Wednesday, October 23, 2013

Update on Faith's hearing

We had Faith's appointment with the ENT last Tuesday.  If you remember, we've been concerned about her hearing for a few months so we had it tested at our pediatrician in August.  When she "failed" the test they referred us to the local children's hospital where they did some more testing.  Then the audiologist at the hospital referred us to the ENT at the same hospital.  We had to wait two months for that appointment so I went into the appointment ready for some answers and a plan!

The doctor took a look in Faith's ears and declared that "no one has ever been able to see deep enough into those tiny ears" to diagnose anything.  Small "pipes" are common in children with Down syndrome and there are several babies in Faith's baby class who have already had tubes put in their ears.  He tried to clean the wax out of her ears, but gave up relatively quickly because he didn't think he'd be able to see what he needed to see anyway and didn't want to torture her any more.

(Side story: The doctor and the nurse had to hold her down while he cleaned her ears out.  As soon as they released her into my arms to comfort her, she whipped around and stared them down while yelling at them.  I kind of giggled at that.  She likes to show you how she feels.)

He gave us the choice to come back in a few months to check again, but I quickly said that I was ready to move forward.  My gut tells me she needs tubes and I don't want to unnecessarily delay what she needs.  He agreed.  So the plan is to put her under anesthesia and clean her ears out.  Then they'll check for fluid behind her ear drum (I think he said they'd put a small slice in her ear drum to check for fluid! Ouch!) and if there is fluid present then they'll put the tubes in her ears.  I will be shocked shocked if there isn't fluid back there.  Shocked.

Once they diagnose and hopefully fix the problem, they'll do an ABR (Auditory Brainstem Response) test - it's the same hearing test they do for newborn screenings - to see if her hearing has improved.

She also needs an MRI to check the enlarged ventricles in her brain.  This is something that's been present since her birth - nothing to do with DS, just a luck of the draw kind of thing - that we've been monitoring with ultrasounds every few months.  So far, they haven't caused problems (enlarged ventricles can lead to fluid build-up - hydrocephalus - which can cause lots of other problems) and the doctor told me that if there hasn't been a problem by 6 months of age, there usually isn't going to be a problem.  The MRI is something they want to do at around one year of age to get a better look and confirm that everything is all good.

Because she'll have to put under anesthesia for the MRI, we are trying to coordinate the ear surgery with the MRI so she only has to be put under once.  The doctors agree that it's best to minimize the amount of anesthesia a child is exposed to so they think it's a good idea to combine the two procedures. The only problem is we now have to coordinate with two different departments of the hospital and find a date that works for both departments which means....we have to wait.

The wait may actually be a good thing because we recently found out that we should qualify for Medicaid now that we have updated Faith's Social Security file with our data.  I sent in the initial application Monday so I'm hoping we can get that going without a hitch - barring another government shutdown.  Ha.  Too soon?

We don't have a date scheduled yet, but I will want to enlist your prayers for Faith and her mommy who is sure to be a bit stressed.  It's certainly no brain surgery, but anesthesia is no small thing.  And I fully expect good news from the MRI, but there's also a reason they do them - just in case there's a problem that has gone undetected.  I know both procedures are necessary and I'm grateful we can do them both in one go.

Here are the prayer requests as of now:
- peaceful hearts for the Husband and me
- strength and health for Faith's little body
- good news on the MRI
- perfect timing coordinating the schedules of the OR (for the surgery) and radiology (for the MRI). We want it on the calendar as soon as possible (hopefully before the end of the year for insurance purposes), but after our Medicaid application gets approved so there are no complications with that
- speed and simplicity for the Medicaid application to get approved quickly and without a hitch - that will make a huge difference for the medical bills that will start showing up in our mailbox!
- a successful surgery that results in improved hearing for Faith-baby

Thanks for remembering us in your prayers!  I'll be sure to write more when we have a plan in place.

Until then:
BAM! Cuteness!



Tuesday, October 22, 2013

Louisburg Cider Mill

Did I say I was going to tell you about our weekend on Monday?  I meant Tuesday.  Tuesday.  You sillies.

