One Year Later!

Next week will mark one year since Jonah received his first Norditropin pen in the mail and started treatment!  Look at this!  It's a giant apple juice bottle filled with discarded needles, spent pens and dirty alcohol swabs.  Gross, I know, but jeez! Look how many needles are in there!  

Before we threw it away (don't even get me started on what you're allowed to just throw in the trash in Tennessee), Jonah noticed this little sticker floating around in the bottle.  We don't remember how it got in there, but I like it.  It's a little treasure in with all the medicine and needles and scraps of swabs.  Just a little note to remember the reward at the end of the journey! 

  It has been a crazy year of x-rays, blood tests, injections, finishing kindergarten and lots of growing up!  For his birthday last month, Jonah received age-appropriate, size six jeans!  They need to be rolled a little (a lot) at the bottom, but at least they don't look like the legs on one of those inflatable dancing carwash guys.  

While Jonah's progress can't be overstated, I just noticed that the shirt he wore to the endocrinologist yesterday is the same shirt he is wearing in the picture from last year's blog post about his fifth birthday.  LOL! I guess it's just a reminder that we have a long way to go even though we have already come so far.  

How about a quick update first?  Jonah is up to 43 inches and is in the 11th percentile in height for his age.  This is completely unbelievable to me. I so clearly remember the day we were sitting in the pediatricians's office learning that he had dropped from the 25th to the 12th percentile.  It's amazing that in one year, he has gone from below the first to the eleventh.  It's so unbelievable that you are probably sitting there refusing to believe it.  I don't blame you.  Here's the graph.  You can't argue with graphs!  I love graphs.  

We also learned that his rate of growth has more than doubled.  He was growing about 5cm per year and now he is growing 12cm (ABOUT FIVE INCHES!!) per year.  The doctor doesn't expect him to be able to maintain that rate, but he described it as "quite awesome" for right now.  Quite awesome.  

We also did another bone age scan that involved a simple x-ray of his hand.  

  It turns out that his bone age is a year and a half behind his real age.  So, he has the bones of a four and a half year old.  When we started, his bone age was only a year behind.  This is actually good news for us!  Since his bone age is a year and a half behind his real age, he will continue to grow for a year and a half after boys his age would normally stop growing.

 As an aside, nothing makes people peg you as a "helicopter parent" faster than knocking down an x-ray tech to take a phone picture of your kid's scan.  Yelling, "It's okay! I have a blog!" doesn't help.

Any lingering questions I had about whether or not we're doing the right thing by treating Jonah's ISS with growth hormones have been wiped out by just one year of school.  The other kids haven't been intentionally mean, but they have certainly noticed that he is different and have been quick to remind him.  For example, there was a boy in Jonah's kindergarten class whom he absolutely adored.  He talked about this kid every single day after school like they were absolutely the best of friends, but Jonah said that they didn't play together at recess.  When I asked why not, he said that the kid had informed him that he was too little and that he would get hurt playing with the boys. 

We also had some discussion with Jonah's teachers and pediatrician about whether or not it would be in his best interest to put him back in kindergarten after he had already started first grade.  Jonah's teacher described him as one of the top three students in her class of twenty, but still recommended that we consider placing him back in kindergarten because of his size and age.  His guidance counselor and pediatrician agreed.  I called the Magic Foundation, and one of Magic's co-founders called me and assured me that short stature is no reason to hold Jonah back when he is obviously doing just fine.  We discussed simple accommodations the school could make (like making sure Jonah has a chair that allows his feet to touch the floor) and how to encourage them to teach inclusiveness to students who may reject him because of his size. Yesterday, Jonah's pediatric endocrinologist agreed that Jonah should be allowed to continue normally in school.  

So, that's where we are now.  A year into his journey, Jonah is rocking this whole thing.  He is growing in stature and confidence and joy!!  Stay tuned! He has nowhere to go but up!! 

