Sasha's Braces

by Sasha

A little background from Mom: Sasha was born with a wide cleft palate. We had the cleft repaired when she came home at age 2, but as a result of the cleft her teeth enjoy a rather creative and chaotic arrangement (chaos and creativity being a hallmark of basically every aspect of Sasha). We've known for a while that Sash would need substantial orthodontic intervention, including a few rounds of braces and eventually implants to take the space of some adult teeth that forgot to form. This summer Sasha had an expander installed to help give her mouth some extra space and last week in came the first round of braces! The following is Sasha's description of the experience.

When I got my braces I didn't like it when they put the expander out 'cause the blood was coming a little bit but I rinsed it out. And then I was excited because I could feel the top of my mouth!

When they put the braces on it feeled a little weird because it hurt a little bit 'cause when you get braces it will hurt a little bit. It was like ticklish-hurtiesh.

I'll have braces 'till summer probably. That's what I think. [Mom's note: as long as she means that she'll be done with braces in summer 2035, I think our expectations are aligned]

When my braces come off my teeth are gonna look straight and neat. [Agreed!]

Big Smiles

This weekend we proudly and enthusiastically participated in our first charity run as a family.  Ok, there was a charity (Operation Smile) and there was running (kids chasing each other), but technically we just completed the family-friendly 1-mile walk and then ate roughly a thousand orange segments each to recover from the "exertion".

The morning was a complete success - we enjoyed a beautiful autumn day in the Utah mountains, raised a little money for a charity we're definitely passionate about (go cleft palate kids!), and each of us got a mile's worth of exercise.

Oh, and as an added bonus we were surprised to receive a bottle of Tahitian Noni juice as a thank-you gift for adding Sasha's story to the very thoughtfully displayed stories of local kids affected by cleft palate.  We're trying to choke it down, but have yet to experience the miracle powers of the noni juice.  We'll keep you posted as to whether or not the "iridoids" ("powerful phytochemicals produced by plants as a defense against infection and other health threats" - see the Tahitian Noni - Science web page) make a marked difference in our health and well being.

First Loose Tooth - Yikes!

Wednesday morning, 7 am:
Sasha runs in to Mommy's room:  Mommy, Mommy, I have a loose tooth!

Mommy tries to overcome her normal morning haze/denial that a new day has dawned quite so early:  Wha?

Sasha, undeterred my Mommy's slow uptake: Yeah, look!

Sasha violently wiggles not a middle tooth, but the tooth to the right side of the center two.

Mommy chokes down the panic that her four-year-old definitely has a loose tooth, and it's definitely not the tooth that's supposed to be loose first.  Trying not to alarm her child or squealch her enthusiasm for this monumentous day:  Oooh, yes, that is definitely loose.  Wow.  Ok, sweetie, let's just not wiggle it any more until we talk to the dentist, ok?

So, it turns out that one of Sasha's front adult teeth is coming in.  Strike that - it's in.  But it's behind her baby teeth, so it didn't push out the baby tooth in front and instead it made the one to its left wiggly.  In the words of the pediatric dentist, "Hmm... I've never seen one come in so early, or so far back." 

Great, just what I wanted to hear.

But wait, there's more!  Sasha is also missing an adult tooth - actually, the tooth that's wiggly is the one missing it's grown-up replacement.  Fortunately, her other front tooth seems to be coming in on the normal trajectory and timeframe (it should come in when she's about 7, instead of 4).

It's really no biggie.  Given the complications that could have been present with Sasha's cleft palate, these are all very manageable issues that, between orthodontia and implants (if needed) really won't affect her much.  It's just not something I wanted to deal with right now :)

The short-term plan is to extract the front two teeth to give the new adult tooth space to come in and hopefully work itself forward naturally.  She is going to have quite the adorable jack-o-lantern smile for a while!   Sasha is thrilled that Tooth Fairy (or, "Fairy Tooth" as she calls her) is going to come give her three whole dollars very soon.  And I'll just continue to be grateful for dental insurance.

