Wednesday, July 26, 2017

sparkly hearing aids

The pink sparkly hearing aids are in!

Madeleine is drawn to jewelry, so the good news is, I think she thinks they're jewelry, so she hasn't been messing with them. Win.

But the reality...

Madeleine has a profound hearing loss.  Normal hearing is measured from 0-25 decibels. M cannot hear sounds above 80 decibels, putting her at a profound loss. Not to pop anyone's bubble, but these hearing aids don't help her much (on the surface).

Why go to the trouble of getting hearing aids?

1 - It's required by insurance. We have to prove to insurance that even though her sedated hearing exam shows she has a profound hearing loss, that hearing aids won't help.

2 - Even though the hearing aids may not help her distinguish sounds, the hearing aids may help stimulate her nerves and essentially help her body get used to the idea of sounds, if that makes sense.

3 - If she medically qualifies for cochlear implants, this is good practice for putting something on or in her head and learning not to mess with it!

So what are our next steps?

1 - M's hearing aid trial is fast tracked due to her age and circumstances.  While we know she's a smart little girl, she needs a full language - whether that's verbal or through sign language - to really thrive.  So we will go back to the audiologist in one month to see how she's doing with the hearing aids.  We'll most likely report back that we haven't noticed any changes.  Or maybe we will.  Who knows.  And then we go back two more times to see to check that little box for insurance.

2 - In theory we know that she qualifies for cochlear implants, however we don't yet know if she medically qualifies.  We don't know too much about her history before she became ours, and we don't know what the inside of her ear looks like and how it functions.  Typically at some point during this hearing aid trial, we would get an MRI scheduled, however I'm going to push to do that sooner rather than later.  The only reason to get the hearing aids is to get the cochlear implants.  If she doesn't qualify for the cochlear implants, then there's no need to mess with hearing aids for the next few months -- and we can move on with her education in a different direction.

3 - We have to switch up her language therapy.  It's unfortunately been a good lesson in government.  (I'll spare you the reasons why I believe in limited government.....#libertarian.)

4 - We continue to learn sign language.  Madeleine has mastered the following:
  • No
  • All done
  • More
  • Food
  • Drink
  • Cheese
  • Cookie
  • Bed
  • Good job
  • Please
  • Thank You
  • Bird
  • Penguin
We've taught her so many more, but she doesn't use them consistently enough to really say she's "mastered" the words.

Plus it's kind of difficult teaching your child sign language when you don't know it that well yourself.  Here's how this goes:  While we're playing, I try to pull out her Little People animals to teach her what they are.  I pull up my app to play the video.  If the app doesn't have it, then I have to google it.  Then I play the video about three times to master it myself.  Maybe another three times, if it's complicated or if it's a word you have to spell out.  And then turns out she's a toddler with a super short attention span, and she's already moved on to playing with blocks.


So. Many. Words.

Apologies for the long update.  Hope you all made it through, and hope this explained some of what's going on. Thanks for the continued encouragement and prayers!

Saturday, July 1, 2017

hearing loss update

Many of you have had questions about Madeleine's hearing loss diagnosis, so here's an update:

As many of you know, we've suspected all along that Madeleine had some sort of a hearing loss.  We didn't think it was profound.  Obviously there were signs she didn't have hearing, but there were signs that indicated she did:  how well she follows directions for a 2 year old, the sounds her speech therapist tracked, that she picked up a play phone once and said hello.

We've basically been playing insurance and doctor games for the past six months.  Her international adoption doctor said to give her 2-3 months to talk and if she didn't, then to start testing, which brought us up to February.  Her first tests were inconclusive.  We then got a sedated ABR test scheduled a few weeks later, only to find out her pediatrician/audiologist didn't follow insurance protocol and if we wanted our insurance to pick up the cost of the sedated test (anesthesiologist + nurse + audiologist + bed for an hour or so), we'd have to go to a pediatric ENT first.  We were less than impressed with the pediatric ENT, who spent about 2 seconds with us before having the same hearing tests re-performed, which were also inconclusive.  So finally, four months later, we got everyone's blessing to get the sedated ABR test done.  The sedated ABR test was performed early June, of which we found out she had no response to any sound, meaning M is completely deaf.