The World's Most Wonderful Graph

Okay, I know this picture is pretty bad.  I'm not going to tell you how long it took me to get a decent picture of this graph with my phone.  I'm not going to tell you how many times I carried it from room to room looking for the best light.  I'm not going to point out that I accidentally took a picture of my own shadow.  I won't tell you how long it took me to edit it online or how stupid it is to have to edit a picture of black dots on white paper in the first place.  All I will tell you is that you HAVE to see this!!!

The first two dots indicate Jonah's height percentile (according to the CDC) before treatment.  It was below the first percentile.  Awesome, right?  You can also see that the line flattens out a little bit between the second and third dot, indicating that his rate of growth was actually slowing down.  If his rate of growth had continued to slow, he would have just kept falling farther and farther away from the curve until he wound up having to wear Gymboree clothes to post-college job interviews.  The third dot was the last time he was measured before starting growth hormone treatment, then WHA-BAM!!!

  The fourth dot jumps enthusiastically toward the bottom line of the graph!  Unfortunately, the heartless slobs at the CDC don't think that a kid deserves a line until they are in the third percentile, so it still appears that Jonah's height is below the curve, but it's not!  I promise!! Jonah is firmly in the second percentile.  That means that in a room full of 100 kids his age, there could be two kids who don't want to pat him on the head like the kids at school.  Those kids drive me crazy.   According to this, my favorite graph in the world, Jonah was roughly 37 inches when we started the shots in October and was 40 inches when he was last measured by the endocrinologist in February.  This graph has earned a place of honor in the long-neglected baby book.

My favorite part of the whole process is how FAST it's happening!  Jonah has gone up three shoe sizes this month!  At our last appointment, I addressed my concern that Jonah was just growing too fast and that maybe we need to reduce his dose.  The doctor asked Jonah if his knees or hips ever hurt, and he said no.  The doctor asked him if he ever had headaches, and Jonah said no.  Then the doctor smiled at me and explained that everything looked perfect and that because the dose is determined by Jonah's weight, it would actually be INCREASING since Jonah has gained weight as he has grown taller!

  Because the change has been so quick and significant, it has been easy for Jonah to see the results.  It is exciting for him and it makes dealing with the injections every night a little easier.  For the first time, Jonah will not be wearing last year's summer clothes this year.  He can reach the remote on top of the entertainment center.  He is much taller than his little brother.  He is brushing his teeth without needing a step stool at the sink.

You should see the difference it is making in his confidence.  Rarely does he ask if he's "big enough" to do something the way he used to.  He plays on the "big" playground equipment and flies down slides that used to terrify him.  Obviously, that's a normal part of growing up, but I like to think that feeling like he is finally "big enough" to do things is encouraging him to actually DO them. 

What we are NOT seeing is the uncertainty and self-esteem issues that concerned me back in October.  I was worried that Jonah would think he was "sick" since he needed medicine, or that he wasn't good enough the way he was.  I was worried that we were over-emphasizing his appearance rather than celebrating the fact that he was a perfectly healthy kid.  But none of that seems to have entered that adorable little head.  All he knows  is that he is growing up like everybody else.  Finally! 

Kudzu and Giants!

According to our super-scientific and highly accurate pencil marks on the wall, Jonah grew approximately one inch in January alone!  That brings his grand total up to around 2.5 inches since the beginning of the school year.  I swear, he's growing like kudzu.  I have heard that, in Georgia, kudzu grows so fast you can actually hear it growing.  How's that for full service?!  Information on growth disorders and random vegetation trivia all in one place.  Thank God for the internet.

  

The nurse who taught us how to give the injections told us not to expect much progress in the first six months of treatment, so you can imagine how surprised we are to see him shooting up like this.  It makes me a little nervous to think about the rack-like effect this could be having on his joints.  In fact, it made me so nervous that I began to think that I was administering the growth hormones incorrectly.  When a child starts growth hormones, they begin at a low dose and work up to what their actual dose will eventually be.  I started wondering if maybe I was supposed to start each Norditropin pen at the low dose and work up to the .8mg.  I wasn't doing that.  After a few days of obsessing about it, I began to have visions of Jonah's poor joints popping as they try to keep up with his insane growth.  I imagined him ultimately looking like this guy.

