Garrett is fifteen and a half now. He is the kindness soul I’ve met in this life. He’s always loved music and rhythm, but he has become an incredible drummer and is playing with our church’s youth worahip band every Wednesday and Sundays and taking lessons from an extremely talented musician and worship leader who God placed so beautifully along Garrett’s path. Thank you, Jason Liest, and thanks me to Curtis, our friend who literally “found” Jason at a hard sale!
Where to begin? Let’s start with the good. The good is that Garrett is thriving at school, in drum lessons and playing, and loves to drive the UTV and his deck-less lawn mower. He still adores his dog, Sammy! He is sweet...to others.
While he is kind to others and even says he wants to be a caregiver someday, he is not kind to himself. The past year has been plagued with nothing short of self-abuse. He hits himself in the face and loses his cool with himself screaming profanities at himself about things he isn’t even doing. Recently his psychiatrist has determined he has Obsessive. Compulsive Disorder. The obsession is him thinking that he may make a mistake or being frustrated when he has to be reminded to do something or cannot keep an electronic charged to 100%. The compulsive is these terrible outbursts that are totally aimed at himself.
In the months of working to discover the answers to more “whys,” we were referred to endocrinology as we were becoming concerned we were not seeing signs of puberty and were seeing these behaviors escalate. His pediatrician was concerned with his slowing of growth, only one inch of height in the past year. Endocrinology ran some bloodwork and it showed very little hormone levels, so stimulation testing was ordered, three types. Garrett was very brave as we checked into a children’s chemo and infusion center and spent the day with an IV and two infusion drugs and two injections were administered throughout the day. He experienced about ten minutes of throwing up, but otherwise it was uneventful. About a week later I received a message in the My Chart app from his endocrinologist letting us know the results are “reassuring,” so we need to follow up with him in six months. While the news that the test results should be relieving to us, it was not because we hoped that Garrett being “stuck” in that pre-puberty state where most of us wanted to just vanish from the planet, that wasn’t the case!
Then yesterday I received another My Chart message explaining that two of the three stim test results were normal, his third was in fact not! Garrett is not making enough Growth Hormone. Next step is an MRI with and without contrast followed by two years of growth hormone replacement therapy which is an injection daily.
We now work to ensure our mitochondrial specialist, Dr. Russell Saneto, is in communication with the endocrinologist regarding the new information and plan.
My heart breaks for Garrett. He has a g-tube, an appendix parody with a chait tube (I need to blog about that to share that addition!) that stays in his belly button, he hates shots and needles, and this is daily. He will adapt, but goodness I wish this kiddo would get a break!
God only knows the why and the opportunities Garrett may have to help others, and we remind ourselves of this almost daily. Moms and dads, stay strong. Listen to your gut feelings, and know you’re not alone!
