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!!