A quick call to the Pediatric Endocrinology clinic allayed my Jolly Green Jonah fears.  We are doing the shots right, and if Jonah is growing too quickly we could reduce his dose at his appointment in two weeks.  So, that takes care of that. :) 

Our other HUGE piece of news (besides the fact that i'm not ODing my kid) is that we have been accepted to the Novo Nordisk Patient Access Program!  This means that we will be receiving Norditropin pens, needles, and alcohol swabs at no cost for as long as Jonah's insurance refuses to cover it!!  

From the Novo Nordisk website:

The Norditropin^® Patient Access Program (PAP) reflects our commitment to social responsibility and our belief that a lack of financial resources should not stand in the way of necessary medical care. Through the Norditropin^® PAP, those who qualify may receive free medicine.   Eligibility is based on financial resources, cost of living, size of household, and out-of-pocket medical costs.

Upon approval, NordiCare^® will ship a free 30-day supply of Norditropin^® directly to the patient’s home.  Patients are eligible to remain in the program and receive monthly shipments as long as their financial and insurance situation does not enable them to afford Norditropin^®. Every 6 months, a NordiCare^® Case Manager will contact the patient to evaluate whether assistance is still required.   

So, that's where we are now.  Thanks to Novo Nordisk, we will be able to continue our kudzu-like march toward being back on the growth chart!  Look out, growth chart!  Here he comes!! 

  

Little Victories!

It has been so long since my last post, that you probably figured that Jonah is 6'5" and has been recruited to play college basketball by now.  Not quite, but close!

We have finished Jonah's third Norditropin pen and his fourth is supposed to come on Thursday.  He continues to improve in his willingness to take the injection and his level of calm about the whole thing.  He assembles the injection himself, counting off the steps from taking off the cap to snapping on the needle and dialing up the dose.  He picks which leg he wants to use (he has decided that his belly and butt are fully off-limits), and I do the actual injecting.  When I press the button, he counts down from five, we yell "BLAST OFF!" and the pen flies away like a rocket.  Because of the New Year holiday, there will be a longer gap than usual between pens, and I anticipate that he will need some time to get back to being such a pro.

The literature claims that we shouldn't expect to see growth for the first six months, but I have to show you something after only three months.  Check this out...

The bottom line is Jonah's height at his fifth birthday, September 26, 2011.  The top line is his height yesterday January 1, 2012.  It's about a half an inch of growth!!  Not bad for a kid who usually only grows a few centimeters per year!  Jonah has also moved up to 4T pants.  He was firmly a 3T when he started kindergarten.  Now he can reach the remote on top of the entertainment center.  His teacher, Ms. Ashley (whom Jonah LOVES) noticed that he was growing when he stopped soaking his shirt in the water fountain! 

Our insurance company firmly rejected our claim and our appeal for the Norditropin synthetic growth hormones.  We are working with the NordiCare program to see if we qualify for their patient assistance program.  We have to submit all kinds of tax forms and medical forms as well as apply for Medicaid and submit our anticipated rejection.   So, I have filled out an application for Medicaid and have an interview on January 10.  I have left a message for the case manager handling our interview to ask if we could do the interview over the phone, since the goal is to be rejected.  Understandably, she never responded.  She is entirely too busy with people who need help to mess with people who waste her time seeking a rejection letter.

  I have also contacted the Magic Foundation and spoken with a wonderful woman named Melissa whose entire job is to get appeals approved by insurance companies.  So, if patient assistance through NordiCare doesn't work out, there are still other options. 

In the meantime, we are enjoying watching Jonah's pants get a little shorter and his confidence get a little bigger!