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!

The answer to one of life's age-old questions

Question:  Can a kid get brain freeze even if the top of their mouth had to be surgically created?

Answer:  Yes!

Actually, this is a question that Steve and I have pondered off and on for the last two years. And now we know. And knowing is half the battle.

Princess Sasha Update

The past month has brought several doctor's appointments for our Princess Sasha and we are very happy to report that our little Cinderella is doing marvelously well.

First came her panel clinic up at Primary Children's Medical Center. This is the twice-yearly appointment where she sees her craniofacial doc, ENT, speech pathologist, and pediatric dentist all in one massive waiting-room-filled day.

The results were all stellar - Dr. Siddiqi confirmed that her cleft is still closed and looking great (that is, looking decidedly un-clefty) and he sees no revisions in her future (hooray!). Dr. Muntz confirmed that her ear tubes are still in place and looking a-ok. The speech pathologist was blown away by Sasha's progress (in her words, "what speech delay?" - there is no sweeter prognosis to a mama's ears than that!).

The dentist is very pleased with Sasha's jaw growth, although he still sees braces in our future :) But judging by Sam's jack-o-lantern smile, Sasha's not the only Morningstar kid who will enjoy the railroad tracks. He also confirmed that Sasha's jaw is growing in from its original 7 mm deficit, which is awesome. We've been a-hoping and a-praying that Sash's body would kick in and correct itself and it looks like it's doing just that. Hooray!

We've been concerned for a while (ok, since Sasha got home) about Sasha's sleeping. She occasionally gets night terrors and snores like a middle aged fat guy, neither of which seem particularly healthy. We've mentioned it a few times to the ENT and finally decided to do a few tests to make sure that Sasha is getting the rest and oxygen that she needs at night. Did you know that you can do pulse-ox studies at home now?!? Wonder of wonders.

So a few weeks ago Steve picked up the O2 monitor and we taped it on our sleeping girl's finger and we just got the results. Dr. Muntz confirmed that Sash is having a few periods at night where her pulse-ox dips and it's probably disturbing her sleep a bit, but it's a borderline condition and he feels like any intervention is probably more disruptive than just letting her grow out of the condition normally.

It's great to know that our "this doesn't seem quite right" parent-sensors are in-tune. It's also great to know that her situation doesn't beg machinery or surgery right now. We'll continue to watch (listen to) our little princess and make sure that things aren't getting any worse, but as Sasha's chin grows out it should make more room in her nose and throat and hopefully the apnea corrects itself.

And lastly came Sasha's three-year-old checkup with her pediatrician. Sash is continuing to make progress on the charts and Dr. Kendall was pleased with her progress. Sasha weighs almost 30 pounds, putting her in the 30th percentile for weight. She came in at 35 inches tall, which is the 5th percentile, but Dr. Kendall wasn't worried about the height because toddlers are notoriously difficult to measure and she felt like Sasha's proportions look healthy.

So, our princess is looking good inside and out, and we're happy and grateful parents!

And, yes, even the most graceful princess ends up on her bum after too much fanciful twirling.

P is for Pigtails

We are making considerable headway in girlyhairland - today I came home from work to find my baby in pigtails! They were completely adorable for the five minutes they lasted and I have renewed hope that we will, some day, learn to keep Sasha's hair out of her eyes.

Progress with the letter p, however, is not moving along as swiftly as we had hoped when we first blogged about it almost two months ago. Speech therapy is hard, frustrating work!

Sasha's general communication skills continue to grow by leaps and bounds, but her mouth hasn't caught up with her brain yet. Two months of intensive work on p has resulted in a very clear "puh" as long as she whispers it an doesn't try to pair it with any other vowel sounds. Up is still "uck," apple is "aggl," and purple starts with a b. We know that she'll learn to use that palate eventually, but for now p is our nemesis.

