Sometimes life gets crazy and some stuff has to take a backseat to surviving. For our family, the past year or so has been about surviving and Jonah's treatment was one of the things that was put on hold. His rate of growth has slowed way down again and he has dropped back down from the 12th percentile to the 7th. He has grown in a million other ways this year, however. Jonah has "graduated" out of Special Ed services at school, attended Robotics Camp, has made his first best friend, joined the Coding Club and is learning to play the trombone. His teacher says he is doing very well both academically and socially. His size appears to be a non-issue for him at the moment and he has definitely enjoyed taking a break from his nightly injections.
Awwwwww!! So cute!
What were we talking about?
Oh, yeah...
Since my last post, we moved from Tennessee to Maryland and have been transitioning out of the ministry. A few months ago, we transferred Jonah's records from Vanderbilt Children's Hospital to a pediatric endocrinologist at Children's National Medical Center in Washington DC. She went through his records and was surprised to find that he never did a growth hormone stimulation test. We did lots of other testing, but not a STIM test! She ordered a STIM test for one day during Spring Break, and Jonah and I got up while it was still dark to get down to the children's hospital by 7:30am.
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| Children's National Medical Center |
Let me first say that I was super unhappy about this whole thing. Jonah has had a sedated MRI of his pituitary, multiple blood tests per year, regular bone age scans and check-ups with the endocrinologist every four months. I was positive that this new test, which involved an intramuscular injection, an IV, and four hours of not being able to get out of bed to pee, would yield little new information. It turned out to be a game changer!
We were taken back to a small room around 8am and a nurse started an IV on a very nervous Jonah who was concentrating on looking brave and fighting tears. The nurse drew a baseline blood sample and then administered an intramuscular injection of Glucagon, which is a hormone that raises the blood sugar and makes your child forget that he's supposed to be looking brave. If you are preparing for this test with your own child, know that when the nurse says that this shot may cause vomiting, what she means is that this shot ABSOLUTELY WILL cause vomiting. Blood was drawn from the IV every half hour and another medicine, called Arginine, was administered about an hour and a half into the test. Arginine is a an amino acid that's supposed to stimulate the secretion of growth hormones. Supposed to. The whole ordeal took about four hours and caused drowsiness, nausea, vomiting, blood sugar crashes and super low blood pressure. Let me tell you, it was awesome. At least we had How To Train Your Dragon on Netflix, the soundtrack to Into the Woods on my phone, and various Percy Jackson books. 
SPEAKING OF PERCY JACKSON!!!! The highlight of our otherwise long and stressful morning was the three hours that we were totally Twitter-famous! Jonah is a completely obsessive Rick Riordan fan. He has read all of the Percy Jackson books, the Kane Chronicles, the Heroes of Olympus Series, and is eagerly awaiting the second Magnus Chase book and the release of the new Trials of Apollo series. He has read all of the supplemental books about Greek gods and heroes over and over. He brought Riordan's giant Book of Greek Heroes with him for the test and spent a couple hours either giggling to himself or reading the funny parts out loud to the nurse and me. I took a picture of him reading and tweeted it Rick Riordan who almost immediately retweeted it. 
You guys, my phone went crazy for like an hour. Our tweet has been retweeted sixty-something times and liked 510 times. Rick Riordan's tweet of our tweet (I've never used the word "tweet" this many times in my whole life) has been liked 202 times and retweeted about thirty. My phone buzzed every time either of them were liked or shared. It was madness, but Jonah was psyched to have made contact with his favorite person on the planet.
Our new endocrinologist called yesterday with results. Four years after being diagnosed with ISS, we received an official diagnosis of Growth Hormone Deficiency. The endocrine nurse will be working this week on getting all of our stuff resubmitted to our insurance in an effort to appeal their rejection of Jonah's treatment. The doctor expects that it will be accepted this time around in light of this new information.
I know that you lost almost two full years of sleep awaiting this post. :) I promise not to go this long again, especially since there will soon be exciting updates about insurance and beginning treatments again. I started writing to keep a record of this journey for Jonah to see when he gets older, but I have gotten lots of messages from other growth disorder parents who are searching the internet for stories from other families. So, share your story!!!!