We're left with 2 options:  cochlear implants and/or don't explore anything else medically and teach her ASL.

We've decided to explore cochlear implants, but of course, there's an insurance protocol we have to follow before getting to that point.  First, even though her sedated ABR shows she has no hearing, insurance still requires we do a hearing aid trial for 3 months to prove again that she can't hear.

Here's the kicker: Insurance wants us to prove to them that she can't hear through using hearing aids, which aren't going to do much of anything for Madeleine, but of course, insurance doesn't even cover hearing aids!

This week, we took M in to get hearing aid molds (the piece that sits in her ear) made.  Kids' hearing aids are typically in two pieces.  We ended up paying for the molds out of pocket and thankfully, we're able to borrow from the Lions Club Bank for the processor piece (what is typically $6,000+ out of pocket).  Those take one month to make, so we'll go back in a month, get her fitted, and then bring her back in a month and repeat, I guess, until we've proven to insurance again that she can't hear.

(Side note:  For those of you who are familiar with this world more than we are, we're aware that First Steps and maybe even some other organizations could have helped us with the cost of the ear molds, but as we're trying to fast track Madeleine, we wanted to go ahead and get those done ASAP and keep the ball rolling versus waiting even longer.  If we have to go that route in the future, we'll definitely go back to those other groups for the financial help.)

THEN once that's finally been determined, we can start exploring cochlear implants (which thankfully our insurance DOES cover).  In theory, Madeleine qualifies.  In reality, we don't know what her inner ear actually looks like.  The best news we can pray for is that she was born deaf.  If that's the case, then we're probably going to be good to go.  If she wasn't born deaf, but had untreated ear infections or other problems in country and subsequently lost her hearing that way, she may not medically be a candidate for cochlear implants.

And on top of that, we're back at teaching her sign language (rather, learning it ourselves), so that's been helpful too.

That's all we know for now!

Friday, April 14, 2017

long overdue M update

I have a day off with no obligations, so here's a long overdue Madeleine update for you all.

This is one of my favorite pictures of her, mostly because it's cute, but partially because I love that t-shirt (soba noodles).

Little by little, becoming a ham in front of the camera


LOVES Mama's coffee.

Still not BFFs, but they tolerate one another pretty well.

Visiting mama at work.

She has been mimicking us for several months now, but she's started to independently pretend so much more lately.  She mostly plays only with this doll (it used to be mine) and will grab a wipe to wipe her off, lift up her legs like we do hers, try to grab a diaper or twenty, and then repeats.  

CJ has been taking her hiking on the trail that runs through our neighborhood and at Eagle Creek.  Mickey often rides on his shoulders.

And M caught on that she goes in Daddy's backpack for a hike, so naturally, her doll needed to go in her backpack for a quick shopping trip downstairs.

M loves, loves, loves being outside and exploring, especially on the farm. My dad would have eaten this up.

Wouldn't eat the actual cookie, but loved the dough.

Totally not on board with this bike helmet thing.

And...we're back here.  Last month, she got sick and then right after she got better, she started teething.  It was necessary and we don't regret it, but we ended up co-sleeping with her again during those times.  And she's a smart girl and figured out that if she wakes up at any of her favorite times now, even once she's better, one of us will come get her and co-sleep the rest of the night.  While I want to meet her needs, CJ is gone two nights a week and I work.  So we're trying out a combination of methods to get her to sleep through the night again on her own and then to learn how to put herself to sleep (without crying it out).  This is our next step -- an uncomfortable futon mattress which CJ calls a "Japanese mat."  It's even worse than that dumb air mattress, guys.  But we've seen some progress in her sleeping the past several nights, so hopefully we're on the right track again.  We're all MUCH happier in the mornings, Madeleine especially, when we each sleep in our own beds!  (Imagine that.)

