Top Ten Reasons Why Having a Tiny Kid Rocks

Having a child with a growth disorder isn't all injections and doctors!  Sometimes having a small kid is really awesome.  So, it is with great joy and pride that I give you the Top Ten Reasons Why Having a Tiny Kid Rocks!

10.  It's easier to carry him to the house when he falls asleep in the car.

9.  He got in to movies as a two-year-old until he was four, and he'll be getting in to the children's museum as a four-year-old until he's six.

8.  He has an impossible strike zone.

7.  Hand-me-downs from his younger friends as well as his older friends.

6.  I have never complained that he has grown out of his clothes too quickly. 

5.  The looks of amazement on strangers' faces when it appears that a two-year-old is writing his name or that  a 3-year-old can name the planets of the solar system in order.

4.  We were able to keep him confined- I mean comfortable- in his crib longer.

3.  We have had to do limited kid-proofing around the house since he can't reach very much anyway.

2.  The slide is longer when you're shorter! 

1.  He still fits perfectly in my lap when we read together.  

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.

*******

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.

Tall Enough to be Five!

After a month of constant discussion about it being "almost my birthday," yesterday was finally the big day!  Jonah turned five.  We woke him in the morning with our ridiculous rendition of "Happy Birthday," after which Jonah threw back his blanket and asked, "Do I look taller?!"  We decided to go find out.  Matt brought him to the kitchen and helped him stand straight against the wall so that we could mark his growth like we did on his first day of kindergarten.  "Am I tall enough to be five?"  he asked.  We assured him that he is definitely tall enough to be five.  We left out that he is also tall enough to be three.

Two weeks ago, Jonah's endocrinologist called from Vanderbilt with his blood test results.  It turns out that Jonah does not have Idiopathic Short Stature, as originally diagnosed.  His blood work shows that he is actually growth hormone deficient.  Because of this new diagnosis, Jonah will not be starting growth hormone therapy right away, but has been scheduled for more testing.  Next week, we will head to the Children's Hospital at Vanderbilt where Jonah will have a sedated MRI of his pituitary gland and another round of blood tests, this time to check his cortisol level.  Only after we have confirmed that everything else is okay, will we be able to start the therapy.

Obviously, it became necessary to finally explain to Jonah that his body was not working like the other kids' bodies.  Jonah knew that he wasn't as big as the other kids but it hasn't stopped him from growing in confidence and kindness and making friends with other kids.  We told him that there were lots of different chemicals in his body that did all sorts of things, but his body didn't have enough of the chemical that made him get bigger.  I told him that the doctor can give him some medicine to help him to grow.  He thought about it for a minute, pacing around in the grass.  Finally, he came back and asked, "Do you think that instead of that medicine, the doctor could give me a potion to make me either an alien or a robot?"

 And there it was.  I was so worried about his little self-esteem.  I was worried that he would feel badly about being different, that he was somehow broken.  I was worried that he would ask me why we're even worried about how big he is!  But, for right now, his biggest concern is having to choose between being a robot or an alien, just in case he is given the option.

Jonah

This is Jonah.  Isn't he cute?  He will be five years old in three weeks.  He loves science and robots and space.  He started kindergarten last month and loves it.  He has already gotten in trouble for talking during quiet times, but I'm too relieved that he's talking to the other kids to care.  He is the little brother to fifteen-year-old Mikaela and big brother to one-year-old Ryan.  He's generally sweet and polite, and he's sooooo smart.  He doesn't always listen, he whines sometimes, and he still puts everything in his mouth.  He's a pretty normal kid (besides that "exceptionally cute"' thing), except that he is approximately 38 inches tall.  According to the CDC and the American Academy of Pediatrics, his height is hovering around the first percentile for his age. 

Right now, Jonah doesn't seem to care that he's shorter than everybody else.  When you ask him how he feels to be smaller than the other kids, he answers, "it feels smaller."  If you ask him if it feels good or bad, he says it feels okay.  He's the shortest one in his kindergarten class, he was the shortest one in his preschool class, and on his tee ball team.  He is also the shortest of his playdate group, despite being the oldest.  Jonah started kindergarten wearing 3T clothes and sitting in a car seat with a five-point-harness. He has been bullied by toddlers and little girls love to lead him around by the hand like he's a baby.  The problem is not that he's shorter than everybody else, it's how significantly shorter he is.

After a physical exam, blood tests and bone age xrays, Jonah was diagnosed with Idiopathic Short Stature (ISS) by a pediatric endocrinologist at Vanderbilt University Medical Center.  ISS is defined as having a height significantly shorter than most of the population with no known cause, a poor adult height prediction (under 5'4" for men) and no detectable cause.  One possible theory a nurse once told me is that Jonah may be producing sufficient growth hormone, but his body is rejecting it.  Up until last week, Jonah had been well below the curve on the growth chart but his rate of growth had been good.  At our last appointment, we found that his rate of growth has started to slow down.  

We have been tracking his growth for over a year, and have finally decided to begin treatment.  I am hoping to keep up with the process here so that we can share his journey with our friends and family, and maybe even others who have children with ISS.  Last week, our endocrinologist did a full blood panel to establish baseline measurements and will call us with results and information on submitting treatment options to our insurance company.  Keep your fingers crossed and we'll keep you posted!  Hopefully, we'll be inching up soon!