Easter 2014

We went up to Michigan on Good Friday and celebrated Easter on Saturday.  The kids opened Easter baskets and hunted for eggs.  Liam and Lilly got to test out the new car at Grandma & Grandpa Kusch's house.  In the afternoon we attended a Tiger's game.
For the first time since we've been married, we didn't attend our church on Easter Sunday.  Dave also didn't play the timpani, which he normally does.  We actually sat together as a family in the pew.  Our flight to Hawaii was right after church at the Detroit airport.

Lilly 'helped' me set the table by putting pretend eggs at everyone's seats.

Garage Floor

Over spring break we decided to have the floor of the garage painted.  Because we have a small house, we use the garage when we have parties.  Sunday night we cleared everything out.  On Monday the floor was prepped and on Tuesday it was finished.  Unfortunately, the floor was not dry until Friday night.  So, when the kids went to bed we moved everything back into the garage.  Thankfully, I went through each box during the week and added many new things to the Church rummage sale pile.  The garage was ready just in time for Liam's birthday party.

Before

After

Liam's 4th Birthday

It is so hard to believe that Liam is four years old!  He has grown and matured so much over the last year.  This year he started Preschool and became a big brother.  We are constantly amazed with how smart, creative, and imaginative he is.  He also has a big heart and shows compassion.  He is so curious and wants answers to many things.  He soaks in knowledge like a sponge.  We hope that continues for him.  He is so verbal and often has a hard time shutting off his brain at bedtime.  He is a great story teller.  He also loves to sing.
We know that Liam is meant to do great things.  He still says he'd like to be an astronaut when he grows up.  He loves learning about space and rockets.  His favorite color is green and he says his second favorite is blue.  He loves Jake and the Neverland Pirates, Octonauts, and Bubble Guppies.  Liam has begun telling jokes, which often aren't that funny, but are pretty clever for his age.  Liam loves to do art projects and play with play-dough.
The greatest thing to witness is the blossoming of his faith.  It is so great to hear him sing songs he learned in both Preschool and Sunday School.  He retells many of the bible stories he knows.  We know the Holy Spirit is at work within him.  He says his own prayers at bedtime, which is so sweet to hear.

Right after his third birthday, Liam decided he wanted a Buzz Lightyear party for his fourth birthday.  He talked about it all year.  He said he wanted a rocket cake with Buzz on top.  Well, although I didn't make a rocket cake, we did have a Buzz Lighteyar themed party.

The Decorations

planet cupcakes and rocket sugar cookies

Liam was so excited about all his gifts and wanted to play with each one for a little bit before opening another one.  He did a great job of thanking everyone for his presents.

Liam showing Uncle Brady his new Gup X (from Octonauts)

Liam's favorite planet is Saturn, so he got the Saturn cupcake.

The black frosting stained a bit, but tasted good.  Verona seemed to enjoy it!

Liam's Birthday

Liam had a great birthday.  He took some rocket cookies to Preschool as a snack.  We saved some of his presents for his actual birthday.  He asked for the Imaginext Batman toys.  Both Liam and Lilly were excited about them.

Liam's face says it all.

Liam got a little too close to the candle when he went to blow it out, but it didn't hurt for long.

Update on Liam's Heart

Liam had his annual cardiologist appointment today.  Because Liam's heart condition has been stable, we only need to visit the doctor once a year.  There are three areas of concern with Liam's heart -

Fused Left Ventricle Valve
A normal, healthy valve should have three parts.  Two of the parts in Liam's valve are fused together.  This means he only has two working parts in the valve.  This causes leakage in the heart, which causes the murmur sound.  The doctor ranked his leakage.  Liam's ranks at an eight, which is up from last year.  Last year his leakage ranked at a five.  Although there is a slight increase, it is only a concern if it ranks at forty or higher.  Overall, this has remained stable.  The doctor explained that the number can fluctuate slightly when Liam has a growth spurt. 
The murmur sound in Liam's heart is also ranked.  His ranks at a 2.5 out of 6, which means it is mild.

Narrowed Artery
The artery leading to Liam's heart is narrowed.  This could be of concern if the restriction is not allowing enough blood to flow to the heart.  As of right now, this is also remaining stable and is not a concern. 

Hole Between the Upper Two Chambers
All children are born with a hole between the chambers and it almost always heals itself right away.  Liam's has healed slowly.  It decreased in size since our last visit.  The doctor said it should be completely closed by the time Liam is six.  We're hoping it will be completely healed by our next visit.

Liam should be able to participate in all the activities of a normal four year old boy.  Our next cardio. visit will be next year after his 5th birthday.

Here are some of the pictures from our visit to the cardiologist -

Liam has the routine down.

Lilly kept him company.

waiting for the doctor to arrive with the results

Liam getting all his vitals checked

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!