Grin and Bear It

Malia has been pretty stoic about all the whole food allergy thing. When she asks if we can go out to lunch and I say no and tell her why, she pretty much says, "Ok," and leaves it at that. However, she cried today when I told her she couldn’t have the Sprouts gummy bears out of the bulk bins any more. I don’t blame her. They are the best gummy bears.

The Musings of a Food Allergy Mom

Today was Malia’s appointment with the allergist. When we walked in, the nurse’s first comment was that she was seeing Matthew’s little sister. Yup. Our kid is the one who is so allergic that even though he is only in there once a year (a different nurse has done his last three food challenges), they all know who he is. Anyway, Malia had been to several appointments with Matthew and has even been to his food challenges since he likes to have both Kev and I there for those, so she was pretty relaxed about the whole thing. She wasn’t a fan of the skin prick testing, but no one is unless they are just a little bit crazy, but all she did was flinch and say, “Ow.”

In addition to peanuts, we tested for cashews, pistachios, peas (because Matthew is allergic to those), almonds (because that is one of the few nuts Matthew can eat) and sunflower and sesame seeds because it seemed prudent. Peanut is the only one that Malia tested positive for, but because we don’t eat peas around here I don’t think Malia has ever had them and although we eat almonds I don’t bake with them much (even the extract I have is imitation because that is what I bought and stored before Matthew did that food challenge) so I’m not even sure that she’s eaten those. Our doctor wants her eating almonds in some form at least three times a week to help prevent her from becoming sensitive to them so once I have a chance to catch my breath, I’ll need to feed her some stuff and watch and hope all goes well.

As for the peanut, her reaction was severe enough that our doc recommends complete avoidance including avoiding items that have a risk of being cross contaminated. So for those who’ve never had to do this, for skin prick testing they do two controls-water and histamine (the chemical in the body that causes the swelling, itching, etc. of an allergic reaction). They start the test then usually wait 10-20 minutes, check the skin, and wait 10-20 more minutes. The size of the welt on the skin gives a visual of how allergic a person is. Most of Matthew’s welts have looked like mosquito bites (except milk-that one spread all over his back in multiple hives and the few times we’ve actually done skin testing for peanuts the welts were pretty big). In cases where there is definitely a reaction, they won’t usually wait for that long. They only watched Malia for ten minutes before deciding she was definitely allergic.

The top welt is the one caused by the pure histamine. The lower one is the welt caused by peanuts after only ten minutes.

So I am now the mother of two EpiPen carrying food allergy kids. As a food allergy mom, one of the things that I’ve struggled with off and on over the years is what I could have done to prevent the allergies from happening. But the long and short of it is absolutely nothing. No one is really sure why food allergies even occur. There are many and varied theories on why they happen and the suggestions on how to avoid them are just as numerous and contradictory. Some people say eating nuts during pregnancy with bring on an allergy while others say to give in those peanut butter cravings. Eating peanut butter while nursing is the thing others tell you to avoid while there are those that says it doesn’t matter. Introducing nuts to children early as opposed to late both have supporters. In spite of all that, it can be hard not to look back and think, “If only I had…” In reality, all I can do is look forward and do everything I can to help my kids have as normal a life as possible while teaching them how to stay safe.

And as far as the staying safe part goes, Malia is figuring things out much faster than Kev and I expected. Feeling as miserable and scared as she did definitely made a big impression, but it’s not just that. She has been watching Matthew her entire life and he is so careful and so responsible that just by watching, she already knows a lot about what to do. He has unknowingly become her role model and she is mimicking him as she figures this out. In fact, I showed her a lot of cute pouches and bags for her EpiPens (flowers, pink, girly, all the stuff she loves!) and she looked on all of them with disdain. She wants one like Matthew’s. And I’m okay with that. She’s a lucky girl that she has a big brother who can show her the way.

There is an Upside to All This...

Matthew's teacher has a sports theme for her classroom, which Matthew loves, of course. One of the things she does to go along with her theme is to give each child a week when they are the MVP (just in case you are even more sports illiterate than me, that stands for Most Valuable Player). She has an activity each day of the week that is fun or puts that child in the spotlight. It is great fun and the kids all look forward to their week.

This week is Matthew's MVP week and today Malia and I got to eat lunch with him again. There were no special tables this time, just the opportunity to eat lunch with Matthew in the cafeteria. They have one long table set aside for the kids with nut allergies and that is where Matthew sits. Each kid is allowed to invite one friend to sit at the nut free table with them and by the time we were seated and unpacking our lunches, the table was completely crammed full of kids. It was so full that the lunch room attendant came over to send the non-allergy kids back to the other tables. The problem was, they were all nut allergy kids. So there we were, packed in like sardines, when I looked up and down the table and realized that Malia and I were the only girls. And then I remembered that in fact, boys are more likely to be allergic to nuts than girls are.

