I should have posted about this right after, so that it could be an entirely positive post. We've really slowed down with testing because either Carter's been sick, or his allergist has been full. We finally got some more prick and patch testing done in November and Carter passed every single thing. I'm talking 100%!! I don't think that has ever happened. I was beyond thrilled. To make it even better, most of the things were spices, so that now his three approved proteins: chicken, tuna and tilapia can have sooo much more variety just by switching up the spices. It really will open up new flavor profiles and I am sooo grateful.
Here's what's passed both prick/patch testing and is now a part of Carter's diet:
great northern (white) beans
chick peas (garbanzo beans)
Seriously! Talk about a whole new world. I can stop modifying recipes, or making them so plain. I hope his taste buds are ready! And, talk about a huge blessing: corn starch! That is a fabulous thickener, and might allow me to buy certain store-bought sauces!! Hooray!!
This past week, however, we went back for more prick testing. I think I was feeling a little untouchable from the last test, and so I was quite let down. Looking back, he's had worse tests...but I guess I wasn't ready for it this time.
He failed/will not be able to eat/is allergic to:
OUCH. I rarely get my hopes up anymore, but I had honestly been praying, pleading for egg whites. He had originally failed whole-egg extract over a year ago, and I was desperately wanting egg whites. So much of gluten/wheat free baking uses egg whites. A lot of candies use egg whites, and it's such good protein. He can have everything on the ever-popular-gluten-free-brand, Udi's, except for egg whites. We were sooo close to having bread. Especially store bought bread. I'll have to keep looking for a recipe that doesn't use it.
I was also hoping for flax seeds since that is a good egg substitute.
I was really wanting sunflower seeds, because they make a peanut butter taste-alike-substitute made out of sunflower seeds.
Kidney beans was just odd since he can have black and northern beans. There just seems to be no rhyme or reason.
I love Mexican dishes, so again...I was hoping for chili powder. I wish I could trade that for sage or some other less common one he can have. Unfortunately, there's no bargaining involved in this cruel process.
And pecan. I think we've about tested every nut now. I really just wanted one. And, pecan is one of my favorites.
All in all, I left a little dejected. It didn't help that it had been like a four hour appointment and was blizzarding both there and back. It was a long, sober drive home. He still passed ten others, which we'll be patch testing to next week. If he passes patch testing he can have those. So, there could still be a lot of positives to be had.
His reaction to the egg whites and pecan were huge welts on his back. Egg white was 17x20, and pecan was 10x10. I think those are his largest to date. My allergist said that those will probably be anaphylaxis-type reactions, and to plan on having to administer an epi-pen if he ever accidentally ingests those. Those are the scariest to me. He's starting to get so many anaphylaxis ones that when I'm in a bad spot, it makes me not want to leave the house. Food all of the sudden seems so dangerous. For example, we had our ward Christmas party last night. It was catered. Those type of events used to be so fun for me. They should be fun. But, instead of not having to worry about cooking that night and enjoying the free food...we're still packing dinner for Carter to eat there. I feel guilty eating in front of him, and as he runs around like a maniac all over the church gym I'm not relaxing and letting him go, but following a few steps behind him, worried someone will hand him a treat, or that he'll snag something off of a table, or the roll the kids in front of us dropped on the floor will end up in his hands, and he'll end up in the ER.
I know people who just have one anaphylaxis allergy and there are still deaths each year, or they have horrible ER reactions to it (thankfully, many do not) but still....I wonder with every additional anaphylaxis allergy we find, does his chances increase for an accident? I can't let myself go down that path otherwise I'll drive myself crazy (and sometimes when I don't have the energy to fight off the worry, I do).
Back in October we went to our very first walk for food allergies benefit. I was so very sick from the pregnancy and just kind of spent. I heard people talking about going to Olive Garden after to celebrate and was just dejected, wishing that I could be like them and 'just' have a peanut allergy (not that those are any fun too...mind you I was in a bad spot mentally). Carter will probably never set food in that restaurant.
We were driving home and it was the afternoon session of conference. We turned it on and listened as we drove. These words were a healing elixir to my soul. After listening to it again later, I realized it was about mental illness, but that we had tuned in after he had said that. I think that was supposed to happen on purpose,because I needed to be able to personalize the message. It came to me again today, as I was feeling down about the failed test, so I will share parts of it with you now:
"...If you are the one afflicted or a caregiver to such, try not to be overwhelmed with the size of your task. Don’t assume you can fix everything, but fix what you can. If those are only small victories, be grateful for them and be patient. Dozens of times in the scriptures, the Lord commands someone to “stand still” or “be still”—and wait. Patiently enduring some things is part of our mortal education..."
"For caregivers, in your devoted effort to assist with another’s health, do not destroy your own. In all these things be wise. Do not run faster than you have strength. Whatever else you may or may not be able to provide, you can offer your prayers and you can give “love unfeigned.” “Charity suffereth long, and is kind; … [it] beareth all things, … hopeth all things, endureth all things. Charity never faileth."
"Also let us remember that through any illness or difficult challenge, there is still much in life to be hopeful about and grateful for. We are infinitely more than our limitations or our afflictions!..."
"I testify of the holy Resurrection, that unspeakable cornerstone gift in the Atonement of the Lord Jesus Christ! With the Apostle Paul, I testify that that which was sown in corruption will one day be raised in incorruption and that which was sown in weakness will ultimately be raised in power. I bear witness of that day when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body and mind. What a thrilling moment that will be! I do not know whether we will be happier for ourselves that we have witnessed such a miracle or happier for them that they are fully perfect and finally “free at last.” Until that hour when Christ’s consummate gift is evident to us all, may we live by faith, hold fast to hope, and show “compassion one of another...” ("Like a Broken Vessel", Jeffrey R. Holland, October 2013 LDS General Conference)
I too believe in a life after this, where the cares of our bodies will no longer affect us. The thought of Carter not having to struggle with food someday brings me such relief. On bad days, it still seems like this life and its struggles sluggishly move along. I do know that when all is said and done, when this life will be but a dream we'll look back and see how our struggles made us stronger. So, for today, I'll try and celebrate passed spices and his first test, and try not to dwell on his second test.