Two thumbs up for Keira. Dr. Effinger told us today at Clinic that she's done taking her daily medication. Yay! It's been almost 3 1/2 years since Keira first started taking steroids to help suppress her immune system. In October, Keira took her last dose of Dexamethasone, which was a potent immunosuppressive steroid targeted at OMS. As odd as it may seem, the fact that she was on such potent steroids for such a long time meant that her body down-regulated it's own natural steroid production. As a result, she's also been on a supplemental steroid (hydrocortisone) as well. As we removed the Dexamethasone, we had to ensure that her body would start producing its own natural steroid at its normal levels. And today was the day that Dr. E felt comfortable letting Keira's body do its job!
We are so proud of our little girl!
So much of this OMS journey is over her head, but she just trusts that we know what is best for her. That's a lot of pressure on us as her parents but today we couldn't be happier to be taking this step forward.
Talking about it with Naveen tonight, we realized that Keira's reaction was more subdued than you would think... for her it seems like going off her medication was a non-event. I guess it has just been a part of her daily routine for so long that it doesn't seem like such a big deal to her.
When I asked Keira what she'd like for dinner... anything she wanted... she requested chicken nuggets from Old McDonald. Not the healthiest option but easy enough to accommodate. :)
Keira will need to go in for some blood work in about six weeks to check her steroid levels. It will be important to see if her remaining adrenal gland has taken over the production of the steroids her body needs. Since she has to get a poke, the doctors will also check a few other things to get a baseline on how she's doing in general.
Thank you for all the love, prayers and positive thoughts! We know that they help!