Ying's second time having surgery

by WanYing

A little background from Mom: WanYing was born with limb differences caused by Amniotic Banding Syndrome. Her right hand was most affected and shortly after coming home at age two she had hand surgery to free the fingers of her right hand. WanYing's right thumb was very short and at the time of surgery her hand doctor told us that in time we might want to lower the webbing between the thumb and first finger of her right hand to give her thumb more relative length. 

This summer at her yearly hand checkup, WanYing's hand doctor said she thought this was a good time for the touch-up surgery. WanYing had been asking about having the first two toes of her right foot separated as well and her doctor said that she could do both surgeries together.

The bandages just came off and WanYing is getting used to her new digits - here's WanYing's description of the experience.

WanYing's hand and foot before surgery

I had surgery before but now I got surgery again so I can use my thumb better. Before surgery my toe was stuck together but now it's not. And on my hand that got surgery my thumb was very short and now it's bigger.

One time when I had my other surgery every one except my pinky was stuck together but then I had surgery and then it was not stuck together.

It feeled weird when my dad played with it where my stitches were. It felt weird because it was my first time having something between my fingers. [This part was really funny - she was so sensitive to having Band Aids put between her toes because he had never experienced the sensation of anything between those toes before!]

I got to play with Play Doh before I had surgery. Playing with Play Doh made me feel great and there was also like a frigerator and it had food shapes in it so we could make Play Doh stuff. And they said that I hadded to take the Play Doh home so now I have new Play Doh! [The Shriner's Hospital staff did such a great job of helping WanYing feel comfortable and secure!]

Then after the Play Doh I changed in the bathroom into my doctor clothes. I got to bring McGillicuddy to hold.

Then we got out our blanket and they set the bed down and then I hopped into the bed and then they gave me sleeping medicine then I went to sleep. [WanYing definitely doesn't remember this picture - she was pretty doped up by this point!]

And then I was asleep for a while and when I was asleep they did surgery.

And then I woke up and I had a chicken soup and I had Goldfish - and I had two packs of goldfish. And then we went home

And now we're at home taking our pictures of my foot and my hand. The bandage is off my hand and my foot

My thumb's bigger now and I feel great because now I have a bigger thumb

Adaptive Cross Country

Long-time followers of the Morningstar Happenings know that the ever-fabulous Miss WanYing was born with Amniotic Banding Syndrome (ABS) causing limb differences in both hands and her right foot.  The good doctors at Shriners Hospital were able to use their skills to loosen the fingers of her right hand, leaving her with some shorter fingers and a very short thumb on her right hand.

WanYing has learned to make her hands work for her and it's unusual for her to need any help in coping with her unique digits.  She can do up buttons and zippers, use forks and pencils, climb ladders, even hang on monkey bar rings.

But now that WanYing is getting big enough to ski on her own, pole grips have become an issue.  I mean, poles are a big enough challenge for your average almost-five year old, but combining the normal learning curve with a shorter finger and thumb was leaving our girl frustrated.

Enter the good folks at the Sundance Nordic Center!

We were up at the Nordic Center a few weeks ago with some friends and one of their kids had a broken finger. Instead of equipping him with regular grips that require the user to grasp with thumb and fingers, always-awesome Cami set him up with skate grips that Velcroed around his cast. And as soon as I saw that, my eyes got very wide and very excited - I had never considered using skate grips with WanYing!

We chatted with the Nordic center folks about our options and Sam and Cami, the Nordic Center saints, scoured their supplies to find grips that were small enough for WanYing.  They mounted the grips to their smallest set of poles and, voila! perfect, custom-made WanYing poles!

Big thanks to the fab folks at the Sundance Nordic Center for finding a creative solution for WanYing's adaptive cross country needs! Today, learning how to use poles, tomorrow Olympic biathlon!  Or, at the least, many years of fun family outings.

Girl Medical Update

You know that things are humming along smoothly(ish) in Morningstarland when it's been four months since our last medical update!

WanYing had a checkup with her hand doctor at Shriner's earlier this month and her doc is very happy with her progress.  Dr. Wong is satisfied with the healing and mobility that WanYing has gained with her new hand and right now doesn't recommend any additional surgeries or even any physical therapy other than continuing to encourage her to use both hands as much as possible.

Sasha had her normal yearly panel appointment up at the Primary Children's Hospital Craniofacial Clinic a couple of months ago and her plastic surgeon, pediatric dentist, and ear-nose-throat doctors are all still very happy with her palate closure and the way her jaw is growing in. 

