You may have read on my Facebook page that we’ve entered a new chapter of struggles for our little knight. Two weeks ago, he started having a new type of seizure that we’d been warned about since the beginning. “Don’t worry too much,” they said, “They’re pretty rare.” Oliver can’t help himself but to rise to that challenge. So we found ourselves checked into the hotel a la children’s hospital for an unexpected three-day stay as we learned how to give the injections that he would need to attempt to control them. The other reason we had to stay is that the hospital will not allow us to leave with any amount of the drug and we have to have confirmation that it was delivered to the designated address to an actual person so that we could administer the evening dose. Each vial costs $28,000 and they send us two at a time.
Oliver’s current daily medication regimen (most of them twice a day)
Injections of steroids twice daily has left my smiley, relaxed, snuggly boy so angry, stiff and unhappy. But yesterday we got to cut that dose to ONCE per day and will begin tapering off the quantity every week from here. And we’ve seen improvement in his mood even in this first two days. I had not seen one silly smile since he started. And I’ve been blessed with about three today, including this one, which he insisted on hiding behind his paci. (Apologies for the hideous quality but beggars can’t be choosers.)
And let me tell you, while no parent should have to give their baby injections, the lack of smiles is worse. Oliver has a lot of challenges, but he’s happy. I pray this is always his lot in life. I’m not sure I wouldn’t take a few seizures with a happy boy than an unhappy drugged, seizure-free one.
I won’t lie – it has been a crappy two weeks. And there are four more to go. And we don’t know if it will work 100%. And we on top of a PCP, pediatric neurologist, gastroenterologist, interventionist and physical therapist, we’ve now been referred to a cardiologist to monitor his heart and blood pressure through the steroid use. But there are high points – like the family and friends that have rallied to watch Oliver one day at a time since his immune system is down and he can’t be at daycare. And the anonymous care package of goodies for me and Margot I got in the mail yesterday from another mom who said she’s praying for me. Thank you. I need it. And if each of you reading has it in you to join her these next few weeks, I’d be much obliged as well.