March 2014

This month has been busy with appointments and therapies for Lilly.  Liam has been learning a lot in preschool.  The kids have enjoyed playing together.  We've all anxiously awaited warmer weather.  Here's March in review through pictures...

We took our first trip to Chuck-E-Cheese with Grandma & Grandpa Kusch.

We ordered Liam a shirt for his Buzz Lightyear birthday party.  He wanted to try it on and immediately said, "To infinity and beyond!"

Liam has become an expert at making air popped popcorn.

We celebrated Dave's 33 birthday.

The kids play so well together.  We love to see their creativity.

Liam has a really hard time turning off his brain at bedtime.  The only time to see him still and quiet is when he's asleep.

The kids love taking pictures with our phones.  They have mastered the selfie.

Liam is great at making his name!  He can also write mom, dad, and Lilly.

little mommy

We made more homemade play dough.

A Lot to Think About

Today, we had Lilly's case conference with First Steps.  The point of this meeting was to confirm that we want services to continue for Lilly (provided she qualifies), and learn what our options are when she turns three.  First Steps comes to our home for Lilly's therapies until she turns three.  At that point she needs to attend therapy at a school in our district.  We happen to live in East Allen County, which is not known for academic excellence.  
The meeting started with an explanation from the speech therapist at Park Hill Elementary in New Haven.  She explained that, due to Lilly's hearing loss, she qualifies to attend a special education preschool.  The preschool meets every Monday, Wednesday, and Thursday from 9:15-11:45.  The class is made of students with more sever handicaps, such as Down's Syndrome and Autism.  The therapists would pull Lilly out of class to work with her.  She would also be bussed to and from school.  I asked the therapist what the plan would look like if we chose a parochial school for Lilly.  At first she said that wasn't an option, so I pressured her again.  She said if we choose not to send Lilly to the special ed. preschool, which wasn't in her best interest, we would have to drive Lilly to therapy at an elementary school close to us once a week.  She then went on about how better off Lilly would be in the special ed. program.  This speech therapist has never met Lilly.  At the end of the meeting she finally asked what I do for a living.  I told her I am a special education teacher at a Lutheran school.  She just said, "Oh, then you know how this works."  I also know that this particular speech therapist has been assigned to Central Lutheran and hasn't had stellar reviews herself.
After talking with the speech therapist from Park Hill, I had a private conference with Cindy, our rep. from First Steps.  I told her all my concerns, which are... 
Dave and I both feel Lilly should stay home one more year before attending preschool.  We will do whatever it takes to get her the therapies she needs, but we know her better than anyone else, and know her cognitive abilities are great.  I can recognize Learning Disabilities, and Lilly doesn't have one.  Once she gets hearing aids, things may be totally different for her.  East Allen county schools have a terrible reputation.  We are the biggest advocate for Lutheran schools.   I also know that if Lilly qualifies for services, they HAVE to provide them for her regardless of the school we chose.  My gut is telling me this is wrong, but I really want to make the right decision for Lilly.  I don't want to hinder her growth, but I have to look at the whole picture and not just her disabilities.
After I vented, Cindy told me that she completely understands.  Her daughter has Down's Syndrome and she was presented with the same options when her daughter was young.  She opted to have private services for her daughter instead of enrolling her in school there.  She said she would give us a list of therapists, if that was something we wanted to do, but couldn't do that at this meeting.  I would have to talk to her separately, outside of official meeting time.  She just reassured me that there are options available.  Some may cost more than others, but we do not have to make a decision today.  She suggested that we keep Lilly in the system for now, because it's easier to say no later than re-enroll if we change our mind.  Also, right now all her services are covered, which is a HUGE blessing.
So, now we need to re-assess Lilly though First Steps to see what services she will qualify for.  She will definitely qualify for speech therapy, but may test out of physical therapy and occupational therapy.  She has met her milestones in those areas.  The therapists will continue to come to our home until September, when Lilly turns three.  We are praying that God gives us guidance for what to do after that point.