Sheesh - nobody told us that teaching our child English phonemes with a reconstructed mouth was going to be so much work! Good thing we have the adorable pigtails to keep us going.

Adopting a child with a cleft palate

We are part of a cleft palate support group here in Utah and recently wrote up this little explanation about our experiences as adoptive parents of a child with a cleft palate for use on the group's truly fantastic blog.

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Parenting is not for the faint of heart. Adoptive parenting is for those with extra guts. And adoptive parenting of a child with a cleft palate? Well, that's left for those with an extra well-developed sense of adventure.

In January 2009 we traveled to Karaganda, Kazakhstan to meet and welcome 22-month-old Alexandra Grace Morningstar into our family.

Sasha (short for Alexandra) was born with a wide bilateral cleft palate and (maybe) with mild Pierre Robin Sequence (PRS) and spent most of her early childhood in hospitals and the Botakoz Baby House. When we first learned about Sasha's cleft palate, we were torn - we knew that this was an easily correctable condition here in the US, but we also knew that it compounded the scads of the unknowns that are intrinsic to adoption. So we started researching.

After talking to families in similar positions to our own, researching on the web, and talking with the cleft palate team at our local children's hospital, we learned the following:

• These kids are survivors. Our daughter would not have lived through her challenging early childhood without a strong will to survive (and believe us, she is strong willed!). Orphans with clefts have learned to successfully navigate their environments without a lot of special treatment from the world around them.
• Cleft kiddos have learned to make feeding work for them despite physical challenges. You are not going to break them and they're not going to starve when you get home just because you don't know the first thing about cleft palates. They have mastered their own feeding techniques, which often include shaking their heads to move food around their mouths, because they can't use their palates for leverage
• Don't be too worried about early childhood delays. Because of a far harder-than-average start in life, it is normal for cleft orphans to be very small and significantly speech delayed. "Normal" delays from institutional care can be compounded by the cleft palate. Our daughter was a mere 14 pounds at 18 months of age and had only one discernible word when we met her ("kukla", which means doll in Russian). In the past months her vocabulary has simply exploded and her words become increasingly more discernible as she learns to use her "new" mouth and works with her speech therapist.
• You probably just have to accept that you'll never know what caused the cleft. Maybe you'll get some family history that can help you understand what happened, maybe genetic counseling will help you diagnose the root cause, but most likely it will be a part of your child's biological and gestational history that you'll never really have the answers you want. Many biological parents of cleft kids walk this path as well.

If you know about your child's cleft before adoption, you have the opportunity to prepare in many ways:

• Research your medical insurance and get your insurance ducks in a row before traveling
• Choose a hospital and surgeon. After examining your child they will finalize the treatment path, but choosing a surgeon before travel will eliminate one more to do item when you return, exhausted and overwhelmed, from your adoption travels
• Learn baby signs. Depending on your child's age, we definitely recommend learning and using sign language with your child. Sasha had physical impediments to speech, but she latched on to sign language within our first few weeks together and still often uses signs to communicate. Using sign language with Sasha was a godsend.
• Talk with cleft adoptive parents. They will encourage you, remind you that you are up to this challenge, and share their own tips and tricks that were helpful in their first months home with their child. You can find other cleft adoptive parents through Yahoo and Google groups and your domestic and international agencies.
• Be real with yourself and have extra grace for your spouse. Try to mentally adjust to the idea that you will probably have more than "average" (whatever that means) difficulty in your first few months home with your child. The fatigue and simple overwhelming nature of bringing a child into your home will be compounded by doctor's visits, surgery, speech therapy, and lots of chocolate running out of your child's nose before the cleft is repaired (this is adorable, by the way). It's hard. And it's worth it.

Welcoming Sasha into our family had been one of the most incredible and rewarding experiences of our lives. If you have the opportunity to adopt a cleft child, we definitely recommend that you evaluate and seriously consider your ability to care for this little one's medical, physical, emotional, and spiritual needs. And if this is the right path for your family, then go for it! Your child will teach you how to care for her, your doctors will guide you through surgery and therapy, and each member of your family will be richer and deeper for the experience.

