All Adither

Allergy testing...again

Max's 9th annual allergist visit was today. Which means 1-2 hours of sitting in a small room waiting and watching welts the size of lima beans erupt up and down his forearms. It's always emotionally fraught.

This year was no different. He seems to have outgrown hazelnuts and pecans (!), but remains very reactive to peanuts, walnuts, cashews, pistachios, egg and dairy. (When is the poor kid going to get to try pizza? And ice cream?)

While I'm grateful to scratch two more nuts off our list (last year he 'outgrew' the almond allergy, but this year it returned with a weak positive), it's very difficult finding tree nuts that aren't cross contaminated by other tree nuts. Multiple nuts are generally processed on the same equipment. And the way labeling is done now, most companies will only say "This product was processed in a facility with tree nuts." Which is helpful not at all.

That said, things could be a whole lot worse. We're lucky that Max is healthy and happy overall and that we've managed to keep him safe so far.

Trying to kill time while waiting for the doctor to come in and once again say, "Well, we're not where we hoped to be..." Max and I took pictures of each other with my phone...

Constant motion

Perfect, oyster-translucent skin. Ribs that heave as you breathe. Your arms bent, legs taut, ready to run at me.

You all but puff steam from your nostrils. When you charge, you try to knock me over, but your eight-year-old body isn't substantial enough yet. You are angles and bones.

Your torso rams into mine and I purposely fall back. I know that in a few years you will be able to take me down, but for now you are still a small boy.

Earlier you looked at yourself in the bathroom mirror, arms up, studying your biceps. "Do I look strong?" you kept asking.

"Yes," I said, even though you just looked skinny and cute.

You are energy and exuberance embodied right now. You exhaust me. 

 

 

But you also give me so much more than you know.

Bring on the almonds

Maxwell had his annual food allergy testing today. These particular appointments used to push my sanity to its limit. Sitting in a tiny, hot room with two little kids for hours while Max was pricked and then we waited. To be blandly given the news that peanuts and tree nuts could kill him.

Now it's easier. I've been through it eight times. I know the drill. I know that peanuts, pistachios, cashews, and walnuts will be deemed lethal. I pretty much get that, as much as I want him to outgrow his dairy and egg allergies, this won't be the year. I don't expect much.

So, today, when he tested negative for almonds, Max and I grinned at each other and then we both burst into tears. He apologized for crying and buried his head in my lap. I didn't let myself think about all the high positives still ticked across his chart and enjoyed the moment. Almonds! Almond extract in cookies. Roasted almonds as a snack and new protein source. Granola bars with almonds. Almond milk.

"We'll start with a sliver," I said. "Tomorrow. During daylight."

He nodded and we high-fived.

What a sweet development for us.

The necklace

The sweetest of sweet things today...

For Christmas, Fruit Bat got a rock polisher. I was the genius who bought it for him, thinking, Oh, it'll take, like, a day to shine those pebbles up. He'll love this!

He did love it, yes, but the polishing cycle takes closer to three weeks. If you're lucky. So, for the past 21 days, give or take, we've had a rocks tumbling around a plastic cylinder in our garage. I tried not to think about the power we were using, or hear the constant grind as a slurry ground stones to glassy, little beads.

Finally, yesterday, it finished. We dumped out the rocks and Fruit Bat set right to work making jewelry. Necklaces, rings and keychains mostly.

He tucked one of the freshly minted necklaces into his backpack. When I picked he and his friend Anna up after school today, he handed her the necklace and said, "I made this for you."

"Thanks!" she said, sincerely delighted. I helped tie the cord around her neck.

We all trounced to my car and I thought, How beautiful. How innocent. In three or four years, maybe less, handing a necklace to a girl will be fraught. 

But for now, it is just a small gesture of friendship.

Sentimental

I'm not a person who generally mourns her children passing from one stage to the next. I welcome new phases and ages.

Tomorrow is Fruit Bat's last day of Kindergarten. On his first day, back in September, I did find myself the slightest bit weepy. But I didn't expect much emotion to come at the end.

Then, tonight, I pulled these from his backpack. 

The box of crayons he's used (and used and used) all year. 

And my throat closed in on itself.

My boy

Another tooth...gone.

Kindergarten...almost over.

Empathy...maybe, possibly developing.

Reading...melts my heart into puddles.

Beatboxing...getting good.

Hiking...loves it more than anything...takes after his dad.

My oldest kid...lucky mom.

Will I ever shut the hell up about how badly Food Allergies Blow?