Lilly's Auditory Brainstem Response

Lilly's speech is delayed. She has been enrolled in speech therapy through First Steps since we got home from China.  She has made advances, but not nearly enough.  In November, we had tubes put in her ears after her second cleft palate surgery.  She had a great deal of wax and fluid, which is common in children with a cleft palate.  After the tubes were put in we noticed a definite change in Lilly.  She could hear music for the first time.  It was amazing to watch her face light up in church when she noticed that the choir was singing.  She started saying a few new words, but not as many as a typical two year old would say.  We went back to ENT to have hearing tests done.  Usually, infants are tested for hearing problems, but we don't know if Lilly ever was.  It would't have really mattered, but we were starting from scratch.  Both tests came back that she had some hearing loss, but couldn't detect how much or in which ear.  So, they suggested that she have an Auditory Brainstem Response test, which is a sedated test that measures how much sound is getting to the brain.  They found that Lilly has mild to moderate hearing loss in both ears.  With hearing aids she should be able to hear at a normal level.
I was both sad and relieved when the audiologists gave me the news in the conference room.  I was sad that Lilly has to go through more struggles.  I wish things were easier for her.  I was also deeply relieved.  Her hearing loss explains so much about her speech.  I wish I knew how much she is actually hearing.  She is such a smart girl and has learned to adapt so well.  She follows multi-step directions so well, you wouldn't be able to tell she couldn't hear you.  I am excited to see the world open up for her once she can hear.  I am eager to hear her ask for what she wants and tell me how she feels without getting frustrated.  Lilly has taught me so much about endurance.  I know she will thrive with this challenge.
I also believe God will use this to His glory.  One of the nurses stopped to talk to me in the recovery room about adoption and Lilly's story.  I was able to share what a miracle she is and how great God's plan is for her.  She was a little groggy witness.  It's impossible not to see God's handprints all over that child.  As a mom, I want to 'fix' everything and make it 'all better'.  However, I've learned that my way is not always the best way.  I know my children were saved for a purpose and put in our family for a reason and they will do great things.  The obstacles that they must face will give them character and hope (Romans 5:3-5).  Who knows the impact they will make?  My prayer now is that God will equip us to help Lilly and that He will put the right people in place to help her.
So what's next?  In a couple weeks we will take Lilly back to ENT and meet with the pediatric audiologist who works specifically with hearing aids and go from there.  We will be sure to post updates.  Thanks to everyone who has been praying!  We really, really appreciate it!

Weekend in Indianapolis

For Dave's birthday this year, we surprised him with a weekend trip to Indianapolis.  I was able to book a suite at the Staybridge Suites in Fishers that included four tickets to the Indianapolis Children's Museum.  We spent all afternoon on Saturday at the museum.  Then, we checked into the hotel, ate supper, swam in the pool, and finished the night with popcorn and a movie.  It was the perfect day.  The kids were so well behaved.  Lilly did really well considering we missed her nap time.  Liam was extremely excited!  His reactions to the dinosaurs made the whole trip worth it.

Liam was so excited to see his pal Bumblebee at the entrance to the museum!

digging for dinosaur bones

Lilly wouldn't leave the step.  Heaven forbid she get dirty.

Indy 500 race car

The kids loved the Science Works section.

Lilly loved playing pretend in the healthy house.

Liam could have stayed at the construction site all day.  He let Lilly help him do some of the work.

The carousel was a big hit with both kids!

Liam loved climbing up into the tree house.

Liam and Lilly worked hard to make their own sculptures.

What a beautiful creation and great team work.

The kids got to become scuba divers and look for things hidden in the ocean.  The pack was almost as big as Lilly!

One of the new exhibits this summer is all about China.  As a preview, they have a section about the Terracotta Soldiers.

We successfully wore Lilly out.

After swimming in the pool, the kids took a bath and then snuggled on the couch to watch The Lorax. 

Liam woke up really early (even with Day Light Savings time), so he took a much needed nap on our way home Sunday afternoon.

February 2014

Despite having another snowy, cold month, we have had some fun.  Here's our February in review through pictures -

The kids love watching movies on their chairs.  

Lilly didn't have a nap, so she was exhausted.

One of the kids' favorite activities is turning the couch into a fort.

Liam's Valentines (crayons melted in mini muffin molds)

Liam is a big helper and pushed Lilly on the swing at the park.

Liam loves the snow.

Lilly prefers puddles to snow mounds.

When Lilly falls in the snow she doesn't quite know what to do.

Chillin' on the huge snow pile at the park

Snow, snow, and more snow - Our piles on the sides of the driveway were so large they almost reached the top of the light post.  It has been the snowiest winter since the civil war.

Lilly's new snacking spot

Uncle Rem came home for a visit.  We were all happy to see him!

Lilly loves to dress up.  She's our little diva.

Liam's Preschool Valentines Party

Liam was excited about the heart shaped snack.

I was able to join the party, which made Liam happy.

Liam painting with his buddies Sam and Raven

Sugar rush!

The kids' supper on Valentines day

The kids' lunch on Valentines day

cheese!

Lilly playing with the cradle Grandpa Herman made her for Christmas

Look at all those words Liam can write!

Our little girl is growing so fast!