3T in a 5T World

So, here it is...

The Norditropin FlexPro Pen.  The pen is pre-filled with a month's worth of growth hormone fluid.  Apparently, it's very easy to use.  You snap on a new needle for each dose, turn the dial to the appropriate dose (the dose starts off very low and gradually increases), and give the injection.  No big deal, right?  Right!     Our wonderful Pediatric Endocrinologist even gave us a prescription for a tube of Lidocaine to numb up Jonah's leg before his first injection ( <---I have smart friends like Tammy and Gena who suggest brilliant things like this!).  Other growth-hormone-therapy-moms have said that the needle is so small that their kids don't use the Lidocaine.  A couple even do the injections while their kids are asleep!

The pen is sitting in the fridge waiting for a nurse to come to the house to teach us how to use it and supervise Jonah's first dose.

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I told Jonah earlier this week that his "growing medicine" is given by injection.  He quickly replied that he would rather just grow up "on my birthdays."  I was sitting with him while he was getting dressed, and he referred to the tag in his pj's that said that they're a size "5T" and explained that he wears 5T pajamas because he is five years old.  I sighed and showed him the tag in his jeans. 3T.  He looked at it and said, "Oh."  We talked about how he is still a big boy; a healthy five-year-old boy just like the other boys in his class.  His body just needs some help catching up.

In case you were wondering, this is what a box of one hundred disposable needles looks like!  To be honest, they make me a little queasy despite everything I've read about them being so small and nearly painless.  Matt thinks they should be kept in the refrigerator along side the pen.  

That's where we are right now.  I'm a queasy mom with a fridge full of needles and a five-year-old who looks three.  I'm a mom who is hopeful that her son won't be treated like a kindergartner when he's in second grade, and that maybe his days of being patted on the head or carried around by other children are numbered!  

I think he's ready to look as big as he feels!

Dinosaurs and Hospital Gowns

Earlier this month, we spent the day at Vanderbilt where Jonah had a sedated MRI and another round of blood tests.  It was a difficult day for the poor little guy.  Nothing puts a kid with a fear of needles over the edge like discussing how his IV is going to work.  I can't say enough about the people who work at Monroe Carroll Jr. Children's Hospital.  They are absolutely unbelievable.  The hero of the day was Sarah Beth from Child Life Services.  This woman showed up and sat with Jonah who buried his head in my chest in an effort to actively ignore her.  She chatted with him, explained to him what was going to happen, showed him pictures of the MRI machine, all while Jonah sat there quietly freaking out.  Every time she asked him a question, he responded with a whiny, "I don't know."  When she was done familiarizing him with the process, she broke out markers, dinosaurs, farm animals, play-doh and a toy grocery store set.  She played with him for two hours while we waited for the MRI.  She didn't bring him toys so that he could play, she sat on his bed and played with him.  By the time it was Jonah's turn, he calmly and happily went back with Sarah Beth, who stayed by his side until he was asleep.  After the test, as we sat with him in recovery, she returned and brought him a long strip of dinosaur stickers.  Child Life Services is truly incredible, and it made a seemingly terrifying and stressful experience seem not so bad.  After the MRI, we brought Jonah up to Endocrinology where they drew blood from his IV every five minutes for half an hour to test his cortisol levels. 

Our doctor called a few days later with the results.  Jonah's pituitary gland is perfect.  His cortisol levels are great.  Strangely, his growth hormone levels were also within the normal range.  It's a little frustrating.  Even though we have two blood tests showing his levels to be low, and one bone scan showing that his bone growth is slow, this test showed everything to be normal.  Jonah is back to an ISS diagnosis, and we are back to having to fight to have growth hormone therapy covered by his insurance.  

Fast forward to this morning!  Pharmaceutical company Novo Nordisk called to tell us that our doctor has enrolled us in the NordiCare Jump Start program.  We have been assigned a NordiCare case manager who will be handling communication with our health insurance company, submitting our claims, and working on appealing when that claim is inevitably rejected.  In the meantime, they are sending us a free first month of Nortropin growth hormone therapy.  The idea is that when our claim is rejected, our doctor will be able to appeal and show the insurance company how effective the therapy has been for Jonah and how important it is that he continue treatment.  So, a box full of dry-ice-packed growth hormone pens and the necessary equipment will be arriving at our house this Wednesday!  Subsequently, a nurse will come to our house to teach us how to administer it, let us practice in a cushion and stay to help us give Jonah his first shot. 

The next big hurdle is breaking it to Jonah that the treatment is a shot...every day.  He's going to be thrilled.