of the hall, "They're expecting you." Wow. Everyone knew what was going on and had updated information along the way. They even had an air hockey table in the waiting room - not that we were there long enough to play. :-)

Tomorrow we'll be taking Wynn to her pediatrician's office to get her shots. Four of them. Yikes.

- Ann

Almost forgot ... Wynn slept in her own bed last night without rolling out! She woke up once and made a little concerned peep, so I told her it was okay and that she should go back to sleep, which she did. Tonight we're trying it with no grown-up in the room. She'll probably sleep just fine while I toss and turn in the other room being absolutely CERTAIN that I heard her make a noise.