For the past 4 weeks, N has been on her "maintenance dose."
Huh?
That's the quantity of her allergens that she needs to consume daily. So, she no longer goes up in quantities or "updoses" every two weeks. For N and this trial, that means she is at 4,000mg combined or 2,000mg of egg and 2,000mg of almond. That's a lot more than the 2.5mg she reacted at in the spring when she went through her challenge (remember this?).
The drug (Xolair) takes three'ish months to wear off and she had her final shot eight weeks ago. About two weeks ago, I saw N really start to emerge from the fog brought on by the drug. Her energy and cognition returned. Based on how exhausted I am, She Is Back! In a few weeks I will probably be correcting myself and thinking, "Heh, now she is really back."
There have been some feelings. Coming down from the stress of trying (and sometimes failing) to keep a highly anaphylactic child safe for over 7 years leaves a few bruises. I wont speak for the scars she's been left with but we're working on that too.
There is a lot of re-training we need to do and although N can't eat anything she is allergic to outside of her daily dose, we have started having eggs and almonds in the house to normalize it. In 12 weeks it is very likely that she will be able to eat anything and everything, regardless of its ingredients. We realized it would be too odd to go from lockdown in the house to making scrambled eggs for breakfast. So, we are easing into it.
It's weird. It's really, really weird. I shake a little when I put almonds in my smoothie or throw an egg in my salad. Big brown eyes have glared at the other plates at the table. She's Ms. Resilient though so she takes a deep breath and we talk about how weird it is. How exciting it is. How scary it is. How amazing it is. How daunting it is. Then I drink my smoothie and act as normal as possible.
Doo-di-doo. Just drinking a smoothie that would have killed my child 6 months ago. Doo-di-doo.
And the pan I used to cook the egg? It's the cleanest pan in the northern hemisphere. I'm not totally *there* yet. Baby steps, people. Baby steps.
We will take a quick day trip to the clinic on Thursday
because her blood and skin need to make their contribution to the
trial. In and out of California in a day. In mid- January she'll do her big challenges. We'll see if the protocol has eliminated her allergic response entirely or if she can only tolerate her daily dose but still needs to avoid her allergens outside of that. The latter is worst case scenario and that is miles ahead of where we started so really, we can't go wrong. The world is so much safer for her than it was when we took a deep breath and jumped into this trial.
We'll take whatever we get. See you Thursday, California.