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If you'd like to read more about our cleft experience, here are some blog posts that can walk you through the journey:

• Our first post from Kaz about Sasha's cleft
• Scheduling and explaining her surgery
• First meetings with the ENT and speech therapist
• Surgery day!
• Our day in the hospital
• Released from the hospital
• Two weeks post-surgery checkups
• Speech therapy
• One year post-surgery checkups

Brought to you by the Letter P

It's been a while since we blogged about Sasha's Adventures in Development and it seems high time for an update!

We've (ok, really it's just been Steve, I deserve no credit in this portion of Sasha's journey) been meeting with representatives from a local early intervention program, Kids on the Move, for the last few weeks and the experience has been really positive. Sasha's initial assessment was really positive, noting on-level development in gross motor, social-emotional, and self-help skills; very minor cognitive and fine motor delays; and then more substantial delays in receptive and expressive language. These delays came as no surprise to us, considering her 2 years of institutional care, a new language, a new mouth, and hearing issues because of the cleft that weren't resolved until May's surgeries! And the fact that the specialists agree that she is completely on-level socially and emotionally just blows me away. Our little girl is such a wonder.

So we have a general specialist (is that an oxymoron?) coming every two weeks and a speech therapist coming once a month and then in a few months they'll do another evaluation and decide on next steps. Right now we're working on the "p" sound, so this is Sasha's Pail of P's (puppy, tape, slipper, pillow, etc). Given potty training, the emphasis on "p" is a bit unfortunate... but I'm sure Steve will recover, eventually, from the emotional trauma of it all.

Sasha Update

Sasha had her two-week update with the Cleft Palate Team up at Primary Children's today and we are proud to say that she's doing great on every metric! Her mouth is healing really well and she only has three sutures left to dissolve, so the plastic surgeon was really happy about that. Her audiology scans went well every indication is that her hearing is just fine now that she has ear tubes. She even made a "duh" sound for the speech therapist - the first time we've ever heard her make that sound!

This is all a great encouragement to us because, although we were pretty sure that everything was healing well, it's always good to hear it from the experts. I had this lingering back-of-the-mind fear that something would go wrong with the palate healing and that she would have to go in for surgery again. I knew, of course, that this was highly unlikely, but again it's good to get confirmation and affirmation.

The only slightly worrying news is that the orthodontist is concerned aboutSasha's lower jaw and there's potential she could need jaw surgery when she's 5 or 6 years old. We actually knew this was a possibility because Sasha's plastic surgeon advised us early on that she might have PRS - Pierre Robin Sequence. That's a sequence of birth defects that leads to a small lower jaw, a wide cleft, and a tongue that can ball up in the back of the mouth and cause airway problems. Fortunately, Sasha doesn't have any airway problems and if she does have PRS then it's a very mild case, so there's a good chance that her lower jaw will just eventually catch up and she'll be fine without surgery. Otherwise, we'll just cross that bridge when we come to it.

I have to say that I'm glad to have good old happy silly Sasha back... those first couple of weeks were really rough. I definitely wouldn't recommend having your palate reconstructed... unless you need it in which case I guess I would have to recommend the surgery :)

She was just mad about everything - eating, sleeping, not being allowed to pinch her brothers. And it wasn't normal two-year-old mad, it was pretty awful. But she's been totally off of painkillers for several days now and is doing great. She's eating and giggling and smiling again and pinching a little less frequently (ok, that part may be the natural two-year-old). It took about two weeks for her to sleep through the night again, but now she's sleeping like a champ. And as you can see she's even up for helping Mommy in the garden! Good thing, too, that mulch really needed to be rearranged with a trowel.