Petting Bridget

Madeleine works with a developmental therapist once a week, and this was today's craft.  The DT told me today that when she first started seeing Madeleine a few months ago (very late January or early February), she placed Madeleine developmentally at 9-11 months (at 24 mo. old).  As of today, she said she'd place her developmentally at 15-18 months.  That's huge progress in just two months!

We have M working with a speech therapist once a week too.  Speech is obviously coming really, really slowly.  M has said two words once a piece:  Hello (on January 19th) and Hi (just last week).  The speech therapist tracks her vowels and consonants, and she's making new ones, but it's just slow progress.  Again, she's trying to catch up of 19 months living without parents with 600 other children.  And in the meantime, Madeleine is able to use several signs: more, food, drink, please, thank you, Daddy, Mama, all done, and I love you.  Her therapists assure us that using sign language doesn't delay her speech at all.

To rule out any hearing loss, we do have an ENT appointment scheduled next week (it's only taken us 3 months to get on someone's schedule!).  She follows directions incredibly well (the speech therapist tracks this and Madeleine follows 80%-100% of the time), so we are thinking she can hear, but we need to be certain.

We're also playing catch-up on her shots.  Of all the shots reportedly given to her in country, she only had the measles antibody in her system.  So we are trying to get her caught back up as quickly as possible, giving her 4-8 shots every month or so...

She also had her first dentist appointment last month and came through with flying colors.  Thankfully, M loves brushing her teeth.

That's it for Miss M!  Happy Easter, everyone!

Saturday, February 18, 2017

so many parties...

I've joked that if Madeleine could talk, at some point in the next few weeks, she'll look at us and ask when her next party will be.

We started off January with our last shower which my aunts and cousins graciously threw for us.  We STILL haven't opened up all those gifts yet!

There was originally only going to be one birthday party, but when we found out my dad only had a short time left to live, we decided to celebrate a few weeks early so grandpa could enjoy too.

After we got Madeleine's referral last summer, my dad bought her this Massey Ferguson t-shirt.

It takes a loooonnngggg time to open up gifts a tiny piece at a time...

I made Madeleine cupcakes. She wasn't impressed and ate 2 bites (and the kid eats everything else in sight).

Then there was Chinese New Year.  I had every intention of having many more decorations and cooking a traditional meal from scratch, however life's circumstances got in the way. Thank goodness for Amazon, Etsy, and our local, completely inauthentic Chinese restaurant for saving this year's CNY.

Aren't these adorable?!  I had the artist draw a ram on the side, since Madeleine was born in the Year of the Ram.

First pair of chopsticks!

The traditional CNY gift is a red envelope with money.  Since Madeleine doesn't know what CNY or money is, she got Little People animals and doctors instead.  I think she was pleased.

And then we celebrated her birthday on the actual day itself...

This is the moment she figured out what presents are and what to do with them.

Just that very week, she started to LOVE her Little People and actually play with them (versus just carry them around), so she was actually pretty excited about the Little People house.

Aaaannnndddd then there was the real, rescheduled birthday party.

I had the same Etsy artist make a custom peg doll of Madeleine, using pictures of some of the traditional Chinese silks we brought home for her.  It's hard to see on the picture, but she was able to paint on tiny little dragons too.

We had her on board with the presents, but she was still unsure of the cake, the candles, and the singing...

AND FINALLY, Valentine's Day!

A unicorn cake, guys!  (Confectioneress in Zionsville!)

Madeleine has started working with First Steps, so one of her therapists helped her create a Valentine for me.

It wouldn't be a party without a gift, right? M is the proud new owner of a Little People tractor and trailer.

Too much? Maybe. Do I care? Not really.  We're making up for lost time.  And I also can't help that her birthday falls between so many major holidays.  :)

Sunday, January 29, 2017

God is faithful.

Last February or March, my dad was diagnosed with esophageal cancer.  Throughout this past year, we consistently asked God for a few things.  And He has been so, so faithful to us.