The orthodontist warns us to prepare for large orthodontic bills in our future :)

Also, Sasha's plastic surgeon thinks that Sasha is tongue-tied enough to warrant the little surgery to free her tongue.  Right now, Sash can't even lick her top lip, which can definitely interfere with her ability to make certain sounds.  So we're expecting to do that itty bitty surgery sometime within the next few months, but don't have any dates set yet.

The cool thing on the Sasha speech front is that Sash recently qualified for a cleft palate speech therapy study through the University of Utah.  The study was tailor made for us - preschoolers with cleft palates who can fail a speech test and pass a cognitive test.  Ding ding ding!

So, now that she's done her testing and baselines, in a couple of months she'll start speech therapy - twice a week, in our home, for ten weeks for free.  Wahoo!  She'll be pronouncing all of the letters in, "Sam's Fast Fan" in no time!

And that's about it for now.  Our girls are mercifully healthy and generally happy and we're budgeting far fewer for copays in 2012 - here's hoping!

A Whole New Hand

Today was the big day!  Goodbye, stinky disgusto cast, and hello new hand!

I think all casts probably smell not-so-fresh after a month, but toddler casts?  Uck.  Toddler casts after soaking them for an hour so they're easy to remove?  Unbelievably uck.  Seriously, words do not describe.

Anyway, [trying hard not to fixate on the memory of the stench] the cast removal was super easy and rather unceremonious.  I guess after living with that thing for 4 weeks, I expected some sort of drama regarding its removal but (thankfully) there was none - the nurse cut it open and WanYing pulled her hand out easy as pie (that's why you soak it, so that the bandages don't stick)!

Admittedly, and unsurprisingly, the hand looked kinda grosso at first.  I mean, a month's worth of dead skin and surgery scabs is kind of destined to look icky.  But even amid the yuck the miracle was right there before us - a thumb and four fingers, all free!  Amazing!

At first, WanYing was fine with it.  I think that she was just relieved to have that blasted cast off.  Then she kind of freaked out.  I think it was all just (understandably) too much for her - she didn't want to look at her hand and just nestled in my arms for a few minutes. 

But once the shock subsided,  she started poking those fingers and moving them around, rubbing off the ick, and insisting on washing her hands.  She is simply amazing - if I took off a cast to find a whole new hand, you better believe that I'd need more than a couple of minutes of cuddling to get used to the idea!

I love this picture - can't you just see the wheels turning in her head as she makes sense of all this craziness?

The whole thing was so ridiculously easy.  Dr. Wang checked her out and gave us the all-clear with the simplest of instructions - we're supposed to rub the scars with vitamin E oil to help them subside and help her fingers to be less sensitive, we need to encourage two-handed activities, and we need to give her a variety of textures to play with to help her new fingers and now-exposed palm to be less sensitive.  Oh, and she has a silicone spacer (basically a cast of her palm) that she's supposed to wear at night to help her hand stretch and provide pressure for the scars so that they heal nicely. That's it!  We come back for a checkup in 2 months and may need to do OT at that point, but for now we just get to let her be a toddler and figure her hand out on her own.

WanYing was a little extra fussy and clingy tonight, but other than that was no worse for the day's adventures. We headed to Red Butte Garden for a quick picnic lunch and then it was back to life as usual.

She still favors the pinky, of course, but check out those gorgeous new fingers!

It was tough to get a photo of her open hand, but here it is!

A close-up of her new hand!  If you need a reminder of what her hand looked like before, check out, "Sticky Hand No Longer?"

She is so beautiful - hands, feet, face, the whole package!

WanYing, you are simply fabulous.

Sticky Hand No Longer!

Bye bye, pinky wave! And hello, high fives! We left the house at 5 am today with one "rosebud" hand and returned at 3 pm with five separated (albeit heavily bandaged) fingers!

The surgery only lasted about 2 hours and they were able to successfully separate her thumb and three adhered fingers without a problem.  It turns out that each of the fingers did have space separating it from the others, so that made the procedure a lot easier.  The surgeon showed us pictures of her hand post-op and it looked great - four stubby little fingers where one ball-o-finger once was.  We can't wait to see it in real life in a few weeks!

WanYing was a cherub pre-surgery... unfortunately, she must have used up all of her sweetness reserve because she was mad for the rest of the day. I would be, too, if my hand hurt and was all wrapped up and I had strangers checking on me every 20 seconds and a stupid IV in my foot. The nurses kept commenting that she was, "very strong" and "quite the fighter" and they're right! Those are traits that will serve her so well in life... but wrestling a furious (and strong) two year old for hours does wear a mommy out.

She pulled it together long enough to wolf down a tangerine and a yogurt and that was good enough for the staff - they said she was stable enough to go home and we were out of there!

