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!