She's been making lots of new sounds, which is such a thrill, and over the past few days she's been babbling and mimicking up a storm! Every time she walks out to the car she chants, "uh un" (shotgun!) so she's already figuring out the major rules of life as a Morningstar. Her sounds get a little clearer every day and she has even started singing! There's a "yah yah yah" song that they used to sing at the baby house (it's the only one we can remember the words to :) and she now sings it exactly on pitch! It's one of those things that I never realized she wasn't doing, but now it's such a joy to hear.

Listening to your daughter sing for the first time is a pretty amazing experience.

Sasha Released!

We got home at 4 pm today - fewer than 24 hours after Sasha went into surgery! She was doing so well that the docs and nurses agreed that we could take her home as long as we are careful that she drinks plenty of fluids and stays hydrated. Wahoo!

Sasha obviously did really well in the hospital today - Dr. Siddiqi's resident checked in on her in the morning, removed the despised tongue stitch, and remarked one more time on the width of Sasha's cleft (do you detect a theme?). She enjoyed some Spaghetti O's for lunch and after that they removed all of her monitors and wires so that we could go on a walk and enjoy some freedom. And once Sasha realized there was a big wide world outside of her hospital room, there was no going back! She ran up and down the corridors and had a blast greeting the various dogs that were visiting to cheer up the kids. They even let us give her a bath to wash off all of the gunk from the previous day. The only times she got mad were when we tried to prize the yogurt cup from her vice-like grip (she kept dozing off and spilling the yogurt - gross) and when we tried to get her back into the room after our walk - no way was she going back in there!

So a little after 3 pm we packed up and were out of there! As you can see, Sasha was a little groggy in the car, but she had a nice nap as we drove home from Salt Lake and filled her many prescriptions and she perked right up as soon as we got home and she saw her brothers.

And here's our "sick little girl" this evening - can you believe it?!? She comes home 24 hours after having her mouth hacked apart and decides to learn to climb up the ladder to the playset all by herself! She just amazes me. I fear that she may have inherited Ben's monkey-climbing gene (I believe that's carried on the paternal side). Don't worry, we'll keep her off of the really high acrobatic equipment until she's off of the loopy pain meds.

Here are a few other shots from our happy reunion this evening:
Ben shows off his apple-tree dismount

Sasha eyes up the next trick on her list of things to learn

A pleasant evening swing - now this is the pace befitting a little girl who just came out of surgery!

Quick Sasha Update

What a difference a day makes! Sasha is still pretty groggy from the Lortab (blessed, blessed Lortab) but she's been eating pretty well and has discovered a new passion for Fig Newtons, as you can see from the picture.

We had a pretty decent night's sleep, despite the beeps and vitals checks and all of the other lovely things that they do all night in the hospital. Everybody seems optimistic that we'll be able to go home today, so we'll see how that all turns out.

Sasha has one stitch that they'll remove today that's keeping her tongue from falling to the back of her mouth with all of the swelling (this is standard - it's the string you can see coming out of the side of her mouth). After that, they'll decide if she's healthy enough to go home! We definitely appreciate your prayers for rest and recovery. The folks here at Primary Children's have been great, but there's no place like home.

Cleft No More

Today will not soon be forgotten in the Morningstar family! It started well and ended well... the middle part wasn't quite so good but hopefully that part will fade from memory quickly.

Sasha's surgery was scheduled for 2:30 pm and she wasn't allowed to eat all day. I thought that would be truly awful, but to be honest it was rather disconcertingly fine. Steve has a theory that since her meals were so regimented at the baby house, she hasn't yet learned to listen to her body when it comes to being hungry and full. I'm not sure if that's true or not, but you would think that a two-year-old would have strong negative opinions about not being fed all day and Sash just took it like a champ. We kept her busy and distracted and she did ask for food a few times, but surprisingly it was never a battle.

We got to Primary Children's Medical Center at 1:15 and went through the intake process just fine. We were told that the doctor was running a little behind (no big surprise there) and had a good time playing in the pre-surgery waiting room. Then we were told that the doctor was running a lot behind and we probably wouldn't get in to surgery until 4. Sigh.

