No JOKE . . . . 

I haven't forgotten about you all!  I know what you're waiting for, so I won't delay.  Carter has grown 2 1/4 inches since October!  NO JOKE!

The pants that he's been wearing for the past three or four years are starting to show signs of getting too short!  WHAT?!?!  

As for the shot, it is just part of our evening routine and we've continued with no resistance from Carter, and that, is without a doubt, miraculous! 

Medically, he's doing great.  We have seen no signs of tumor growth or signs of any negative side effects from the medication.

We received our second shipment of the medicine recently with no problems at all.

I had a meeting last month with Carter's teachers, aides and therapists and we are making some GREAT progress this year in school.  His teacher even commented that he's seeing an improvement in his maturity.  YES!!!!  

I find myself on edge sometimes when I think about waiting until June for his next MRI, but I force myself to trust that God will give us the wisdom to know if/when we need to move it up.  Having that faith provides me with peace enough to enjoy the fantastic results we're getting from the medicine and the ease of the process.

So thankful that God has provided . . . . . once again!  

Up, Up and Away!!!

Almost an INCH!

I know this may seem impossible, it certainly did for me.  After measuring and remeasuring a dozen or more times and getting some input from other mothers using similar medications with their children, we realized this is for real!  Carter has grown almost an inch since October 13th, in 17 days!  

It is unbelievable and honestly, part of me still thinks there has to be something we're doing wrong.  We've followed the guidelines they gave us to help get accurate home measurements and they are very consistent. 

It's amazing!  We are so thankful that we are seeing results so quickly and with only a few mild side effects that seem to have gone away.

   

Measuring UP!

Carter is starting at a height of 112 cm or 44 1/8 in.  His weight is 29 kg or 63.98 lbs.  I will try my best to only measure him once per month, but he's already asking for us to measure him each day.  I'm so happy that he's excited about growing.  It makes this whole thing easier. 

We are told to expect a growth of around 4 inches in the first year, so I thought it would be really neat to take a picture each month and have a photo timeline of this first year.  Here's our first picture.  

The Journey Begins . . . . 

Once the insurance approved the medicine things moved pretty fast.  Within the week we had received the medicine from the pharmacy and had the training from the in home nurse.  

Just a few weeks ago the mere mention of a "poke" or blood draw sent Carter into a panic.  He would obsess about it, worry and sometimes cry just at the thought of getting stuck with a needle.  Then when it came time to actually get the poke, forget about it.  It was impossible.  Fortunately, God didn't stop looking after us once the medication was approved.  He's been with us every step of the way, including this part. 

Working up to this point, we had been talking to Carter about the shots and explaining that he would grow as tall as daddy someday.  That he would be big and strong.  Of course, his little imagination got real excited about this and he started talking about all the things he'd be able to do when he gets so big and strong.  For example, he can't wait until he can removed a hot light bulb from a lamp.  We're talking exciting stuff! ;)

This kid amazes me on a daily basis, but this really took me by surprise.  As Ryan and I sat listening to the instructions from the nurse, Carter was excited, impatiently waiting until it was his turn to get his shots.  WOW!  Is all I can say.  This was a major concern for us from the beginning.  What if we can't get him to take these shots?  What if it's a miserable struggle each night?  The thought that we would be adding yet another struggle to the everyday issues we already have with him was unsettling to say the least.  When it came down to it, he sat still, sang "Be strong.  Don't be afraid.  God is with you always." as he got his first shot.  What a blessing.  

Now, granted, Ryan and I both got a poke to see what the needle feels like and honestly, I didn't even feel it.  Not a bit.  I can't express how thankful I am that this has gone so smoothly from the beginning.  Carter's had three shots, as of last night, and he's handled them well. 

One of the side effects are headaches, which he experienced last night.  It was quite severe, but we were able to get it to go away with Motrin.  He finally got to sleep, but was not his usual self this morning.  I had to pry him out of bed.  Normally, he's up well before anyone else.  I plan to give him Motrin with each shot to give his body time to adjust to the medicine.

Stay tuned to see pictures and updates on his growth as we reach milestones.  I'll also be posting information for other parents about our experiences. 

Thank you all so much for your prayers!

INSURANCE APPROVAL? . . . . . . YES, PLEASE!

Our family had a wonderful weekend in the mountains with some of our favorite people!  Aunt Shelly and Uncle Norman, Uncle 'erb and Aunt Felicia organized such a nice mini-vacation and we had so much fun!  Thank you so much for everything!  

As we were packing up to leave yesterday we got a call from the doctor's office with some great news!  They received the approval from the insurance company for Carter's medicine yesterday morning!  