I know I keep going on about food allergies lately. Kindergarten is fast approaching and the fear of anaphylaxsis is pulling on me like heavy stones tied to the corners of my clothing.

To make matters worse, I had a "talk" with Fruit Bat last night just as he was about to go to sleep.

I wanted to impress upon him the importance that, if his body felt odd or tingly or itchy in any way while he was at school that he should tell a grownup. If not he might get very sick. So sick that he could die.

I have never used this word, DIE, in reference to his food allergies before. Not with him. And I probably shouldn't have done it this time. 

My concerns that, with the onset of hives or breathing issues, he'd dash into the school's boiler room to huddle in a hot, steamy corner and, you know, DIE, got the best of me.

He's generally good about his allergies. He's cautious and thoughtful. He asks questions and grasps it as well as a five-year-old could. He most likely did NOT need a reminder from me that, if he ingested a peanut his bodily systems could shut down.

But I handed it to him on a silver platter anyway. Here you go son, Something really BIG to worry about for the rest of your life.

After I said it, he looked at me, stunned. He said, "I could die? I really could?"

He seemed okay for a few minutes.

And then he started sobbing. 

He clung to me and wept and I, usually dry-eyed lately in the face of our food allergy reality, somewhat used to the fear and roiling emotions of having a child with such a hyperactive immune system, was instantly teary and regretful. 

I tried simultaneously to validate his realization and assure him that lots of people are around to help keep him safe. That he's smart and careful and that he'll be fine.

I told him I'd stay with him while he fell asleep.

I laid on the floor next to his bed and watched his expression and his eyes, filled with worry and understanding...until they closed and his features relaxed.

I'm wondering how he'll feel this morning when he wakes up. What he'll remember from our talk. How he'll do when it comes back to him in bits and pieces while he plays with his cousins, who are visiting, and runs and dances and laughs through the otherwise normal life that we've constructed.

*I was looking for an image of an exploding peanut, or a peanut with a gun held to its temple or something, to include with this post. But I found this instead. I think I need to take some.*

The post where I get all pissed off on Food Allergy's ass

When we first had Fruit Bat tested for food allergies, he was five months old. He had eczema from head to toe and I was desperate to figure out the cause.

He tested positive for dairy, egg, tree nuts and peanuts. My initial reaction was relief. I could cut those foods from my diet (I was still nursing him exclusively) and maybe his skin that was red, angry sandpaper would soften, would stop itching.

And the full body rash did ease quite a bit.

Still, I didn't fully understand food allergies. I thought I could have a piece of peanut butter pie here, a milkshake there and it wouldn't be any big deal.

When we had him retested at age one, his wheals (which are the hives the allergists measure to get an idea of how allergic someone might be to a particular substance) were huge.

Still, I didn't get it. 

I'd occasionally give him cheese and ply him with baked goods containing egg and dairy. It wasn't until hives started popping out on his arms and legs that I realized how these foods were taxing his immune system.

At three he was tested again. This time the allergist chose to do a blood draw and have the lab perform a CAP RAST  so we could get actual numbers rather than just measuring wheals. 

His numbers for nuts, egg and dairy were high. So high. I wept. I gnashed. I was jittery. I had to take a Xanax that day.

Last year, his numbers for egg and dairy started to abate a bit. And I made the mistake of hoping. Hoping that he'd someday be able to eat real pizza, Ben and Jerry's, omelets, frozen custard. Hoping that we wouldn't have to bring our own cupcake to birthday parties and that he wouldn't have to feel left out when other kids got treats he couldn't have.

I've always known that the Peanuts are probably a lifelong allergy. His peanut numbers are astronomical and, honestly, it is peanuts that I fear will someday put him in the ER (Hopefully not worse. Oh, please, hopefully not worse.).

But the eggs and dairy. They've never been the thugs to me that Peanuts are. They're the delinquents that swagger several paces back from the thug. They sneer and threaten, but, as long as we don't make eye contact, they will never actually jump us.

This morning, though, I was informed that Fruit Bat's numbers for eggs tripled and for dairy doubled. This is after years of reading labels, avoiding restaurants, bakeries and ice cream shops, of never giving him anything homemade by someone I didn't really, really trust. After years of believing that if we strictly avoided eggs and dairy he had a great chance of outgrowing his allergies to them.

So, with no exposure, why would his numbers have gone up?

I'm frustrated. I'm so fucking frustrated. And I'm scared. I'm sending Fruit Bat off to public, all day Kindergarten in a month. The school is close to our house. He'll be with grown ups who care about him, but who probably understand food allergies about as well as I did when I was feeding him nibbles of Cheddar and spoonfuls of yogurt.

