The Battle Continues

In April we switched our health insurance to Cigna through Steve's new job.  I was so excited to finally have a group plan offered to us through an employer.  I knew we would have a few hiccups getting Jonah's prescription for growth hormone switched over, but I was sure that it wouldn't be anything like what we've dealt with in the past to get him his medication.

Boy was I wrong.

Right away (in May) Cigna denied Jonah's prescription.  Frustrated and angry, we appealed their decision.  They denied our appeal.  Even more frustrated, more angry, and now beat down, we appealed it again (we did a level 2 appeal).

We found out today that Cigna has upheld its decision to deny growth hormone for Jonah.

I can even put into words how I feel.

My son has a chronic condition.  His body does not produce growth hormone on its own.  He was born this way and was diagnosed when he was 8 months old.  We've had lots of doctors tell us that he has one of the most clear cases of Growth Hormone Deficiency they've ever seen.

The good news is that there is a treatment - a synthetic form of the growth hormone produced in our bodies - that is administered by injection.  However, it's a very expensive drug so insurance companies do not like to cover it.  Jonah started growth hormone treatment when he was 15 months old (he gets a shot every day).  With the drug, Jonah grows and has been able to maintain relatively average height throughout his childhood.  Without the drug, he does not grow.  He's been out of the drug for four months and counting. 

Tonight, I hugged him close and told him that Mommy and Daddy are fighting very hard to get him his medicine.  I told him that we are battling against a big insurance company and that it's very, very hard, but that we aren't going to give up.

He thought about it for a minute and in an effort to make everything okay, he said, "It's okay, I can wait 10 years to get my medicine."

Then about a second later he said, "No, wait, I don't want to wait 10 years.  Because then they (other kids) will be way taller than me.  And they might not let me in to high school."

--------- (that's the sound of my heart breaking)

Jonah, I love you so much.  I will keep fighting for you.  I will do whatever it takes to get you your medicine so that you can grow.  Mommy and Daddy are so tired.  For some reason, everything is so hard for us right now.  But, we will keep going because we love you more than you'll ever know.

Lord, please give Steve and I the strength to continue.  I know you are here with us to help us through this hard season of our lives.  Thank you.  Right now, we are at our limit.  It all feels like too much.  We have no margins, no places of rest.  We need more of you. 

Help us to get Jonah approved for his medication.  Help us to find a house.  Help us to figure out school for our kids.  Help us to find rest.  Protect Steve as he continues with the grueling daily commute.  Help us to continue to release it all to you.      

Psalm 22:1-5
My God, my God, why have you forsaken me? Why are you so far from saving me, so far from the words of my groaning?
My God, I cry out by day, but you do not answer, by night, but I find no rest.
Yet you are enthroned as the Holy One; you are the praise of Israel.
In you our ancestors put their trust; they trusted and you delivered them.
They cried to you and were saved; in you they trusted and were not disappointed.  

(For more on Jonah's story and our insurance battles, go here and here). 

Waiting

On Tuesday, we had a hearing for our Level 2 Appeal with Cigna for Jonah's medication.  It was a conference call and Steve and I both requested to participate.  They gave us 10 minutes to advocate for our child and then we had to hang-up while they deliberated.  They told us they would notify us of their decision in 5 days.  We are waiting and praying.  A favorable decision means that Jonah can resume his daily treatment of growth hormone, a drug that he's taken since he was 15 months old and one that he needs in order to grow.  (He has not had his daily shot since April 1st when we switched our insurance over to Cigna through Steve's new job).  An unfavorable decision means that he will need to have an unpleasant procedure done in the hospital where they draw his blood every 30 minutes over 7 hours - all to confirm a diagnosis that he already clearly has. 

On Thursday night, we made an offer on a house in Oakland.  Offers were due by Friday at 7pm.  We were their 3rd offer and we are pretty sure others came in after us.  We are waiting and praying and hoping that they pick us.

We found a school in Oakland that we like very much.  It's a really great match for our passions and desires for education.  They had room in second grade so Jonah got in.  Nicolas and Riley are on the waiting list.  More waiting.

These images have been in my prayer journal for a few months now.  I am continuing to present these requests to God.  Will you join me and pray for us as we wait?