One of my favorite smells in the world is freshly harvested corn.  It's the smell I associate with home and it reminds me so much of the combine rides I would get every fall with my dad.  I simply couldn't bear the thought of the 2015 harvest season having been my last combine ride with my dad.  I prayed, prayed, and prayed some more that I would get another trip around the field -- and that my daughter would too.

My dad missed a good part of the spring planting season, but fall came around.  The minute I heard he was in the field, I left work to take a ride. I think I cried the entire drive to the field, I cried a good part of that ride with him, and I cried a good part of the drive back to work, all out of thankfulness.

Another prayer was that my dad would get to meet our daughter.  Back when he was diagnosed, we were so far away from being matched that it didn't seem possible.  And then we got matched in June, but we didn't get to travel until October...those were precious days we felt were wasted.  But here's Madeleine meeting her grandpa for the first time.

And then God blessed us some more by letting Madeleine take a ride with me in the combine.  Dad was so, so happy. If anyone else had touched all the buttons she did, they would have been yelled at.

There were a few other consistent prayer requests during our adoption journey - maybe more on those another day - but the final one was for complete healing here on earth for my dad.  Unfortunately that answer was no.

We buried my dad this past week.

I write this not to solicit pity, but to help myself grieve and to share with you this testimony. Even though I didn't get my biggest prayer answered the way I wanted it, God was still faithful.  He built up our trust during this incredibly difficult year and we know that He will continue to be faithful and that we can continue to call upon Him for the big and small things in life.

And even though my dad is no longer here, we're left with this beautiful gift -- a happy little girl who brings us all so much joy and makes the pain of losing my dad just a bit easier.

Saturday, December 31, 2016

December in review

As with everyone else, December got away from me.  I'm sure most of you have seen these pictures on social media, but here's the back story of what we've been up to this past month.

Backing it up a little bit, about a week and a half after we returned from China, we had our first visit with our caseworker.  (We have to report back to China on a quarterly basis that first year, then on years 2, 3, and 5.)  Our caseworker commented that Madeleine still had what she calls an "orphanage glaze" and that she notices kids seem to snap out of it around months 3-6.  CJ and I, being the naive, first-time parents we are, took it with a grain of salt, almost brushing it off.  We honestly thought the quiet, calm, deliberative child we brought home was who Madeleine really was.

We were wrong, and we couldn't be happier about it.

Somewhere during month two at home, a different little girl came out.  She's still curious and persistent.  But she's also become more like a toddler and as CJ says, she has found her little girl scream.  You all know the one we're talking about, the one that happens in grocery store aisle #20 that you can hear while you're still in the produce section.

As you'll see from a lot of this month's pictures, eye contact has been one of Madeleine's biggest improvements.  Yes, some of that is her being a toddler.  But a majority of it is still that eye contact is a learned behavior, and for the first time in her life, Madeleine has parents/caretakers who will look her in the eye, pay attention to her, love her.

A much more fun personality is coming out.

Mid-December, we took Madeleine to see an international adoption doctor (yes, that's a specialty).  Her doctor had reviewed M's file prior to us accepting her referral, so she knew of her "special needs."  I put that in quotation marks because we aren't certain her file is anywhere close to being accurate.  In fact, at this time, there is nothing medical in her file that requires additional testing or attention.

While there, we learned that in a six week period, Madeleine grew 1.5" and put on 1.4 lbs. Prior to this, she was only in the 25th percentile on the Asian growth charts and didn't even register on the American growth charts, so this is welcomed news!

Even though her medical file may not be accurate, we still did quite a bit of blood work to fill in the blanks and make sure there aren't any underlying issues her file didn't address.  And although we were provided her vaccine record, we still pulled her titers to determine what vaccines she has in her system and which may need updated, if any.

Additionally, and the most fun, we submitted stool samples for testing!  There's nothing like having some vials of poop sitting on your counter, even if they are double bagged.  The point of that is to rule out any parasites that many children in orphanages have.