But Sasha was fabulous. She happily blew bubbles, ate bubble solution (she wasn't supposed to eat or drink, but I don't think bubble solution counts), took rides in the little plastic cars, and otherwise occupied herself for the full 2 hour wait! What a kid.

At 4:00 she had a sedative and her craniofacial doc and ENT (Ear Nose Throat doc) chatted with us about the procedures. By that point she was really loopy and was happy to lay down in the wagon and go with the anesthesiologist. It was go time!

Steve and I made ourselves comfortable in the parent's waiting room and just a few minutes later the ENT came out and told us that the ear tubes went in just fine and she has infections in both of her ears (not super-surprising, that's the whole reason she's getting the tubes) but that the normal drops they prescribe after inserting tubes should also take care of the infection. One procedure down, one to go!

The cleft palate repair took another two hours, but it all went just as expected and the plastic surgeon was able to get all of Sasha's mouth parts into their proper place. He remarked again about how wide her cleft was - we just responded that when we Morningstars commit to something, we go all the way!

He was able to get the whole center part of her palate just where it belongs, which is awesome. Right now, it sort of looks like she has a strip of plate down the center of her mouth and she still has gaps on either side, but Dr. Siddiqi said that's normal and those gaps will heal right up in a couple of weeks without additional surgeries.

After meeting with Dr. Siddiqi after he was done with Sasha's surgery, it was time to go get our baby girl from post op. Begin suckiness.

As she was sedated, the swelling in her mouth from the operation started to obstruct her airway, so they gave her meds to wake her up from the anesthesia instead of letting her rouse naturally. Those meds immediately flushed all of the pain meds and sedatives from her system, which meant that she was feeling everything. I walked into post-op past this kid screaming bloody murder thinking, "wow, I'm glad that's not my kid" - you guessed it, that was my kid.

Of course, the choice between a breathing baby in pain and a baby who isn't breathing is an easy one to make! We spent the next two hours with a screaming, hurting, bleeding, restrained, miserable, and angry Sasha trying to calm her down and keep her blood oxygen levels up. It was awful. Really, beyond words, awful.

But we have a great nurse who worked really hard to find the right meds that were safe for Sasha and kept the edge off of her pain and by about 9 pm she had finally calmed down enough to sleep. Her pulse has stopped racing, blood pressure is normal again, her oxygen levels are doing great, and she's finally at peace.

So we're hoping that tomorrow will be a whole new day. She already had a few ounces of apple juice to drink, which is awesome, and we're allowed to feed her mashed potatoes if she wakes up and is hungry. The arm restraints come off tomorrow, which is fantastic because Steve and I were expecting her to have to wear them for weeks. We may be discharged tomorrow or we may need to wait until Friday, we'll just wait and see what tomorrow brings and how quickly she bounces back.

It's so funny - she already sounds different! Even her crying doesn't sound like it used to. Before surgery, I was sort of mourning her cleft. That probably sounds insane, but it's been a big part of the Sasha we know and love and I was sad to see it go. But now that I hear the beginnings of what her little voice is going to sound like (granted, those beginning were mostly screams, making it all slightly less touching) I know that this is right and good.

We definitely appreciate your prayers for good sleep tonight and fast recovery. It would be great to go home tomorrow, but if it's better for her to stay until Friday then that's ok, too.

Two More Appointments Down

Steve has been a busy Daddy this week and I think that all of Sasha's pre-surgery appointments are now done!

Yesterday was Sasha's assessment at with the speech therapist. Steve said that he really liked the therapist, especially because she was clearly very familiar with the specific challenges of cleft palate kids. I was hoping for some kind of rating (the perfectionist in me comes out!) so I could say that Sasha rated a 258 (not sure what that would be out of, it just sounds like a nice number), but apparently this therapist isn't going to appease my need to be graded. (Lisa Simpson: Look at me! Grade me! Evaluate and rank me! I'm good, good, good and oh so smart! [drops to her knees] Grade meeeeee!!)