We were all very excited!  On the drive home I made my phone calls to get all the other details worked out with the drug company and the pharmacy.  At this point, we are waiting on the starter kit from the drug company and waiting for the pharmacy to receive the approval from the insurance company.  Once all that happens the drug company sets up a nurse to come out to teach us what we need to know so we can get started, which will most likely be this week or early next week.  

Thanks for all the prayers!  

LETTER TO THE INSURANCE FROM THE MOMMY

October 1, 2012

CVS Caremark

Prescription Claim Appeals MC 109

PO Box 52084

Pheonix, AZ  85072-2084

RE:      Plan Member Name:  Carter Richardson

         Plan Member ID:  

Dear CVS Caremark appeals department,

I have received your letter of denial for our request for the medication, Omnitrope, for my son, Carter.  Dr. McCormick will be sending in another letter to appeal this decision, but I thought it might be beneficial for you to hear directly from me, his mother.

I’m sure you’ve already received a complete medical history on Carter and you are aware of the struggles he’s already endured.  So, what I want to tell you is about how this is affecting Carter and our family on a personal level.

I started getting concerned about Carter’s growth when I realized at the age of 6 he was still able to wear shoes I had bought for him when he was three.  As I paid closer attention, I saw that his clothing was the same story.  That didn’t seem normal and it has not gotten any better.  When we saw the doctor I voiced this concern.  That was about a year and a half ago.

We have not taken the decision to put him on Omnitrope lightly.  It has been a heavy burden for us, but knowing that this medication will help him in so many ways is why we have made the decision to move forward. 

Carter is less mature, considerably shorter and still looks like a chubby baby in comparison to his peers.  I recently pulled a photo out that was taken in 2009. I showed it to my husband and asked him if he could guess when it was taken.  When I told him it was taken three years ago, he was shocked.  It looks like it was taken recently.  Carter is not growing and though his bone age isn’t delayed now, it is only a matter of time before it will be. 

The fact of the matter is that the earlier you start a child on growth hormone replacement, the better the results.  His pituitary gland is producing little to no growth hormone and it is inevitable that his bone age will fall behind.  If we are made to wait until this happens before we are able to initiate this medication, we are losing precious time that we will never get back. 

Please consider my son, his future and his wellbeing when you make your decision to approve our request.  Thank you in advance for your consideration.

Sincerely,

Shawna Richardson

Carter’s Mommy    

INSURANCE APPROVAL . . . . NOT!

Fortunately, most of this has been handled by the doctor and his staff.  This is what I know.  They filed with our prescription insurance coverage, CVS Caremark.  CVS Caremark denied the request on 9/21 because Carter's bone age test results showed that his bone development is not delayed.  I received the official letter of denial from the insurance company in the mail Friday.  Our doctor sent in the appeal letter earlier in the week, so I decided to call the claims department and find out the status of the appeal.  

They also denied the appeal on 9/27, which is frustrating.  I did, however, get some information about the channels these things go through.

When the initial request is received it's reviewed and if all of the criteria aren't met it's automatically denied.  An appeal is filed and goes to the first level appeals department.  Once again, if all the criteria aren't met, it's automatically denied. When the third request/second appeal is sent in it goes to the second level appeals department.  This is where they are able to take other things into consideration and they have the power to override the criteria qualifications and make a decision based on ALL of the information received, not just their list of criteria.  Really?  What. A. Waste. Of. TIME!

I'm not getting my panties in a bunch just yet, though.  I still feel like it's all going to work out.  It's just their process, albeit an asinine process.  No wonder they have to charge so much for insurance, they're paying three departments worth of employees to do ONE JOB . . . . three times!  

Nope, not going to let this get me down.  We knew from the beginning this can be difficult and that our insurance is not one of the easiest companies to deal with.  The medication costs between $2,000 - $3,000 per month, so it only makes sense for them to be careful who they're dishing it out to.

When I spoke with the rep. at CVS Caremark, I specifically asked what happens if he's denied a third time.  She said that is usually the final say.  Then I went on to explain that since he's producing little or no growth hormone, it's just a matter of time before his bone age will be behind.  Are we supposed to just wait until that happens?  It seems silly to do that since we know without a doubt it will eventually happen.  She said those are the things that we need to send in our letter for the second appeal.  

I'm hoping to hear something this week.  When I spoke to the doctor on Friday, they hadn't received the notification of the second denial.  Once they receive that, a new letter, along with all the info will be sent again.  When CVS receives it, the turnaround is usually 48-72 hours.  So, we should know something by the end of this week or beginning of next week.