*Update: We found out this afternoon that we did not get the house.  That's the second offer we've made on a house and the second rejection.  Time to start all over again.  We are tired. 

Piano Performances

In February, Jonah started piano lessons.  He loves it!  He practices on his own each day (no nagging necessary) and loves going to his half- hour lessons each Friday afternoon.  It makes me happy to see him doing something that he enjoys so much.  His teacher is very impressed with how quickly he is picking things up and says he's a natural musician.

In May, his teacher hosted a Piano Recital for all of her students so that they could perform in front of their families.  Jonah was very excited to be able to participate in the recital even though he'd only be playing for 3 months.

Jonah thinks the inside of a grand piano is super cool!

Just a week after the Piano Recital, Jonah got to play again at his school's Talent Show. 

We're proud of you Jonah and can't wait to see where you and music go in the future!

Disneyland Trip

I previously posted some video footage of Jonah dancing at Disneyland/California Adventure, but never got around to uploading the rest of the pictures from our trip.  So, here they are.  We had a fabulous time! 

Going through security at the Sacramento airport

Orange County!  On our way to the hotel to quickly drop off bags and catch the shuttle to Disneyland.

Obligatory family photo at the entrance

First stop - Star Tours - a ride that we visited several times over the 2 days!

Redone and now in 3D

Buzz Lightyear Astro Blasters

Jonah got picked for Jedi Training - THANK GOODNESS!  He had been choreographing his "moves" for days before we left for the trip, in preparation for this class.  He wanted to do it so badly.  For a minute, it looked like he wasn't going to be picked.  Jonah's excitement quickly turned into tears.  Then, at the last minute, they needed a few more kids to participate and they picked Jonah.  Tears quickly turned back into smiles.  Phew. 

He took his Jedi training very seriously

Our two five-year-olds riding Space Mountain by themselves! I was behind them with Jonah and Steve was by himself in front of them.  I sooo wish I could have seen their freaked-out faces!  Riley loved it.  Nicolas - not so much. (too fast)

Jonah rode with me.  This is his look of terror just before we went into the darkness.  Of course, at the end, he loved it and couldn't wait to go again.

Autopia

Who doesn't love driving a car when you're seven years old?!

Mommy and Daddy picture at the castle

We stumbled upon Goofy and walked right up for a picture.

Shaking his booty at the Phineas and Ferb dance party

Riley and Steve went on the Tower of Terror!!  Steve said it was "the scariest ride I've ever been on."  Fearless Riley was very proud of himself for going on such a scary ride.  Steve said he was the youngest kid on the ride.   

Mr. Toad's Wild Ride

It's a Small World

Meeting Mickey

YiaYia gave the boys $20 each to buy something at Disneyland.   They all chose to make their own lightsabers. 

Fantasmic (just before melt-downs!)

After two days of fun at Disneyland, we headed to Newport Beach for a bit of fun in the sun before driving to the airport. My brother Matt met us at our hotel in the morning and came with us to the beach. It was a gorgeous day!

Buckets+Water+Sand = Hours of fun!

Status Update

Piano recital and Talent Show - check

First grade finished - check

House refinanced - check

Kids at Heart - check

5 new summer staff started - check

Baseball season over - check 

Summer Day Camps kicked off - check

Home loan for new house approved - check

Finding a new house - in progress

Approval from Cigna for Jonah's medication - in progress (3 month long battle involving lots of phone calls and heartache)

Blogging more than once a month - in progress

He Marches to the Beat of a Different Drum

On our recent trip to Disneyland and California Adventure, we stumbled upon the Phineas and Ferb Rockin' and Rollin' Dance Party while walking from one ride to another. The characters from the show come out onto the main road and dance to some of the tunes from the show (which p.s. has got to be the most entertaining cartoon.  love the writing on that show).  Kids from the audience are invited to come up on the "stage" to learn the moves from the performers and dance along with them.

I had a hunch that this would be right up Jonah's alley so we stopped to watch.  As most of you know, he's never met a stage he didn't like so I figured he'd get right up there on the first song and start shaking his booty.  I was wrong.  He didn't get up for the first, second, or third song.  Apparently, he is a song connoisseur and he just wasn't feeling the first few songs.  But alas, the fourth song had a groovin' beat! He marched right up - front and center - and proceeded to do his thang.