(this is a photo taken during one of her blessed, blessed moments of quietness)

Her hand is all bandaged up in a "tape cast" that they'll remove at her follow-up appointment on June 6th.  I'm not exactly sure how we're supposed to keep the cast clean and dry for four whole weeks, but we'll do our best.  It is admittedly nice that she has something she can't unravel herself because you know she'd be picking at it if she could.  Oh, and the funniest part of the cast is that they left her super pinky out!  So we get to enjoy pinky waves for just a little while longer :)

Hmm... she looks really content in all of these photos. That's completely unfair. I guess the ones where she was writhing and windmilling her arms and legs didn't scream "photo op" to Steve and me at the time. Or maybe there really were more happy moments than I remember - those angry-baby times do stick in a Mommy's memory.

We're home safe and sound now. WanYing has been (understandably) cranky, but the 1-2 punch of ibuprofen and Tylenol is keeping her pain manageable. She's a fighter, this one - and I mean that in all of the best ways :)

Can't wait to post photos of her new hand in June!

Sticky Hand No Longer?

On Monday we had a very successful first consultation up at Shriner's Hospital and it looks like WanYing's sticky hand may not be sticky for much longer! We are blessed to have a Shriner's Hospital so close with a specialty in orthopedics and met with a hand specialist and orthopedic specialist on Monday. We heard lots of phrases like, "classic presentation of constricting bands" and my new favorite label, "rosebud hand" (an apt description!) and at the end of our couple of hours at Shriner's we were counseled that:

1. WanYing's left hand and toes don't need any intervention (hooray!)
2. The indentation of a band on her right calf isn't causing any problems and unless it starts applying pressure and she starts walking on the outside of her right foot, it shouldn't need any loosening (hooray!)
3. It's a good time for surgery on WanYing's right hand (hooray!)

The hand doctor was very impressed with how well WanYing uses her right hand now and we're all excited to see what she'll be able to do once that thumb is freed.  When we started talking about surgery, they said that June is pretty booked up, but they have space in May - so next Monday WanYing will go in for surgery!  Oh my goodness!  At least we get a full 2 weeks between children's surgeries :)

So, here's the plan:  They will definitely free her right thumb and ring finger, and then depending on how fused the pointer and middle finger are, they may or may not separate those two right now.  The doctor said that there a lot of blood vessels between those two, so if they're super-fused right now (ok, she didn't say "super-fused" but you get the idea) then they'll just leave them alone for now and separate them later.  But, if they're already mostly separated, then she may come home with five free (albeit four of them short) fingers!  Wowsers!

Oh, and it as long as there are no weird complications with surgery or anesthesia, WanYing should be able to come home Monday night - isn't that amazing?!?

It's kind of a funny feeling... we know that this is best for WanYing, but we're also keenly aware that we're losing something as well.  It's a lot like how we felt about Sasha's cleft palate - this is a part of her, and has been a defining part of her for her entire life.  And now all of that is about to change.  Good change.  But good change that still comes with some loss.

But WanYing is already reassuring us that this is right. Sunday night, the day before her appointment, while I was putting her to bed, WanYing kept holding my finger and trying to drill it into her sticky hand, as if we were going to separate the fingers right then and there.  I know she doesn't know what's happening, and I know that there is going to be a lot of pain and a lot of really hard work in her future as she figures out how to use her new hand - but I'm grateful that she's already starting to understand that those fingers are going to come apart.

Monday is going to be a big day.

This may be trickier than I anticipated

Today we spent a lovely afternoon at the park, enjoying the last few hours of warm weather before the forecasted cold April shower sets in.  We played on the swings, tried to give Mommy a heart attack with our climbing antics, toppled down slides - it was great.

As we got home, some neighborhood kids were playing outside and came over to meet WanYing.  It was all going well until I heard the shriek of, "Aaah, what happened to her hands?!?"

Realizing with my keen parental senses that it was time to intervene, I joined the knot of seven-year-olds as Ben was doing a great job explaining Amniotic Banding Syndrome.

I lost track of Ben's explanation as a boy looked at me and earnestly said, "I was just wondering if she was an alien or a child."

Great.  Seriously?

I mastered my initial urge to thwack his head and explained that she is very much a child and that these are just the hands she was born with, that it doesn't hurt her at all, and that her hands work for her in really amazing ways like her "super pinky."

The conversation went better from there as the whole group really latched onto the "super pinky" concept (seriously, if there is a place in the Guiness Book of World Records for World's Strongest Pinky, I think WanYing is a strong contender).  And as the kids walked away, the girls in the group enthusiastically agreed that when WanYing goes to school everybody's going to think she's the coolest kid in the world and that she's already super-adorable.

