Braces!

We had the 6-month followup for Wynn's upper-jaw graft today, and everything there looks ideal. For her teeth, we took the next step today and started braces on her two front teeth. These braces work with the tension from her retainer and will re-orient those teeth into their correct angles.

She was helpful and interested through the whole procedure (our dentistry friends at Gillette Children's in St. Paul are a great team)

Followup is in early February 2015. The plan is to get the front pair straight, and then expand to the next two, and the next...

Mouth surgery recap

This summer's operation is to take a small chip of bone from Wynn's leg and graft it into the gap in her upper jaw. At the same time, the fistula will be closed up (that little hole between the inside of her mouth and her sinuses, just big enough for a strand of spaghetti to sneak through).

Ann and I were prepared to spend the whole morning waiting, but the surgery was over in about 45 minutes!  Wynn and I spent the night at Gillette Children's Hospital - mostly for observation's sake, as she was up and walking the floor by dinnertime (and I had to hustle to keep up with her IV drip and monitor...)

No complications at all with anaesthesia thanks to the short duration of the surgery; we had also briefed the team about how that has been the roughest part of prior operations for her & they adjusted her ventilation tube to irritate her throat less. Seems to have worked.

Ann got to be the parent to go into the O.R. with Wynn this time to help her fall asleep

Bored the next morning - she's on a smoothie diet but for some reason Gillette seems unable to make them. Ann brought one in from Starbucks and Wynn wolfed it down. We got home around lunchtime.

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.

Getting ready for the Butterfly

Wynn had impressions taken of her upper and lower teeth this afternoon - she'll be getting a "butterfly" - something that looks like a retainer that goes on the roof of her mouth and gently pushes on the upper jawline so that her upper teeth are pointing up and down instead of ever so slightly inwards.  As a result of her palate surgery way back in 2007, that roof-of-mouth tissue is pulling the teeth, like a rubber band that has been stretched trying to get back to its original shape. This retainer-spreader will be in until Summer 2014 - when her next surgery takes place...

In Case You Haven't Heard

We've been noticing that Wynn says, "What?" an awful lot and sometimes needs us to say her name two or three times before she turns around and acknowledges us.

Then we had a storm.

Wynn, Shadow, and I were home the other day when a thunderstorm rumbled through. Shadow was shuffling around, spooked by the noise, so I explained to Wynn that he was afraid of the thunder.

"What thunder?" she asked.

Uh-oh.

This morning we took Wynn to the ENT/audiologist's office, and (after removing a TON of wax from her ears with a tiny vacuum) they confirmed that she has significant hearing loss in both ears. The good news is that it has nothing to do with the nerve; it's all about fluid building up behind her eardrum, which is fairly common among kids with cleft palate.

She'll be going in for surgery in two weeks - a quick insertion of tubes in both ears. She won't have to stay in the hospital overnight, but she will probably spend the rest of her summer swimming lessons with earplugs in.

She is not excited about having surgery and is already arguing her case by pointing out how she can already hear better without the wax and by telling us that she doesn't want super hearing because it might make things too loud in her ears.

We're just glad this is a relatively simple fix and that we'll be able to get it taken care of before she starts school in the fall.

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.

Up her nose with a rubber hose...

In between all the Chinese New Year activities, we also paid another scheduled follow-up visit to Gillette Children's Hospital. Our objective at this visit was to find out how well Wynn's palate was working, and not just by listening to the sounds she makes when speaking. This time, we were going for video!

The endoscope itself, about the size of a power screwdriver. The action end, however, is the thin wire extending out on the right.

After a short speech evaluation, where Wynn showed us which words she can say the "B" and "P" sounds particularly well, we moved over to an exam room where we encountered this computer workstation and the nasoendoscope. I have to admit I wasn't quite sure how big the wire was that we were about to snake up one of Wynn's nostrils, but when I saw it was only the size of a thick strand of spaghetti, I was immensely relieved.

(Yeah, I admit I was thinking co-axial cable instead of fiber optics. Shows me for not Googling the procedure beforehand. Hey, I'm a busy guy.)

