Tuesday, September 29, 2009

sneaky little peanut

At just this moment I am struck by the little cliffs we stumble upon, almost by accident. We live our lives in meandering lines, honing our direction. Usually we are so focused on some place we imagine on the horizon, we don't see what is right in front of us. Or, as is sometimes the case, in the briefest moment an entire valley opens before us--- our toes curling over the edge of a cliff.

It happens so often that someone starts to write after they've stood at the edge of the precipice and then tumbled over, clutching rocks and sand and dirt in their quickly falling hands. We are left to imagine their life previous to these moments, the time they spent way up there in the flatland. Sometimes they talk about it. They speak of a time Before.

And in this case, I'm writing as we're jumping over this ridge, holding hands the three of us, hoping and praying that we'll land on our feet.

(I know we'll land on our feet.)

(This is not going to become an Allergy Blog.)

(Did you know they had those?)

(They do.)


I have the distinct pleasure to say that there was a time Before. And now there will be a time After.

Let's talk about the time In Between.

We went to Bean's follow-up appointment with her pediatrician yesterday morning. Alice was the only one who ate breakfast, and that was a waffle she clutched in her hands as we rode in the car. Chip and I didn't talk much. This is our M.O. in these situations: quiet, thinking, wondering. We focus on what needs to be done and let the silence fill in the empty spaces.

We arrived at the office before they had even turned on the lights. We sat in semi-darkness, watching the rest of the medical center wake for another Monday morning. They told us the Pediatrics receptionist was running late. Alice pointed excitedly to the fish --- FIIIII! FIIIII! IIIISH! She sat in a chair and munched bits of waffle. When the receptionist arrived, they opened the metal gate that covered the desk. Chip checked us in. I grabbed a few samples of Desitin from a basket. We killed time.

This is what I'm going to remember about that doctor's visit: sitting in the waiting area, wondering about Alice's life before her - what realities we would be discussing in the next hour that would become the realities of her life as she would understand it--- a life without a Before.

The doctor was really nice. She spoke about charts and allergy numbers - where an allergy resides on a scale of severity. She talked to us about allergy types and the reactions they usually entail. She didn't use a lot of words we don't already understand, though the context was different in most cases. I realized again that this is a process. The first conversation is not the end. It gives us a place to start, a place to plant our feet and breathe deeply: what do we need to know next.

We learned about the EpiPen and how to use it (I was so freakishly stressed, I gave myself a nice Epi-shaped bruise on my thigh). When I imagined trying to hold Alice down as I inject her with the pen, slowly counting to ten--- the image faded to a hazy golden color, sound and pictures slowed down. My brain was telling me: this is unimaginable.

But in the nuts and bolts of this thing I find solace. A plan. A systematic To Do list that gives me hope. And I am working on visualizing the steps for when, not if, she is exposed to peanuts.

Because it turns out that peanuts really are the Big Bad. The others need to be considered, to be worked through: the soy, the peas, the fish. But it's the peanuts that could attack her breathing, that could have her coughing and gasping for breath. This is what we know: her allergies aren't on the most severe end of the spectrum. They are moderate. At this point. And hopefully, as we watch her "numbers" (Ah! One of the pesky vocabulary words that I'm already adopting into speech.)--- things will stay steady, if not drop off altogether. It seems more likely that she'll lose her allergy to peas, soy, and fish - but in all likelihood, the peanut allergy is here to stay. About the "numbers" - the deal is this: There's this rating system, sort of, that gives a number between 0 to over 100, and then there is a scale that designates level of severity. So for instance, if Bean scored a .2 on allergic reaction to wheat (she didn't, but we're talking in abstracts right now), she would be considered to NOT be allergic to wheat. But if she scored, say, a 3.0, she'd have a moderate allergy. Then in a year or so, you test again - and hope that the numbers have decreased. So it goes. The typical reaction to soy is in the sinuses: runny noses and conjestion, what can turn in to chronic ear infections. So far, Alice's reaction to seafood is to vomit. We haven't yet seen a soft tissue or breathing reaction, but we're not going to wait for that to happen, either. The more a kid is exposed to the allergen, the more aggressive the reactions become.

So the key is containment and elimination. In the case of peanuts, we are ridding our household of the little buggers, as much as it pains me to say. Every granola bar, jar of peanut butter, and piece of chocolate is going to be excised from The Last Homely House. For the time being, and because we haven't yet tested her for a tree-nut allergy, we are going entirely nut free. At her 2-year appointment, when we check on the status of current allergies, we'll have her tested for tree nuts and a few other things.

As for soy... that's a little bit trickier. Soy is in E-V-E-R-Y-T-H-I-N-G. Nilla Wafers, Cheez-Its, fish crackers, graham crackers (oh the irony). All of them with soy. Come to find out, it is in most crackers and cookies, with the exception of Annie's. Honey Bunnies to my rescue, once again, man. Also: I'm going to teach myself to make my own graham crackers if it kills me. That should be an interesting blog post. I'm going to call them Whimsy Grahams.

I started dreaming of the homemade Whimsy Grahams as I wandered the ailses of Trader Joes yesterday afternoon, looking for suitable substitutes. As I read box after box, I thought of you guys. Thank you for your help yesterday.

There's so much more to say. I know there's more to say. But I'm exhausted. I want to dream of Whimsy Grahams and a happy smiling Alice, no EpiPen in sight.

But first, our family is going cliff diving.


Rose said...

Poor little Alice! That has to be frustrating!

As far as the graham crackers go... Christina (she used to be in our ward) posted a recipe that she uses to make her own graham crackers. You can give them a try!


artemisia said...

This is a huge change for you all! I am sure it is a relieve to have a bit of a plan, but it is so daunting.

I have no doubt you guys will create a new daily pattern around this and will forget your old way of doing things and eating.

Do you like to cook? Bake? This is a great excuse to try your hand at a bunch of homemade stuff. I have some recipes for homemade Bisquick type of stuff. I also have gluten- and dairy-free versions. Let me know if you are interested.

Hang in there.

Anonymous said...

Gah. I'm so far behind in reading and I feel like I've been out a week when it's only been a few days. Can't I leave you for just a tiny bit without you having to endure some major life altering event? You poor thing!

My take is that at least you found out the easy way and not the hard way. You're simply going to have to find a new normal and it's all Alice will ever know, so it will only be a hardship for you. Get ready for grocery shopping to take three times as long (ack with the reading). Oh - and you can come to my house for peanut M&Ms any day or night.

MWAH to you all on this new journey.

wandering nana said...

I know I have heard of people making their own graham crackers. Is there a web site for help for peanut allergies? I can tell you it will get better but it seems like a blanket statement and I know it doesn't make things better... no matter what, you will do what you need to and you will know what to do... Can I make you a parachute (remember "Hook")?

Anonymous said...

I've always been inspired by the way you and Chip handle adversity/change/hardship. You both are mthan you ore ready than you probably feel to handle this change in your lives. God knew you would be dealing with it, and He equipped you to handle it. So, here you go - jump off that cliff...you'll figure it out as you go, and like you've already heard, Alice won't know any different -- she will have her "normal" and you and Chip can go to your friends' houses to O.D. on Peanut M&M's :-) K8