Maryelle's long overdue update!

It's been since last November since I posted an update about Maryelle! I'll start with the most recent and then work my way back...
KINDERGARTEN!  We've worked hard this past year to prepare Maryelle for this and the independence that is needed.  Praise God she is ready to tackle the job ahead!  She attended a special ed 4K class last year with incredible teachers and therapists who helped her make gains.  She adjusted well to routine but academically things are more than challenging with her language and developmental age being late 2yr-early 3yrs.  She has a great teachers, aids and therapists in place for this year and we look forward to how this will help her grow.  We're really striving for language gains.
We're so fortunate for the support that Maryelle has been given to help her develop and push her potential.  Here's what the past 10 months have included for M: special 4K, lots of time at the UW speech and hearing clinic [Learning Express preschool AM class (+summer session), 1 to 1 therapy, speech phonology group and socio-dramatic playgroup], Physical Therapy, The Little Gym, individual swim lessons, Gio's Garden therapeutic respite, Summer Preschool at Little Red Preschool and 1-1 Extended School Summer services.
And that's not to mention the doctors who are on Team Maryelle!  Medically, M's heart is doing well and shows no need for further surgery- yay!  After a head CT scan in January, we learned about a significant birth defect- she is completely missing the inner ear semicircular canals- this is the body's vestibular or balance system.  The motion of fluid in these canals is what signals the brain for motion, acceleration and all body positioning.  Yikes!  This was significant information in helping us understand M and why her balance is so poor.  She relies on the feeling of pressure through her feet and her vision (in which one eye is considered blind therefore impacting depth perception.)  With such poor nutrition and physical stimulation in China it is no wonder that she had the balance of a toddler when she first came home!  It also explains the pottying delays (she didn't have enough balance to sit on toilet) and fear of water (once there's any buoyancy she loses all sense of balance).  The doctors and therapists constantly shake their heads in amazement at her physical development and what she is able to do!  They call it miraculous, and we agree, but there's lots of work to continue.
Her eyes are holding stable and since having corrective lenses, her good eye has lost it's astigmatism!
Her hearing impairment proves problematic in so many regards.  The audiologist explained to us that even with her hearing aids, her hearing is comparable to us listening on a cell phone with poor reception.  She misses so much.  Parts of words and sentences drop making it even more challenging to gain language.  We were hoping to move to a BAHA (bone anchored hearing aid) which would require surgery to implant a titanium screw into the skull and then amplification would transfer from receiver through the bone.  But her skull won't be thick enough for this option for a couple of years.  So for now, we're moving forward with surgery to correct the shape of her ears so that they're able to hold the hearing aids rather than taping them to her ears which is glitchy and doesn't provide independence for her.  She will be unable to wear hearing aids for 8 weeks post surgery, so we are having the ears done separately so that she's not rendered completely deaf during that time.  Her right ear is scheduled for December 14, then the left in June.
Aside from all of that 'stuff', M is also growing strong in personality!  Not that this has ever been an issue!ha  She's funny, sweet, sassy and stubborn, and wanting to be in control of her world- especially her siblings!  Yes, this is the typical kid stuff!  Snuggling and selfies with her sister and wrestling and Mario Kart with her brothers are her favorites.  M experienced field trips (through Gio's Garden and Preschool) for the first time this summer.  She was so excited about these new experiences and opened my eyes to the simple things that we pass over.
Boy is this girl loved!  The days are often challenging (and tiring), but we're constantly reminded of God's goodness and His love and faithfulness to her -- and us!

November - Nat'l Adoption Month

When I began this blog about our family's adoption journey,  I included the article below as one of my first posts.  Maryelle has now been home 15 months, and with every passing day I realize the depth of meaning to writing new chapters and the lifetime of yeses that move us forward in our smallness but God's bigness.  There are days we still don't feel adequate.  And days that we don't feel deserving of the gift of Maryelle in our lives.  But that is the heart of our God- full of grace, mercy and strength.  And every day with Maryelle makes us an eyewitness to this.

So what's new with Maryelle?
All of the diagnoses seem to be behind us and we're moving forward in supporting her in every way we can.  This fills our days with speech therapy, audal habilitation (learning how to listen/hear), OT, PT and 4K at our elementary school.  She loves going to 4K!  The structure has been so good for her and is providing her better opportunity for gains.  The district's special ed 4K program just got moved this year to our home elementary school, so she and Caleb are in the same school for one year and it will also make her transition to Kdg next year easier by keeping much of the same special needs support.  Yay!  She loves the bus and can barely get in the door before showing me the craft for the day.