We took advantage of the good weather this weekend and visited the Louisburg Cider Mill and pumpkin patch.  Last year we considered forking out the $8 per person for the extra stuff, but decided that it wasn't worth the money for a two-year-old's attention span.  This year we decided to go for it and it was totally worth it.  Lila went bananas.  She loved every inch of that place.

Lila loved the hayride ("We're riding on HAY!").  I asked the guy sitting across from us to snap a picture of us and he took ONE.  I thought surely someone would be blurry or blinking or not smiling, but it turned out really well.

I tried to get a few more pictures, but Faith was more interested in the shoes of the kid who was sitting next to me.  This was the best picture of the bunch. 

Lila and I were more cooperative.


Except when she wasn't.



The hayride stopped halfway around the field at a hill with two slides.  If you can call them slides.  They were the farm version of ghetto.

Before I could say "feet first" Lila had already gone down the slide twice.  No guts, no glory.

Then I sent the Husband down with both girls.
The looks on their faces should tell you a little bit about their personalities.  Lila = overjoyed.  Faith = unimpressed.
I sent my grandma the following video and she said her "heart was in her throat" watching it.  Grandma, if you had been there you would have been gasping the whole time!


After we dragged Lila away from the giant white plastic boards - I mean "slides" - we tackled the corn maze.  Lila took on navigation duties until the Husband decided he was done following our three-year-old in blind circles.
Only after we got home did we find out that the maze was actually pretty impressive.  They carve a different theme into the fields every year to create the maze.  Here's an aerial shot from the website:

After the maze, Lila scaled the hay bales while I took a break to feed Faith.

Faith had a bemused expression on her face most of the day.  Kind of like this:

I think she was a little over-stimulated.  I was glad we decided to spend the money to do the fun stuff.  We already declared that we want to go back next year.  It's officially a Kautzi family tradition.

Strangely, we didn't think to get the cliche kids-sitting-with-pumpkins picture so I'll throw in one from a few years ago just so we can look at how little and cute Lila was.
Little Lila and her buddy Camille.  Look how little!
I hope my kids remember these things.  But even if they don't, these are the things that will stick in our memories.  I'll remember the blue sky, the perfect weather, the bold confidence of my first born and the sheer adorableness of my baby.  I'll remember having dorky conversations about Harry Potter with the Husband while wandering through the corn maze.  I'll remember that feeling of sharing an common experience with a wider community - even if they were complete strangers.  And I'll be thankful.  Because I have been given so many lovely things.  

Wow. This post took a turn for the sappy.  Sorry about that!  Ha.  And it's already quite long, so I'll be back tomorrow with the update on Faith's hearing.  Spoiler alert: it looks like surgery is in our future.  Boo.

Sunday, October 20, 2013

this is how she crawls



I'm not supposed to let her sit up like that (it's not good for her hips), but sometimes I just want to let her do things the easy way since most things in her life are hard work for her.  Don't tell her PT!



That baby loves a good game of peek-a-boo.  Did you ever see this video?  Faith kind of reminded me of that kitty, although not quite as stealthy.  And did you enjoy Lila's singing in the background?  She's practicing her falsetto and perfecting her vibrato.  I don't even notice it anymore.   The Husband said tonight that he can't believe how many times a day he says, "Lila, stop singing and listen to me!"  That girl sings more than she talks - and that's saying something!

We had a fun Saturday.  I'll post pictures on Monday along with an update on Faith's hearing.

Toodle-oo!