The speech therapist confirmed our belief that Sasha's comprehension is progressing well. She understands simple commands and sentences and responds appropriately. The therapist didn't seem too worried about Sasha's limited vocabulary, especially since she can't physically make a lot of sounds yet. Once Sasha has fully healed (around 3 months after surgery), we'll go back to the therapist and start work in earnest. Until then the therapist gave us some materials and ideas to work on but we're not supposed to push Sash to make certain "plosive" consonant sounds (like "t" or "k") until then because the pressure apparently could mess with the sutures. Crazy, eh?

Then today Sasha met with the Ear, Nose, and Throat specialist who confirmed our suspicions that Sasha should have ear tubes. Sasha's ears aren't draining correctly, which is pretty common with her condition, and can interfere with her hearing. We haven't been able to get a really good hearing test done with Sasha, but the results of a test that they did at Primary Children's where a machine blows a puff of air into her ear to measure how the middle ear reacts was enough to convince the surgeon that she should have tubes put in. The procedure is called a tympanostomy tube surgery and you can read about it here.

Apparently Sasha's ears are draining so poorly that - get this - the doc could tell that she drinks a lot of milk because there's milk in her middle ear! Ick! Yeah, that was all the persuading I needed to go for the tubes.

They'll insert the tubes at the same time as Sasha's cleft surgery - May 13th is going to be one big day for our little girl! We've been getting a lot of great advice about the surgery fro other parents and it sounds like the first few days of recovery are going to be really hard. She'll probably stay in the hospital for a day or two until she starts drinking (in our craniofacial doctor's words, they could release her, but we'd just be back in the hospital the next day with a dehydrated kid because she's too miserable to drink) and then most families say that their kids are pretty out of it and clingy for up to a week. Depending on what our doctor thinks, she may have to wear arm restraints for up to a month to keep her fingers out of her mouth, which sounds miserable to me but certainly better than messed up stitches. So we're trying to prepare ourselves for a pretty challenging month while hoping for the best from our amazingly resilient little girl. We know this is the right thing to do... but it's going to be hard!

Surgery Scheduled

Today we had our first appointment with Sasha's craniofacial surgeon and it all went marvelously. Well, she wasn't a huge fan of letting him see the roof of her mouth (or lack thereof), but in all other respects the visit was a success. Dr. Siddiqi was very kind and patently answered all of our questions, Primary Children's Medical Center is clearly a first-rate institution, and we have surgery scheduled on May 13th!

We have lots of doctor's appointments coming the the next weeks and months - a speech evaluation, a meeting with an Ear, Nose, and Throat doc at Primary to decide if Sasha also needs ear tubes (this is common with cleft kids because the jaw doesn't fit together quite right), surgery and follow-ups, and then a meeting with Sasha's whole cleft palate team (dentist, speech therapist, surgeon, etc) in the beginning of June. Whew!

Here's your cleft palate tidbit of the day:
We were really confused about the surgery because some websites we read indicated that if there wasn't gum involvement, the doctor just made some incisions in the sides of the palate and stretched the skin across. This made zero sense to us. But Dr. Siddiqi explained that with cleft palates, all of the ingredients for the palate are there (the skin and muscle), they just never formed a palate. So he takes those ingredients and stitches them together in the way they were meant to connect. Of course, it's more complicated than that and he has to make a few "loosening incisions" (yes, that idea makes me cringe, too)... but the basic idea is that he's taking the palate that's hiding on the sides of her mouth and putting it back where it belongs!

Day 31 - All about Sasha

It occurs to us that although you now know lots about the process of getting Sasha and the cuisine of Kazakhstan, we haven't told you very much about our little girl and her personality!