Most of the time we spent in the exam room was actually waiting for the hospital IT people to get the new release of recording software to work right. The procedure itself took about five minutes: first, a quick spray of lidocane up Wynn's left nostril (since we'd taken that bead out of the right side a few weeks before...), then the speech pathologist snaked the line into Wynn's nose.

All of us - Wynn included - watched everything happen on the screen next to us. The thin cable has two fibers: one serving as a flashlight, and the other as a camera lens. After one big sneeze, the end of the cable was where it needed to be, and Wynn started talking. "It tickles!" she said...

The illustrations I've seen in textbooks which try to explain what the tongue, palate, and throat do during speech have always seemed a little abstract. Watching all the parts moving around, I finally 'get it.' The back of the palate is supposed to connect with the back of the throat to block airflow going up into the sinuses. With the video, you can see this happening.

In Wynn's case, it hadn't been happening, which is why her B and P sounded more like M. She was 'faking' the sound. However, we'd noticed in the past few weeks that she was occasionally beginning to speak some clear consonants ... we've been practicing rhyming, like her favorite funny phrase, "Shadow likes to NIBBLE on a bowl full of KIBBLE."

Sure enough, after a couple minutes of speaking "mama" and "mall", she'd connect with a clear "baba" and "ball." And right there on the screen we could see the palate making contact with the back of the throat.

Her surgeon reviewed the video. "Well, that's not so bad, then." In fact, the team was pretty impressed with Wynn's progress over the past few months.

Most importantly, it means we can put the question of whether she needs surgery on the back of the palate off until this summer. And that's a real relief.

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.

Her Old Self

Wynn had her follow-up appointment with the surgeon on Tuesday, and all is well. She has healed very well and got to jump straight into a "no dietary restrictions" lifestyle. We had anticipated that she'd need to be on mushy-but-not-quite-solid foods for awhile, but the doctor said she can have it all.

After I fed her a graham cracker or two Tuesday evening, she got this look on her face that said Hey! You're feeding me FOOD again! Then the begging started. She pointed for more graham crackers. She pointed for goldfish. She got progressively happier as each snack she asked for was given. Within an hour, she'd turned back into her old self. She was rolling on the floor, giggling, and kicking her feet in the air. Suddenly, she understood the concept of "giving five" and handed out five with great generosity to Scott and I. (She gave Ranger five too - but on the nose, which he wasn't too happy about.)

While we managed to maintain her weight through the hard times of the liquid diet, our girl still wants to grow. She's packing away the food - after what I'd describe as a lumberjack's breakfast yesterday, she pretty much passed out in her bed for over three hours. With a full tummy, she could finally sleep soundly.

We feel like we have our daughter back again - cheerful and funny (with moments of toddler stubbornness thrown in to keep us from getting too complacent).


Ann

Home Again :-)

The pictures show Wynn the day of surgery - not at all happy - and right before they took out the IV and sent her on her way - tired, but so much more content.

Wynn was discharged from the hospital around 5 o'clock yesterday afternoon. She'd made a big leap in her recovery in the afternoon - eventually, she was parading around the nurses' station in her diaper, pulling a toy stroller and baby doll behind her. The nurses coming on duty for the afternoon all said, "Well, she seems to be feeling a lot better." We had to carry her back to her room when she started insisting on going into the rooms of neighboring patients.

She slept pretty well last night - mostly just flopping around like a penguin because of her no-no sleeves. She slept most of the night on the air mattress, using one or both of us as pillows the majority of the time.

She put up quite the struggle about not being able to feed herself her cereal this morning, but after she watched Scott make a show of feeding me my bowl of Cheerios (not our normal procedure, by the way), she decided that it was okay for him to feed her too.

I made a trip to the grocery store to find easily mushable food; for the next few weeks her diet will consist of nothing thicker than mashed potatoes. We worked so hard to get her to gain all that "good" weight since we got home from China; we really don't want her losing any of it now that she's on this liquid diet. (Fortunately, milkshakes are not only allowed but encouraged by her doctor.)

The pain seems to have subsided substantially; she had plain old infant Tylenol at 7 o'clock this morning and hasn't shown any indication of pain since.

We're all so happy that she's bouncing back so quickly ... and that we're not eating hospital cafeteria food anymore.