(Due to the holidays, we haven't received results back from any of these tests.)

It's like once she started walking, a light bulb clicked and a whole new world was opened up.  She's much, much more curious and likes to test her limits quite a bit more than she did a few months ago.  She's finally becoming the toddler that she should have been quite some time ago!

While we are so thankful Madeleine is home and was able to celebrate Christmas, we're actually more excited for next Christmas, when she will hopefully have a much better understanding of what's going on (and so I can do Elf on the Shelf).  She still humored us this year and opened up some presents from Santa -- rather, she unwrapped her gifts just enough to see what was inside and then stopped.

A few days ago, a few therapists from First Steps visited for a formal evaluation of Madeleine.  We verified what we already knew - that due to her circumstances, she is globally delayed.  This means she functions more like a 9-12 month old (give or take), not at the 2-year old level.  We have the access and means to provide her with this early intervention, so there's no reason not to do it.  Although we're biased, we do believe she's a smart little girl and will catch up very quickly.

With the help of the therapists, we narrowed her (future) therapies down to speech therapy and to developmental therapy.  I didn't even know developmental therapy existed; I thought it was just broken down into specialties (PT, OT, speech, etc.). The developmental therapist will look at Madeleine globally - cognitively, through language and communication, behaviorally, gross and fine motor skills, and self-help.  Essentially general therapy like this will help her connect the dots.

A big part of First Steps is also giving us the tools and education to help her learn.  The physical therapist who evaluated her said she needed to work on more upper-body strength and commented how she ideally needed to crawl more. Since she's mimicking us now, we can play with her on the floor and try to get her to crawl around with us.  She suggested buying one of those play tunnels to encourage her to we now own one of those ugly things.  Another suggestion was activities that encourage her to use her hands more -- painting, play doh, etc.  I assumed she was too young for that, given her developmental age, but they assured me she wasn't.  You'll see above that attempt #1 with play doh was not a raging success, but we'll keep on trying!

 My final adoption act for 2016 was changing Madeleine's name with the Social Security Administration.  Talk about more unnecessary red tape.  When I completed her DS-260 for US Citizenship and Immigration -- the form to allow her to immigrate into the United States -- I was asked if I wanted Social Security to automatically send her card when she arrived.  I said no, knowing that most likely they'd sent it to me in her Chinese name and I'd have to redo it and that it'd be easier to start fresh.  Of course, that was ignored and we received her Social Security card in the mail shortly after arriving home -- in her Chinese name.  I basically told insurance, the doctor's office, anyone who needed it that we didn't have her number yet.  Imagine all the problems it'd cause, all the work I'd have to redo, if her names didn't match up everywhere (taxes, anyone?).  #hotmess

We finally received her Certificate of Citizenship a few weeks ago, which allowed me to change her name with the Social Security Administration.  I came armed with her Social Security card in her Chinese name, the Certificate of Citizenship in her American name, her Hague Adoption certificate in her American name, her Chinese adoption decree in her Chinese AND American names, my passport....and they initially told me it wasn't enough.  I also learned that even though US Citizenship and Immigration saw her as a US citizen, the Social Security Administration did not -- they still classified her as a legal alien.  After multiple people working on her file, her name change went through and her new card will arrive in two weeks.

Now do you all see why I said that all the trouble we had with her adoption wasn't caused by China, but by the U.S. government? 

Madeleine has been cool to stuffed animals and dolls since she got home.  We assume she never had them in the orphanage.  Since she's mimicking us now, if I pretend with the doll, she will now take her and pretend.  We got out her doctor's set to play with and now she will check her doll's heartbeat and give her shots. 

In many ways, 2016 has been a wonderful year, and in others, it has been kind of terrible.  Like most of you, we're ready to close the door on this year already and hope for a much better 2017.  In fact, I need to close down now so I can get back to planning several events for January -- Madeleine's birthday and Chinese New Year are right around the corner!