Sasha is a beautiful little girl (well, you know that from her photos!) and has all of the feistiness and spirit that you expect from a Morningstar. At first, with new people or situations she's a little shy. She likes to step back and just observe when something's unfamiliar and doesn't dive in and try to be the center of attention right away. Once she feels comfortable, she's very curious and likes to explore her new surroundings. She also gets talkative once she warms up, with a lot of babbling and even few words we can decipher.

She loves cuddles and likes being held a lot. And she loves tickles! She knows what she wants - that girl is stubborn when things don't go the way she thinks they're supposed to! And those are the traits that have made her resilient, enduring more change and difficulty in less than two years than most of us have seen in two decades.

Sasha had some trouble eating early in her life and as a result was really tiny up until the recent past - we couldn't believe it when the doctor gave us her medical records and she only weighed 14 pounds in October (14 months old)! It's hard to know why she was so tiny - some of it may have been because of less-than-perfect nutrition at the baby house, maybe the pneumonia before arriving at the baby house that had her hospitalized as a baby, but it also probably had something to do with the more liquid baby food served in the younger groups because now that she is in a group with adult food, she's growing like a weed!

Sasha has a cleft palate. That means that the top of her mouth didn't fully form in the womb. Sasha's cleft is through the soft and hard parts of the palate - if you feel the roof of your mouth, you can feel that in the front it's hard and in the back it's soft. Her cleft is through both of those parts, but doesn't extend into her gums, which is awesome because it should mean fewer surgeries to correct the cleft and doesn't seem to affect her teeth. It also doesn't affect her lip, so we shouldn't have to worry about plastic surgery either. Basically, if you look at the top of her mouth (like when she's laughing and throws her had back), you see her teeth and gums and then up into her sinuses. Ok, that makes it sound gross... it just looks like the top of her mouth is missing. But if you look at her from the outside, she's a totally healthy, beautiful little girl!

Cleft palate is a pretty common birth defect, affecting around one in 600 births. There is a genetic component that makes a cleft more likely, and it can also be caused by prenatal exposure to drugs or alcohol or by maternal illness and the wrong time of the pregnancy. We'll never know what caused Sasha's cleft, but the good news is that clefts are very easily correctable through surgery. We've already been in contact with our pediatrician in Utah, and we'll go in for an appointment the first week we're back and then she'll start talking with the cranial-facial doctors up at Primary Children's Hospital in Salt Lake.

Short-term, we're really just looking at feeding and speech difficulties. The cleft means that Sasha has some trouble moving food around her mouth, so sometimes she needs to tilt or shake her head to get the food in the right place and sometimes the food comes out of her nose (which is still a ton less gross than baby spit up). She also needs a little extra time to eat, which is a hard thing to do in the baby house but easy when you have a family of your own! It also means that there are some sounds her mouth simply can't make, so we've focused on the sign language even more than we had anticipated so that her mouth isn't a barrier to her communication.

As we prepared for adoption, Steve and I grew more and more open to a special needs adoption. We knew that there are a lot of kids out there with conditions that, if they had been born in the States, would be no big deal, but because of those kids' circumstances may never get corrected. Over time (maybe that's why we had to wait so long for Sasha!) our hearts grew more and more ready for a kid who might have a few more hurdles to cross than your average bear.

This journey is full of surprises! A year ago we imagined that since we were open to any ethnicity and a girl up to 48 months, we would come home with a little Kazakh preschooler. And now here we are, halfway across the world, with a toddler who looks like she could have been born to us! Adoption has been an extraordinary adventure, and it's hard to believe that it's really all just beginning, that our life as a family of five is just at its start. A year from now, paperwork and court dates will be a distant memory and we'll be consumed with the day to day business (joys and trials!) of being a family. Wow. Sasha, we are so blessed to call you our daughter.

Prayer request: Please join us in prayer for our little girl. Pray that she will grow up with an intrinsic knowledge of the beauty and strength of her identity as a daughter of God and will come to accept his incredible gift of grace at an early age and every day after.