The delinquent eggs and dairy are getting feistier, their glares more menacing.

Usually I'm able to accept our reality of little to no eating out, of teaching Fruit Bat what peanuts look like and to stay far, far away from the bastards, of a certain amount of deprivation.

I'm able to celebrate when I find a new soy ice cream treat he can indulge in and dance a little jig when a friend bakes safe cookies for him to enjoy with his friends.

But today. Today I'm a little bummed. I don't feel like I need a Xanax this year. I've been around this track quite a few times.

I just want my boy to be able to enjoy life. To not have to fear something as pervasive as FOOD, for God's sake. I want him to be able to eat cake. 

Any damn cake he wants.

Five years old

It’s summer and it seems that a lot of blogging folks are on vacation. I’ve been reading scads of Guest Posts which 1) Is a good way to find out about new blogs you may want to take a gander at, but 2) Is annoying when you’re expecting to be entertained by the regular writer of a certain site.

Despite my irritation with this technique, I need a break. And my five-year-old son, Fruit Bat, shares many of my sensibilities (like being self-centered and thinking about nothing but candy). I've let him temporarily take the reigns of All Adither.

asldifjasdofina;voasidnas;ds

sdfoisjdf lmnsdf eip'a.

Okay, I'm clearly gonna have to translate. 

Here he is:

Can we go to the Bob-the-Builder site, Mom? Can we color those pictures on that site? Go to the Bob-the-Builder site, Mom. C'mon, pleeease. Or Dragon Tales. Go to the Dragon Tales site now.

Did you see me riding my bike yesterday, Mom? Did you see me? I went, like, a really long time without my training wheels. I'm so much better than I was. I'm awesome. Kitty Cat, you should take the training wheels off your bike. It's easy. My balance is so much better. Did you see me, Mom? I went for that really long time pedaling. It was awesome.

Why do you always have your postcards out? I put mine in my memory box. Mom, I put mine in my memory box. You know, the picture of where we stayed in Hawaii and the black sand beach. I like to play I Spy with them. Especially the Maui picture one. That's a good one. I like the I Spy things with my Maui picture. Cuz it's really tricky. Can we go get Laffy Taffy?

Why are you always on your computer mom? What's that a picture of? What's the dancing lady? An ad? What's an ad? Mom? What does it do, an ad? Is it, like, part of the Bob the Builder site? What is insurance? What do you mean, mom? Can we go to the Bob-the-Builder site now? I wanna go to the Dragon Tales site, that game with Zach and Wheezy. Can we go, now? Can we go? Let me click, mom. I'll click.

Thanks, Fruit Bat! Now everyone has an accurate portrayal of 85% of my day.

What's accurate, mom? What's accurate mean? It has the word Cure in it. Is it a Cure? Is it, mom? Mom, is it a cure? It has the word Ate in it too. Are you talking about eating mom? Like Laffy Taffy. Can we go get Laffy Taffy?

Thank you, mom with the wipes

Last week, the day before we left for Michigan, we met some good friends at a playground for lunch. The kids played. Ate a little. Played some more.

Near us was a small group of parents, two or three, and their children. These children ate peanut butter sandwiches.

For those of you who've been reading All Adither for longer than a month, or who've read my About page, know that I don't have many nice things to say about peanut butter sandwiches.

Yes, I know they're portable. I know they're the favored protein source for much of the under-10 set.

But, quite simply, they make my chest hurt.

Watching a child weaving around the playground with a smeary peanut butter sandwich and knowing that Fruit Bat will, moments later, be shooting down that same slide or grabbing that same merry-go-round, makes my brain spin like a top, until it is a squealing, eardrum oozing shriek, reverberating through my entire body.

I have to be on constant alert. We will not avoid playgrounds, or any other public venue because of the risk of Fruit Bat contacting peanut products. We have to live, to get out there.

And so, when one of the moms of the kids eating peanut butter sandwiches made sure to wipe down her children before they jumped on the swings or leapt into the sandbox, and exclaimed to another of the parents that she was "paranoid" and didn't want to be responsible for any peanut allergic kids' reaction, my shoulders relaxed. My stomach unclenched and I was able to enjoy watching my kids be kids at the park.

I wanted to thank her. But I couldn't, despite my best efforts, find a good time to edge toward her and verbalize my appreciation.

So, I'm saying it here. For any of you who've considered other kids' needs, even when they're foreign to your family's own ways of doing things, thank you.

Thank you so much.