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!