When I say our daughter is our little girl, I mean to say that she’s our little girl and she’s a little girl. She’s been following her own curve on the growth chart since she was born—way down at the bottom, around the 3rd percentile. Sometimes lower.
Her adult height has been predicted to be around the 5ft mark give or take. Our main concern when she was younger was always her weight. A bony baby who refuses to nurse or eat even the tiniest meal is not for the faint of heart.
We worked extremely hard to put weight on her (it’s still a struggle most days), only narrowly avoiding G-tube surgery. There was no secret bullet, only patience, persistence and possibly a deal with the devil. With our focus on all things high fat, nutrition packed, appropriate texture, etc. we didn’t worry much about her height. Until recently.
We were sent for a consultation with a pediatric endocrinologist upon the recommendation of our pediatric neurologist who had concerns about her overall growth.
After a bone age test—a simple x-ray of the growth plate in one hand—we learned that Avery’s growth measures at age four (she is eight). She then underwent growth hormone testing at Sick Kids Hospital to find out how much HGH she produces. Although her body makes growth hormone, it’s not nearly enough. Where most people produce a level 5, her production falls somewhere in the range of 0.2 – 3.5.
Tomorrow we visit Sick Kids once more to learn how to administer growth hormone injections. I’m not ashamed to admit that I’m afraid. I have a list of questions and concerns as long as my arm. Side-effects, cancer risks, other risks? And do the benefits outweigh those risks?
And did I mention the injections? INJECTIONS. Pardon my French but fark moi. I have to jab my baby in the abdomen every day for the better part of the next decade? The idea makes me sick.
What will I tell her tomorrow??
Avery has been in and out of the hospital often over the past eight years—sometimes to stay, but mostly just for specialist appointments. In the early days, she had no concept of pain and there was no fear. But since having blood drawn last year, and the I.V. they used to steadily administer the HGH during the recent testing, she has started questioning doctor’s visits. “Will it hurt mommy? No hurting right? Just talking, right?” Because mostly, it is just talking and it doesn’t hurt a bit.
Tomorrow might hurt. Or at least in the days to follow. And the thought of me doing the hurting? I can’t even… Mamas aren’t supposed to inflict pain on their children.
*I know there are worse things to deal with. This will be a mere blip in the history of our family. I know. And I also understand how fortunate we are to have this medical opportunity to make our daughter’s life better. This treatment can cost upwards of $40,000 per year making it unaffordable for so many. But since Avery has a solid diagnosis that indicates HGH will be beneficial, it is covered under our provincial health insurance. We are lucky. I know.