Ann

A long night, indeed

I stayed in the hospital room with Wynn overnight, and yes, both of us are completely wiped out. Our little pumpkin just could not stay asleep - while I could tell she was getting better about the pain in her mouth and throat as the night went on, that only meant more blood and saliva was getting into her tummy and giving her discomfort there. And, as Ann mentioned, many soggy diapers. So I would say we were up every 45 minutes or so. (A hospital is a strange place at 4 AM...)

It wasn't until about 6:30 this morning that she really achieved a deep sleep state. I went down and got some breakfast - looking like heck, but they're used to it.

She was up by 7:30. We played a little bit of "Where's Wynn?", watched some Chinese animation I'd brought along (she actually paid attention for about 15 minutes), and had a bit of Jello they'd brought up for her and some yogurt from my breakfast. She was initially uncertain about eating (shake of the head "no") but once she had a bite of gelatin, she really got pleasure from eating again. Seeing her *want* to eat more brought a few tears to my eyes, of exhaustion and joy.

She fell asleep until about 9:00. The duty nurse and I got her up and disconnected her sensors and IV line, and took off her no-no sleeves, so that I could take her for a little stroll around the floor. We also tried to give her an oral dose of Tylenol -- getting her on semi-solid foods and being able to take oral pain meds are our necessary goals to reach before she can be discharged -- but then she barfed up everything she'd swallowed that morning, all over me.

While that was disappointing, it wasn't entirely unexpected -- there was a lot of blood and saliva in her stomach, and toddlers seem to have a tough time handling that. The silver linings to the incident are: 1) she is not having much trouble with swallowing anymore, and 2) getting the accumulated gunk out of her tummy may actually help her keep food down the next time we try giving her something. (And I'd packed extra clothes. Bonus -- it all washed out!)

I've come home to get a real shower, catch a few winks, and update all of you. Mama has the fort covered down at Gillette. We have not heard anything yet about if or when Wynn will be discharged; obviously we will have to take that as it comes.

As promised, here are a couple of pictures. --Scott

Wynn in her surgical gown before the operation, looking very much like a little yellow duck...


Being comforted by her mama yesterday afternoon. The no-no sleeves are just Velcroed around the arm, but are rigid enough to keep the elbow from flexing. She of course figured out how to get out of them at about midnight last night.

The Night

She can sleep for about 45 minutes at a time and then wakes up crying.

They've written orders so she can have morphene every two hours now to help control the pain.

She was up vomiting during the night - bloody drainage that she's been swallowing. She hasn't had any food or drink yet. It seems to hurt a LOT when she swallows.

She's on an IV, so she's going through diapers like crazy.

The plan was to take her home today, but that's up in the air at this point.

Wish us luck.

Ann

A Brief Update

We left for the hospital at 6 this morning and just got home. I'm a little tired right now, but I wanted to get an update everyone on the surgery.

Her surgery went well. There were no complications, and she ended up sleeping in our laps pretty much the entire day. She's having some problems with the pain; her palate repair was bigger than what they usually see, so the tissue really had to be stretched - ouch! Before I left tonight, the surgeon gave our nurse the okay to continue giving Wynn morphine through the night to help ease the pain. Hopefully, she'll get some good sleep tonight and will be more herself tomorrow.

During the times when she was awake today she was strong - sitting up by herself, kicking her feet to complain about having her diaper changed, showing some interest in watching Curious George on TV. She HATES the no-no sleeves, which we expected going in. The staff in the recovery room told us, "Wow! She woke up mad. We gave her morphene thinking it was just pain, but she's plain old MAD at those sleeves." Yep. Totally saw that one coming.

I made it through the day without actually crying, but I did well up when:

• I was holding her and started to wonder whether her foster mom had been there to hold her after her lip repair surgery in China.

• We walked into the recovery room, heard her crying and immediately realized that her "voice" had changed. It makes sense that changing the size and shape of her mouth would change her voice, but we hadn't thought of it until we heard her.

• When I got home tonight and didn't have her with me.

We're hopeful that she'll be able to come home tomorrow, but we'll just have to wait and see. We'll post more details and an update (and pictures of her in the much loathed no-no sleeves) later tomorrow.

-Ann

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.