Thursday, October 10, 2013

Grumpity-grump

In the interest of full disclosure, this is a post of whiney complaining.  I have had a severe case of the grumpies today and thus have had no patience for the following things:

- babies who put their feet in their mouth while I'm trying to feed them
- children who ask questions to which they already know the answer
- anyone saying my name and/or requiring something of me
- babies who eat paper after I've repeatedly told them "no"
- children who leave said paper on the ground
- slow pokes
- dogs
- babies who take insufficient naps
- children who sing too loudly or enthusiastically
- my messy kitchen
- babies who blow raspberries in my face when they have a mouth full of food
- slow drive-thrus holding my Dr. Pepper hostage
- children who tell me that I'm "not obeying Jesus" because I wouldn't get them french fries in the aforementioned drive-thru
- traffic jams
- wearing a swim suit (it was water therapy day at Faith's school)
- children who are distractible and flighty
- rapscallions
- babies who want to be held
- anyone or anything that keeps me from doing what I want to be doing (sleeping)

This is by no means an exhaustive list.  You wanna know who's not on that list?  The Husband.  He has earned an exemption because he came home from work early in response to a melodramatic SOS text from yours truly.  He's a good man and I don't deserve him.

Now, for the sake of everyone I may interact with tonight, I'm going to go take a nap.



Tuesday, October 8, 2013

A Fairy Tale (not really)

Once upon a time (okay, it was today) I decided to walk to school to get my classroom ready for the next day.  I thought it would be a fun way to disguise an errand so that my little people saw it as "Adventure" rather than "Mom Is Dragging Us Around to Boring Places Again."  The bigger little person balked at the Adventure until I said (with dramatic enthusiasm), "You can ride your bike!"

"Okay!" she yelled and started throwing shoes out of the shoe basket, looking for the ones she wanted.

Fifteen minutes later, the little little person was buckled into the stroller and the bigger little person was getting cold feet about riding her bike on the sidewalk.

"There might be big bumps on there," she reasoned, "Maybe I should bring my scooter instead."

Sure.  Scooter, bike. Whatever it takes to get us out the door and down to school before they lock the doors.

We made it to the sidewalk on the other side of the street and across three sidewalk squares when we encountered some user error in the scooter department.  To be fair, it's kind of a hard scooter to maneuver - thus my suggestion that she ride her bike.  Since we were still so close to our house, I suggested she leave the scooter and just walk or give the bike a try.

"No.  I'll just carry it."

No amount of reasonable arguments could persuade her to reconsider this plan.

And so, we walked to school.  I pushed Faith in the stroller and Lila carried her scooter for six blocks.  Wearing her helmet.  I wish I had taken a picture.

And we all lived happily ever after.

The End.

Friday, October 4, 2013

what shall we do about it?

I've been thinking about how sometimes you can see the shadow of things to come in the present.  I've been looking at Lila, all lanky and stretched and I can just picture the gangly pre-teen who is to come.  I've been studying Faith as she soldiers on to shed her baby-ness - learning to crawl, learning to pull up, learning to use the right muscles at the right times - and I'm starting to see the toddler in her mannerisms.  I'm starting to dream about what her voice will sound like when she says "Mommy" for the first time. (Typing that sentence made me tear up, no joke.)

But in a bigger sense, I've been thinking about the ways that God plants things in a child's heart that, if nurtured, will grow and mature into Big Things.  I have been thinking about how, my whole life, I have loved babies, dreamed about babies, wanted babies of my own and imagined taking care of babies who need a mommy.

I read a book in college called Things Unseen.  It's the author's thoughts on how to live a life with our minds and hearts fixed on Heaven.  There is one scene he describes that is really the only thing that stuck with me from the book (not because it's not a great book in its entirety, just because I have read a lot of books in my lifetime so my brain only has room for bits and pieces!).  The author describes visiting an orphanage in a faraway country.  He writes about entering the orphanage and being attacked by a swarm of children desperate to be held and touched and talked to and acknowledged.  It broke his heart that they were so needy for even just a hand to hold.  However, then he says that they walked into a different room - dark and still and lined with cribs.  Cribs full of children - not babies.  Children who hadn't been touched or held or cuddled or soothed in days, weeks, months, years.  He writes about the deep and ripping pain in his soul as he observed these children with blank stares, lying lifelessly in their cribs - because what amount of life have they really been offered?  Not much.  Definitely not enough.  He tells the reader that he and the group he was with spent hours holding and rocking these children who were never held, giving them the physical touch that human beings NEED to thrive.  He writes about how "not enough" it felt.