About ten years from now, Malia is really going to like those odds.

3 Squared

Matthew's ninth birthday was this past Tuesday and we have been celebrating all week. On Monday none of the kids had school and Kev had no work so we gave Matthew his presents then so he would have time to play with them. He got a Lego monster truck and a lighted football from Kev and I. Daniel gave him a light saber, blue of course. Nathan gave him a baseball themed Spot It game. Malia gave him a small remote control monster truck of Gravedigger, his favorite from last month's Monster Truck Jam. We didn't even think about taking pictures. I blame it in the migraine I had and the slowly spinning world I was living in on Monday.

Tuesday was Matthew's real birthday. Kev brought him home some ginormous balloons. They were big enough that Nathan's first response was, "Holy cow!" The comment was actually quite appropriate seeing as the biggest one was a cow. The rest were footballs. We ate Matthew's favorite meal for dinner (stove top lasagne) and he got to eat off our "you are special today" plate. Again, no pictures.

On Wednesday, Malia and I got to eat lunch with Matthew at the school. Once a month, our PTA has "birthday table" during lunch. On that day in their birthday month, the kids get to invite their family to eat lunch with them at the birthday tables. There are tablecloths and balloons on the tables, the parents can bring in whatever kind of food their kid likes and the PTA has a small present for each kid (this year it was a crazy straw). It is lots of fun! Sorry, still no pictures

On Friday, Matthew had his friend party. He really wanted to go to Airborne, a trampoline arena that is popular with the kids in our area, and we told him he could do that but he could only invite four friends. He actually only wanted to invite three and one couldn't come so they were a small group. We had cupcakes and gelato before they went to the arena and they had a great time. And not that you are surprised, but no pictures.

Yesterday Matthew got his presents from Kev's parents. They gave him a couple of fun t-shirts and a frisbee toss game (think frisbee golf with mini frisbees). Nathan was actually super excited about that one because he is in P.E. this semester and is in the midst of a frisbee unit. And that means Matthew has someone to play with! Yes, I'm a slacker mom who once again has no pictures.

This evening we sang to Matthew and shared his big cake with my family. He asked for a coconut sheet cake (he is really loving the coconut since his food challenge last year okayed it for him) with a big Y on it. Yup, he's still a BYU fan. And guess what's? Pictures!!

Matthew was super excited about his cake. He was all primed for a perfect candle blow...and didn't blow out even one.

On his second try...

 ...he got all but one.

The third time around...

...he totally missed that last candle again.

 Finally, his cousin Drew gave him a helping hand puff...

...and finally he was done!

I sure hope he didn't wish for something important. ;-)

Last year, my sister Rachael did some super fun birthday interviews with her kids. I loved the idea so I put together a questionnaire of my very own. I thought it would be fun to see the kiddos' handwriting so I had Matthew fill his out on Tuesday.

I'm so glad Matthew is a part of our family. Yes, he knows how to push every one of my buttons and he does so regularly, but we love him anyway and life would definitely be more boring without him!

Slam Dunk!

Matthew has really taken to this whole guest blogger gig. He went to another basketball game last night and the first thing he asked when he got home was if he could blog about it. I'm happy to oblige. :-) So once again, here's Matthew:

On Saturday we went to a basketball game and it was BYU going agenst San Diegeo. At the end of the first half Malia was SO bored. At half time even I got bored. In the first half San Diegeo only scored 12 points. At the end of the game, the final score was 91 to 33. At the end we got to meet Cosmo at the “Y” bell. We got a picture with Cosmo. I got three high fives! :-)

I Don’t Know Whether to Laugh or Cry

I can hear Malia playing in the other room and she is saying that Jolly, her stuffed puppy, is allergic to peas, milk and peanuts. Apparently this weekend had already left its mark on her.

It’s My Blog and I’ll Whine If I Want To

Over the last few days as we have let people know about Malia’s allergic reaction over the weekend, the overwhelming response has been, “Malia is allergic to peanuts? Oh, well. You already have Matthew so it’s no big deal.” To me, that is like saying, “You were in a car accident? Oh, well. Your brother was in a car accident last year so it’s no big deal.” I’ve had only a few people who actually responded with some of the sorrow that I actually feel. And of course, that is one of the reasons I love those people.

Let me assure you that this is a big deal to us. Yes, we already have Matthew and I’m so glad we knew what we were dealing with and knew what to do. Yes, Malia will have a brother who totally understands what she is dealing with and in emotional moments will probably hit her with, “At least you’re only allergic to peanuts! I’ve got it way worse than you!” Yes, I know how to work around that at home and have years of practice reading labels to make sure things are safe. Yes, I’m very familiar with all the forms and hoops that having an allergy kid at school entails. So yes, in so many ways this is not a big deal for us.