I walked away wanting to cry.

I know, I know, the idiot boy meant no harm, he was just candidly expressing his reaction and concern.  I know that this is just the first of many such encounters.  I know that through my answers I am equipping all of the kids to answer such "questions" with accurate information, patience, and love.  I know that we knew that having somebody in the family with more "obvious" need would expose us to lots of extra attention.  I know that we decided (and continue to decide) that we are more than up for the challenge.

But right now my heart just aches for my little girl who will someday have to face (a minority of) people who have trouble seeing past the ends of her arms.

Day 9 - Flight to Guangzhou and Sticky Hands

Today we flew from Nanchang (WanYing's province) to Guangzhou (where the US Consulate is, so we can finish up WanYing's visa and head home). The first 80% of the flight was just fine. The non-stop screaming and writhing for the last 20 minutes was sheer horror. Mom is still recovering. WanYing was fully recovered as soon as we left the plane. Sigh.

So, rather than reliving any of today, we will strive to forget this day and talk instead about WanYing.
We haven't talked much about WanYing's limb differences yet on the blog - the truth is that it's really been no big deal and there's not much to tell!

For those of you who are new to our blog, we'll catch you up. WanYing was born with Amniotic Banding Syndrome (ABS) effects on both hands and her right foot. ABS is where bands from the amniotic sac slough off during gestation and work their way over the developing baby's extremities. The baby grows and the bands don't, so the area within the band gets choked off.

In WanYing's case, her foot is only a little effected - her big toe is short and the next two toes are adhesed where the band was. Her left hand has a fully-formed thumb and two fingers, with the pointer finger and middle fingers shortened and adhesed. And her right hand has a fully-formed pinky with the fingers and thumb all bound together.

Folks have asked about surgical options, and we have an appointment at Shriner's in May to see what they think. I wouldn't be surprised if they want to "loosen" (in our experience this is the word that surgeons always use in place of "cut apart") the banding on her right hand so that she has more dexterity with the shortened fingers, but we'll see.

The limb differences don't slow our gal down one bit. She has amazing dexterity and can grasp objects with both hands (read: can and regularly does eat watermelon slices double-fisted) and is walking and even running just like your average two-year-old.

Sasha inadvertently coined a great name that we'll use for WanYing's hands and foot when we first met and she asked why WanYing had "sticky fingers and sticky toes." Isn't that a great neutral, family-friendly term? So now we regularly refer to WanYing's "sticky fingers" as a way to normalize this new aspect of our family life.

Today's prayer request:
It was so heartbreaking today to see our girl uncomfortable and afraid and not yet ready to turn to us for comfort when things got really hard. We know that bond grow slowly and that it's totally natural for us to need to earn WanYing's trust - after all, we haven't even known each other for a week and she is enduring more change and transition right now than any little girl should be asked to bear.

Please join us in prayer that our relationship will grow at just the right speed - not too fast and not to slow - and will be built on the firmest of foundations. Pray that WanYing will learn to lean on us when the going gets tough and the world is heartbreaking and that we will, in turn, teach her to always trust in the God who will never, ever fail her.

Gong Xi Fa Cai!

Happy Chinese New Year!

You're probably sick of hearing about how God has knocked our socks off throughout our adoption processes, but tonight we enjoyed one more gigantic blessing - there's Utah Valley group of China adoptive families! That's right, our very own white bread Utah County, where few can even pronounce, "Kazakhstan," is home to several dozen kiddos from China! We found out about this group just this week and were fortunate enough to attend the Chinese New Year party tonight.

We had a great evening making crafts and watching ribbon dances and parading around the room in dragon hats and trading red envelopes and (of course) eating plenty of Chinese food. But the best part was knowing that WanYing will have opportunities to make friends with life stories a whole lot like hers. We even met a family whose four-year-old daughter has ABS-affected hands a lot like WanYing's - that means that she can have a friend who not only shares her social and ethnic story but even understands what it's like to have hands that don't quite blend in!  What a gift.

Tonight was a wonderful first Chinese New Year for our family, and we sure look forward to celebrating a lifetime's more of them.

Ben participates in the "Lion Dance" - I'm fairly sure this is a girls' hat, but he still wears it well.

Sam plays a the role of the "dragon's butt" compellingly in the Lion Dance.  Oh, and after reading the Wikipedia article, I guess this he's a "lion butt" not a dragon butt... such an embarrassing snafu

We attempt to take a kid pic.  For some reason, the children all decide to pose as "thinkers"

The mystery of who taught Sasha to cross her eyes on command is solved.

Happy Chinese New Year!