I can still picture where I was in my freshman dorm room when I read those words.  It is a memory that is seared into my consciousness the way that important memories must be imprinted.  I remember the unexpected and unbidden emotional response that erupted from my deep-down heart.  I read the words and I wept.  I wept in that way that you weep when your very soul is grieved.  In those moments, your heart is open and vulnerable to the words of our Good Father and in that moment I knew He took advantage of my vulnerability.  I heard a whisper straight into my heart, "This is not okay with Me" and I agreed, "Me, either, Shepherd." And I sensed an invitation in the midst of my grief: What shall we do about it?  

And in that moment, something had begun.  In hindsight, I didn't recognize that moment for what it was - my own kind of Isaiah-who-will-go?-send-me sort of moment.  And really, it wasn't the true beginning.  As I said, I have long had thoughts of babies and children bouncing around in my heart and I think I have known that "babies and children" probably didn't mean just biological children.  But in that moment, I believe God took hold of the map of my life and began to rearrange my path.  And in hindsight, I can see how he planted roadblocks and open doors and mile markers along the way.  To name a few:

- Spending the summer in Mexico and befriending a ten-year-old girl with Down syndrome.  She had been severely abused and neglected and her behavior was a little horrifying at times which made her an outcast in her village.  People said she was possessed.  But she took to me and I loved her and wished I could rescue her from her life of abuse.  Sometimes her face reappears in my consciousness and I pray that she is okay a dozen years later, though I fear she is not.  What shall we do about it?

- Visiting an orphanage in Guatemala.  This is from our adoption story tab: I visited orphanages full of children who would never live anywhere else because they could never be adopted for various reasons.  I have a vivid memory of the room full of children - all under three years old, nearly a hundred of them - lining benches at meal time.  One near me was crying, but with not enough adult hands to attend to so many, she was left alone to self-soothe.  I couldn't resist the chance to comfort her and I lifted her up and sat her on my lap.  I then realized why she was probably crying - her pants were soaked with urine.  And now mine were, too.  I held her close and whispered comfort to her as she clung to me.  I can still smell the mix of urine and dirt that had soaked into my jeans.  My friend and I were silent with shock and grief the whole way home and I stared out the window of the bus, weeping. What shall we do about it?

- Listening to Floyd McClung describe the Baby House in Mozambique where two South Africans began taking in children who had been orphaned or abandoned.  I tried (and failed) to form coherent thoughts to thank him for his words and tell him how much they touched my heart, but I couldn't because I couldn't stop crying to get the words out. What shall we do about it?

- Seeing first hand in Ethiopia what happens when children are abandoned, when parents die of AIDS, when survival must trump education and health, and when we keep our wealth to ourselves.  What shall we do about it?

- Staying awake through the night to pray for a lamb for our friends when the judge overturned their adoption rulings and awarded custody back to their daughter's birth father.  What shall we do about it?

Have you ever felt the weight of something that just sticks with you?  Have you ever been kept up at night thinking about something or someone?  Have you ever had an overwhelming emotional reaction that surprised you with its fervor?  All of the things I listed above were those kind of moments.  All of them marked me and I marked them as something significant that held more weight for me than it seemed they should.

I cry every time I listen to the Sara Groves song When the Saints.  Especially the bridge at the end of the song when she starts lyrically listing some of the modern-day saints who have gone before: Harriet Tubman, Jim Eliot, Mother Theresa, child slavery abolitionists.  And then the recurring line: "When the saints go marching in, I wanna be one of them."

I had a student last year who, when asked what she wants to be when she grows up, said "a missionary."  Now, this response wasn't all that shocking considering the demographic of my students (Christian, homeschooled, conservative, etc) - they often say things like pastor, youth leader, missionary, etc.  But what she said next made something twitch in my heart.  I asked her where she would like to be a missionary.  Without missing a beat: "Haiti."  She said it with such confidence.  She said it as one who has something burning like a fire shut up in her bones. I asked her why.  "When the earthquake happened, I started praying for Haiti and I want to be a missionary there someday."  This girl was six years old when she said this.  The earthquake happened in 2010 so she was FOUR YEARS OLD when she saw the news reports of the earthquake.  She was six years old and she'd already been praying for Haiti for two years.  It wasn't just a fleeting movement of her heart.  This thing has stuck with her.  Are you feeling the weight of this?