However, this is a huge deal for Malia. This is one of those life changing moments when things will never be just the same as they were before. She is young enough that she doesn’t yet understand just how much things will need to change. She’s already had some sad moments. She can’t eat M&M’s anymore. We don’t feel comfortable feeding her one of the Japanese food items we eat frequently because it is manufactured outside of the U.S. where the food labeling laws are not the same. She actually laid her head down on Kev’s arm and cried over that one. We had to swap out the treats her primary teachers gave her for Valentine’s Day because they were not safe. And unfortunately, this is just the beginning.

To put it concisely, the food allergy mama in me needs some time to grieve. Yes, the grief will lessen over time and we’ll make the best of things like we always do, but part of being a food allergy mom is always having a bit of sorrow in my heart that I can’t change things for my little ones.

The Next Bump in My Road

Being a parent is hard. One of the things that has been hardest for me has been watching my children go through hard things when there is absolutely nothing I can do about it. I want to be able to fix everything and I know I can’t. Even if I could, I hope I would be wise enough to understand that those difficulties and trials are necessary to help us become the people the Lord wants us to be. But the desire to spare my children from struggles is still there.

Yesterday held another of those struggles that I wish I could change.

Here’s the short version: last night Malia was in the emergency room having an allergic reaction to peanuts. She is fine, but it was not our happiest night ever.

Here’s the long version: Due to Matthew’s food allergies, we’ve been watchful with Malia ever since she was newborn. Luckily, she seemed to have no problems. By the time she was three, the only thing we hadn’t fed her was nuts. Last summer she had a few peanut butter M&M’s by mistake. We knew that any reaction she was going to have would not be the first time she ate peanuts, but the second or third time so we have been on the watch. I’ve known that we needed to know what would happen before she went to kindergarten, but it’s a scary thing and I’ve been avoiding it.

Last night avoidance time was over. Malia had a stash of candy from her Valentine’s party at school and after dinner she started eating one of those one bite Snickers bars. I didn’t realize what she was eating until she told me she didn’t like it and said her mouth hurt and she started coughing. My heart sank. Honestly, what I felt was a bit of dread.

We’re experienced food allergy parents here, so we decided to watch for a while to see how things would go. If things had gotten too scary, we knew we had Matthew’s Epipens and our allergist’s permission to use them on another child. An hour and a half later, the coughing had worsened and Malia had lots of mucus in her throat. She threw up and felt better for a little bit, then the coughing worsened and she threw up again. She started scratching at her ear and we noticed that it was red and a bit swollen. That was when we decided it was time to take her to the Instacare. Kev and Nathan took her and I stayed home and talked Matthew down. He was freaking out and needed some reassurance that everything would be ok.

At the Instacare, the doc said that technically she was in anaphylaxis and so per clinic policy, she was transferred to the emergency room. The doc there felt like epinephrine was overkill (which made me feel better about our wait and watch decision) but they loaded her up with a couple of other things. Through it all, Malia was a trooper. Kev said she only cried once when they put the IV in and by the time I got there, she was calm and in complete control of the remote. She was also developing more hives. But she was acting like herself, including taking selfies and a million other pictures. After a few hours of meds and observation, she was sent home with instructions to give her regular doses of Benadryl for two days to prevent any delayed reactions. So in terms of allergic reactions, it could have been much worse.

This is my sad kid. All the blotchy redness you can see on the bridge of her nose and her cheek is actually hives. They were crawling down her neck and onto her chest as well.

In spite of everything, she still grinned for her selfie.

I get asked surprisingly often how we found out that Matthew has food allergies. My answer is always, “The scary way.” Honestly, I don’t think there is a not scary way to find these things out. Even being as watchful as I have been and knowing what I do, last night was scary. It would be for any parent.

When I woke up this morning, the first thought I had was that Malia won’t be able to eat at Kneaders anymore. That is her favorite place so it was a sad thought. We don’t know yet how severe her allergy is although based on her reaction last night I don’t think it is as severe as Matthew’s. But it is still going to mean changing some of our food routines. We won’t be able to just stop for lunch whenever and wherever we want. Eating out will require some research in advance to see how each establishment handles nuts. She won’t be able to eat things baked at local bakeries which will be good for my waistline but sad for our occasional cookie or doughnut runs. She will need to be careful about what candy she eats, especially chocolate. I know it’s not the end of the world, but it is disappointing. She looked terribly sad this morning when we told her she wouldn’t be able to eat M&M’s.

This is not what I wanted for her. It is not what I want for Matthew either, but it is one of those things that I can’t fix. All I can do is try my hardest to make their lives as normal as possible and help them feel included in all of life’s festivities.

I know that was a lot of negativity just now. But sometimes I just need to brain dump it all so I can put on my big girl panties and deal with it. So now I need to remind myself that being allergic to just peanuts is nowhere near as hard as being allergic to all of Matthew’s stuff. Malia will still have lots of options. We just need to readjust our thinking. But we’ll figure it out, just like we always do.