Growing in Numbers
Part of Emma’s diagnosis of Septo Optic Dysplasia (SOD) is that she is hormone deficient. So we replace the hormones her body doesn’t make, or doesn’t make enough of. She gets cortisol replaced, thyroid, and growth hormone (hGh). hGh is, of course, the drug that’s been in the media for being used by many athletes to “enhance” their performance. In actuality, hGh just really helps with recovery. Period. With Emma, hGh doesn’t just help with linear growth. It helps with overall growth of her body; organs, tissues, bones, etc. The insides of the insides. So it’s very important she receives her shot every night. When I first found out we had to give her a shot every. single. night. I was mortified. I actually couldn’t give her the shot until about 1 month post diagnosis. I just couldn’t bring myself to do it. We’d have to hold her down. I’m not sure how long the holding-down part lasted, but now she thinks nothing of it. In fact, she rolls up her sleeve and sticks out her arm. Because, you know, she’s a champ.
So anyway, on Tuesday, Emma’s “specialty pharmacy” called requesting I refill her growth hormone. It is a nice courtesy that they call me to remind me it’s time for new hGh. I can’t complain there. So I chatted with them, giving them all of the same information they’ve received for years. Nothing has changed, not even the dosage this month. Anyway, whatever. It’s protocol. I get it.
In 2 days, the shipment arrives. A huge box. Containing medicine. See it? No? Yeah, the boxes are small. The vials even smaller.
The vial in each box? They are 10 mg each. That equals 25 days worth of medication.
They’re stored in the fridge. At 36* F. Next to the 5 Hour Energy and the milk.
It’s stored next to the milk in a handy (and secure) carrying case. That case goes with us anytime we go somewhere overnight. Which means we need some good ice packs!
The needles? Those are 30 gauge and 8 mm long. They don’t hurt…I don’t think. I’m too chicken to try it. Pathetic, no?
The bill? Yeah…that’s the doozy. Keep in mind…this total is for 25 days of medication. Not even one full month.
Still there? All I can say is Thank God for Medical Insurance. Period.
I think this is the thing that people simply cannot fathom about disab. The COST to treat (not cure) the symptoms.
There have been so many time I just wanted to bawl my eyes (and heart) out. How in the world am I supposed to take care of my child (which includes getting educated – the equiv. of two Master’s degrees) AND work a part or full time job to supplement my husband’s two or three jobs, just to get by.
laugh
So there is yet another continuum, which only the families of those with disab. (or maybe abuse) can really comprehend:
thriving
coping
treading water
existing
drowning
whatever is beyond that . . .
It does take a village (and an additional educated one in the case of SpNeeds kiddos).
Thanks for writing what I can’t even begin to think about.
It’s a struggle, isn’t it. Thank God for the communities that give us the support! I appreciate your support and comments!
I can’t believe all that you have to juggle, Jess. Soo many things to think of, keep track of, remember… You are an excpetional mother. And, yes, THANK GOD for medical insurance.