I asked her mom (who happens to teach in the classroom next door to mine) about it.  She told me about a missionary from Haiti coming to speak at their church and how her daughter acted like she was meeting a celebrity.  She was all awe-struck and shy in front of this person who was what she dreamed of becoming.  I asked about when her love for Haiti started and my friend said her daughter happened to walk in the room when they were watching a news report of the earthquake.  She asked her parents what was happening on TV and they told her in simple 4-year-old terms.  And that's when she started praying for Haiti.  Four years old.

Guess who is going to be four in a few months?  She tells me almost daily, "Mommy, I'm almost four and then I'm almost five and then I'm almost 6..." and then I make her stop saying such mean things to her mommy!  But in all seriousness, I've been thinking about all this lately.  What might God be ready to plant into Lila's heart at four years old?  What might he already have planted perhaps through Faith's sisterhood or through friends at preschool or through some ten-second news clip?  And how do I recognize it and nurture it without pushing it on her?

It's also got me thinking about my own story.  Surely Faith's adoption is a chapter that was begun many years ago without my understanding.  But I don't feel like her adoption is the end of that storyline.  I think it's a storyline that will have many branches.

I used to marvel at how some families ended up with so many kids, but now I kind of understand.  I have two now and we are waiting for our Ethiopian baby, so that's three.  And I'd love to be pregnant again - that's four.  And sometimes I wonder if we will someday finish what we started with a "traditional" Chinese adoption - as opposed to our very untraditional one!  Five.  And I often think about the older children waiting for homes.  The kids who are old enough to know what they lack and to fear they may never have it.  Parents, family, home.  For many reasons we would want to wait until the older child we adopt would be the youngest of the bunch so we've got awhile for that yet, but that brings our tally up to six.  Sometimes I daydream and muse aloud to the Husband about all of this and I see his eyes widen as he panics quietly.  "It's just a daydream!" I say to him, "I'm not saying we have to do these things!"  He usually nods warily - more than a little familiar with what sometimes comes of my daydreams:

Who me?
Too bad for him that particular musing ended up so well!  It's only encouraged my dreaming!  He can blame Faith and all of her awesomeness for that!

I don't really know where I'm going with all of these thoughts.  I just wanted to write them down.  I wanted to take a moment to examine the bird's eye view of my life because, if I'm honest, the day-to-day is swallowing me whole right now.  I want to remember how far he's brought us (a line from another favorite song), and remember that we're going somewhere.  I want to marvel at how God navigates our lives.  I want to be grateful that He's not okay with the things in our world that are broken and that he invites us into his redemption story.  I want to see our story from all angles and I want to tell it in many different ways.  Our story may seem unique, but it's not.  It's just the kind of story God writes - typically extraordinary.  And he invites us - all of us - to be players in his stories.  He invites us to be saints among the cloud of witnesses that Hebrews talks about - to be counted righteous because of our faith and nothing else.  And when the saints go marching in, I don't know about you, but I want to be one of them!

When I'm weary and overwrought, with so many battles left un-fought,
I think of Paul and Silas in the prison yard - I hear their song of freedom rising to the stars
I see the Shepherd Moses in the Pharoah's court - I hear his call for freedom for the people of the Lord
I see the long, quiet along the Underground Railroad - I see slave the awaken to the value of her soul
I see young missionary and the angry spear - I see his family returning with no trace of fear
I see the long, hard shadows of Calcutta nights - I see the sister standing by the dying man's side
I see the young girl huddled on the brothel floor - I see the man with a passion come in kicking down that door
I see the Man of Sorrow and his long troubled road - I see the world on his shoulders and my easy load
And when the Saints go marching in I wanna be one of them!



P.S. This is the last day to donate to Faith's Fans to raise money for the Down syndrome walk we are doing in a few weeks.  I will announce the winner to our big giveaway tomorrow!  Not many people have donated, so your odds are good!