Medical updates...

Hearing: the hearing aids have given her increased access to sound.  Far from perfect hearing, but at least she's now hearing speech sounds.  The trick is that since ALL sound is amplified, it's hard for her to distinguish what she should listen for.  In laymans terms, she may be only actually 'hearing' about 60% of the language around her.  She may catch the beginning, but not the end of the word.  Or the end, not beginning of a sentence.  Then she has to process and make sense of all of it.  Not an easy or quick process.  Therefore, language is slow in coming.  Currently, she is around a 2 1/2 yr old level for language.  5 years of not hearing language is a hard deficit to overcome.  But she's making gains and is doing quite well around the house communicating her needs (and trying to boss Caleb around!)  She is now using an FM system (microphone for teacher/speaker) at school and this has made a huge difference in her attending and understanding.  With that success, we decided to purchase one for use outside of school (this will help with therapies and church).  We get that later this week.

Vision:  For 6 months, we used eye drops that penalized her good eye in hopes of engaging her impaired eye.  Again, after 5 years of minimal vision in an eye, the brain pretty much turns it off.  It's difficult to get the eye re-engaged, but thankfully hers has to a fair degree.  We were hoping that she would increase vision in that eye, but unfortunately that won't change because of the type of birth defect.  With the best correction lens we can give her, she still only sees a +500 in that eye.  We carefully protect her good eye because without that sight, she would be rendered blind.  On a side note, she loves her new glasses ;)

Heart:  We'll be having a followup with the cardiologist in January to see how her heart rate is doing and if there's any changes in the leakage of her valve.  Her oxygen levels are great so we're not expecting any change or need for treatment.

Overall physicality:  Boy, is she growing and getting stronger!  She's proud of the ways her body can now move with balance and strength and is constantly saying "look, mom! watch!"  Today in OT she was going up a little climbing wall and when her OT would say "Go Maryelle!", Maryelle would respond with "I can't hear you!" wanting her to cheer more loudly for her!  What a character! The malformation of the inner ear and vision impairment make balance a challenge, but she's certainly made big gains in this area.

With increased language, we're getting to see/hear a little more into her heart and emotions.  For example, whenever a pic of China comes up on our screensaver or China is mentioned, or even if she thinks about it, she quickly and adamantly says, "no, China, no China.  MY mommy.  Maryelle right here."  It breaks my heart to think of what life was for her.  So much trauma, so much lost.  Yet so much to redeem.

She's now experiencing holidays for the first time and it's SO fun!  [last year was too overwhelming and she was developmentally around 12 months so we skipped a lot.]  She now fully understands birthday parties (or any party for that fact) and runs out the front door to greet people and bring them to me for a hug.  So sweet!  And boy was trick or treating a hit!  She's learning about Fall and Thanksgiving and is totally revved up about CHRISTMAS!!  She keeps asking when we get the Christmas tree.  She'll now look at toy catalogs and point to things that she wants.   She says, "Maryelle play.  or  Mine"  I get the point!ha  We LOVE experiencing all of this with her!

One of Maryelle's favorite things is church.  We count the days til it's time to go again.  She started attending AWANA Cubbies this fall on Wednesday night.  And of course there's Sunday mornings.  She gets so excited about it.  And then there's all of her siblings and their events.  She's definitely their biggest fan!  If she's choosing her clothes, then her top picks are her Middleton or Packer shirt.

I could go on. :)  We get the privilege of watching the layers of loss, hurt, and neglect slowly peel away and her God-given personality come to life.  A therapist recently said to me, "when did she get so funny?" ha!  She is indeed.  In the adoption community there's a common hashtag that adoptees use- #wecouldhavemissedthis   It's true.  Obedience to God's calling has been a gift.  Not without daily challenges of course, but no less a gift.  Have you ever thought about saying yes to adoption?  If not bringing a child into your family, then how about coming alongside families who need financial or physical help with their adoption?  If you need some convincing, I'll post a ridiculous amount of cute pictures at the end of this blog. ;)

...We say yes to adoption because we are expectant.  Though we tremble, we expect God to take our yeses, redeem the broken, and weave a great story. 

The truth is, we might possess a few of the characteristics that the world would deem worthy reasons to say yes to adoption.  But, for the most part, we know ourselves to be timid, weak, ill equipped, messy and wavering.  We waffle in our decision-making and fail in our parenting.  We have every reason to say no.   