I cannot watch this video without chuckling. I have a feeling you'll have a hard time getting through it without a smile, too!  Pay special attention to the awesome move 40 seconds in.

I love this little boy so much.  I love that all the other kids are following the performers moves, yet Jonah is off in his own little world doing his own funky dance.

There are many times when it makes me crazy, but in times like these, I love that Jonah marches to the beat of a different drum. 

"If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away." Henry David Thoreau

FAQ

For inquiring minds, here's a few answers to some of our recent "Frequently Asked Questions:" 

Where is Steve working and what kind of law is he practicing?
In March, Steve started a new job as an attorney at Baker and McKenzie, a law firm in San Francisco.  Baker and McKenzie is a very large law firm with offices all over the world.  His particular group does transactional law (as opposed to litigation), helping companies with international offices to figure out their employee benefits and stock options (or something like that). 

We prayed for a job for Steve for a long time.  And God provided one - a really terrific one doing work that he truly enjoys with people that he genuinely likes.  I need to remember to thank God for this.  I also need to remember to tell Steve how proud I am all of his hard work.  Our friend who is a law professor recently sent me this email, "By the way, congratulations to you and Steve about the Baker and McKenzie job. That is really an amazing firm.  You should be incredibly proud of Steve.  What he has done is an amazing accomplishment.  And praise God, of course."  It was a great reminder to me that Steve has accomplished a lot these last few years and I need to tell him more often how proud I am of him (which is hard to do while also acknowledging my sadness and grief over the location of his new job).

Is Steve able to work from home at all?
No.  The first firm he was working for in SF (from December to March) let him work from Sac on Fridays.  This one does not.  He stays over in the city on Thursday nights, but the rest of the days, he commutes back and forth.  He mostly takes the Amtrak to Emeryville and then a bus into SF (about 2.5 hours each way).  Some days, he drives to Pleasant Hill BART and then BARTs the rest of the way in.  He leaves the house around 6am and gets home around 7:45pm.  He is one tired puppy.  All the time.  Everyday.    

When are you moving?
We aren't sure.  Hopefully sometime this summer, before the boys start school in August.

Why haven't you started looking for houses yet?
We are re-financing our current house.  We plan to rent it out when we move and refinancing will help us lower our monthly payments.  The refinance process is taking much longer than anticipated.  Once we close on the refinance, we will start the process of looking for a new home in the Bay Area.  We're hoping this starts in the next few weeks.   

Where are you planning to move to?
We aren't sure but at this point, we plan to focus our search on Oakland, Alameda, and San Leandro.  After taking a few trips down the Bay Area, we concluded that we wanted to be as close to San Francisco as possible so that Steve could be home the maximum number of minutes each day.

What will happen to The GreenHouse? (I get this question a lot, worded in this exact way, which I think is interesting) 
The GreenHouse will continue on and hopefully thrive and grow!  The GreenHouse is God's and it always was.  He will continue to provide for The GreenHouse, just as He always has, regardless of my role or where I am living.  The Board of Directors of The GreenHouse will start a search for a new Executive Director sometime this summer.  If all goes well, we will start a new ED in October.  This means that I will work remotely for a few months (assuming we move in August).  

How are you doing with all of this?
I'm doing much better now, since I've had two months to pray through and process this major life change.  A few key factors have gotten me through the first leg of this journey.  First, I had an amazing team of people from The GreenHouse that met with me to pray and discern what my role there should be moving forward.  That team was a huge blessing to me, making me feel very supported and well cared-for.  Second, I had caring and wise friends who helped me talk through all the different situations and scenarios I could come up with.  The best thing they did for me was listen.  I am so thankful for them.  Finally, my God has been very near to me throughout this process.  I've felt Him leading, guiding, nudging and speaking to me in all those ways that only He can.  He's slowly peeling off my fingers that want to control.  He's opening my palms. He's opening my heart.  I'm recommitting my desire to live for Him - whatever and wherever that may be.

Thank you to all of you for being on this journey with us.  We'll keep you posted on our progress.     

Us on Easter Sunday.  Team Stratton.  All in.