But here is the glory part.  When we utter even the weakest yes, we find God to be big.  Bigger than we once thought.  Bigger than our lack.  Bigger than our doubt.  Bigger than the needs before us.  Bigger than we can comprehend.  Bigger.  And He proves Himself good, steady, intentional, on time, able, strong, and sovereign. 

So we take our small, mustard seed size faith, combine it with what we know to be true about God, and say yes.   

We say yes because the call is whispered, or downright shouted, into our hearts.
We say yes because we want a child.
We say yes because we have love to give.
We say yes because we prefer front row seats to God’s miracle work.
We say yes because we walk by faith, even when the future makes us quiver.

We’ll never feel adequate for the call.  The circumstances will never be quite right or the timing ideal.  

But with hands open and palms up, we say yes anyway.  And another crib is emptied and a new chapter written.

So we say yes.  Yes to a lifetime of unqualified yeses.  

Yes to moving forward in our smallness and God’s bigness.

For the entire post, see:  http://www.nohandsbutours.com/2015/03/24/yes/

 



 

 
 
 
 

What’s up with this ‘mom thing’?? (overdue update!)

Well we’ve just wrapped up a week of Mother’s Day and my birthday festivities.  I’ve read oodles of posts from other mom friends, and shed my tears and pondered again what this whole ‘mom thing’ is all about.

We just finished a series at our church called The Art of Ordinary.  Yep, that’s it.  THAT’s the ‘mom thing’.  Ordinary love.  Ordinary self-sacrifice.  Ordinary hugs.  Ordinary band aids.  Ordinary volleyball practices.  Ordinary therapies.  Ordinary dinners together.  Ordinary family bible time and prayer.  You know that I could go on. And on...

All of this ordinary =equals= treasured and memorable family years.  Has any one thing been all that memorable?  No, not really.  But I already hear my older kids looking back at their childhood with fondness.  And on Mother’s Day when they say they appreciate me, I can see the truth in their eyes and hear it in their voice.  It’s been in the ordinary struggles and joys that we've grown- TOGETHER.

So this post is going to be all about the ordinary things that have been happening in the past few months of our lives.

You're probably most interested in hearing about the ordinary orphan who became our extraordinary cherished gem 9 months ago.  We just keep shaking our heads in amazement at her progress.  And particularly at the amazing little person that is coming alive right in front of our eyes.  She is showing us little bits of new progress each day.  Is the process slow? yes.  Are we filled with hope?  Heck yeah!

At the end of February, Maryelle got her hearing aids, started early intervention preschool, and speech therapy.  In 3 months she has gained SO much!  She is constantly trying to communicate, and has enough words that she can get her point across.  She easily interacts with other kids and adults now.  And yesterday, she skipped for me for the first time.  She exceeded the goals that speech therapy set for her this semester and is now doing the somersaults that she learned at The Little Gym at home.  I just keep doing the ordinary 'mom thing' and by God's grace she comes ALIVE.           How blessed are we to be the witness of this!?!

Caleb, the baby boy of the family, (this title helps him feel like he wasn't displaced by M!) is busy with reading the entire Harry Potter series, playing piano, soccer and training for his first kids' triathlon.  Oh and I should mention that he has become quite skilled at pushing his little sister's buttons!

Ike adds humor to our ordinary days.  He's just so witty.  Although I must admit that oftentimes at the dinner table that it's just he and I laughing, so I'm not sure what that means. 

He and Andy celebrated his 13th birthday with a short cruise out of L.A.  We forego the fancy birthday parties when the kids are younger and mark this milestone in a big way.  It was a time for lots of dad/son talks about teenage responsibilities mentally, physically and spiritually.  Ike is hitting teenagedom without hesitation and we can't wait to walk beside him through it.

Hannah loved her winter season on the court and we've seen her grow and mature in so many wonderful ways this school year.  A month ago she had knee surgery to remove a big bone growth from her tibia and to repair her meniscus.  Although it's been challenging, she's handling it remarkably.  She's overly anxious to get back to full strength for summer basketball, volleyball and her Dominican Republic mission trip.

Here's to making GREAT out of the ordinary!!

What a week! School--Gene Codes--Cardiology--Opthalmology

:School:
Where do I begin with the updates??  How about with the fun stuff!  Maryelle started SCHOOL this week!Her IEP with the Middleton School District is in place and she is attending the early childhood intervention (special ed) program on  Monday, Wednesday and Friday afternoon for two hours.
She was soooo thrilled to ride the bus like her siblings do!  She's excited to go and excited when she gets home.  Here's to hoping she keeps that attitude!ha

:Gene Codes:

On Tuesday, we met with our geneticist for a follow up consult about the results of M's genetic testing.  Long story short- no big new news. Which at this point, we just keep hoping for no new news!  Maryelle's gene coding error is typical of CHARGE syndrome.  There were lots of specific numbers and gene sequencing/coding information, but it all comes down to the fact that there was a coding error in the gene that was necessary for proper inutero development.  Hence, birth defects.   We've already done all of the testing for the potential defects; other than cognition. The Dr talked more about that. Her progression is very slow and she exhibits behaviors that are likely due to cognitive delay rather than developmental. We meet with Waisman developmental specialist on March 30th. That will begin the process of assessing and watching her cognitive progress.  But really, only time will tell and we continue to pray for healing.

One added thing we found out is that Charge kids can have endocrine system problems (hormones).  She seems to be growing appropriately so they're not concerned now, but we'll need to monitor her down the road for hormones not being adequate for puberty.

So I was thankful for no big new news and pretty much trying to just not think too much about the cognitive piece. We're doing all all we can right now and we'll keep focusing on that!

:Cardiology: 

Wednesday morning, Maryelle had an echocardiogram and EKG then saw the cardiologist. She had two different holes in her heart (birth defects) that were repaired well in China. They found a small amount of leakage of the mitral valve (which separates the left atrium from left ventricle). Not of big concern now, but will be something that is monitored for change.

M also has a lower heart rate which is a bit concerning. This could be connected with her thyroid/hormone levels or an issue with her heart's electrical system. We will have a blood draw to check hormones (which also will answer the geneticists endocrine concern). The Dr also recommended that M wear a 24hr heart monitor to give us insight into how her electrical system is controlling her heart rate in various scenarios.  We'll probably tackle the blood draw and heart monitor in a few weeks once she's had a little more time adjusting to her hearing aids and school.

:Ophthalmology: 

The Dr said that with glasses she has gained a little bit of function in the eye with the defect.  She can't get better eyesight in that eye, but right now the brain is mainly relying on the good eye and he thinks that we can engage the bad eye to get more function or use out of it.  So we'll be putting drops in the good eye each day that will penalize the function of that eye so she's forced to put the bad eye into use. We'll also try patching a little in the evenings and see how that goes.  As you can imagine, the first attempts with drops has not gone well, but we're happy with the news that the eye isn't getting worse!

 

Time to hear!

Tuesday was a big day for Maryelle- she got fitted with double hearing aids!  It's hard to fathom that she has gone her entire 5 years of life with moderately severe hearing loss.  The birth defect of malformed inner ears has been like the bottom part of an iceberg - it doesn't obviously present itself, but it's huge and can have devastating effects.  So now M is finally getting the help she needs to enter the hearing world.  She has the opportunity for language! 
The fitting process for the hearing aids was challenging.  After an 1 hour 45 minute appointment to get them fitted, there still wasn't a good solution.  Her malformed ears leave no place for the hearing aid to securely rest.  So we are trying to adhere them to her ears with toupee tape or trying to pin them under the bows of her glasses.  We're not sure if this is going to be the best long term solution.  We have 90 days to change to a different option which would be Bone Anchored Hearing Aids [BAHA].  This would be a titanium screw that would go into her skull behind her ears and then the hearing aids would be mounted to that.
We'd appreciate your prayers for Maryelle as she adjusts to this.  Because of stimulation deprivation in the institution, she's very sensitive to tactile sensory input.  So a flopping hearing aid means that she's grabbing at it and saying "off!!".  I can't say that I blame her.  And all things considered, she's been AMAZING in how she's handling it so far.  Not only does she have to deal with the sensory stuff, but her brain is now hearing LOTS of sound that it's never heard before.  It all has to be processed, sorted and inventoried for use.  Pretty overwhelming for the brain.  But it's been fun to start hearing her make repetitive sounds as though they're incredibly interesting in the new way that she's hearing them.
Earlier this month, Maryelle began one on one Audal Habilitation therapy at the UW Speech and Hearing Clinic twice a week.  Next week she begins her early childhood special ed intervention class, which will be three afternoons a week.  Language bombardment is a necessity in hopes that she can gain language.  Add in her Sunday School class and a Little Gym class and she's getting lots of opportunity to grow!  We're thankful!

The bear has hearing aids too!

First movie                                                                                             Bucky is her fav thing to wear!

First cookie baking with Mamaw.

First Valentine's

My shopping helper