I just found this post in my drafts that never got published, and I thought I’d still share it.  This was originally written in August just after being completely disappointed yet again by another bad test result.

Food allergies. Need I say more?  Here we are just after Lexi’s third birthday and it’s time again for re-testing, and I just KNEW that we are going to be able to add something new into her diet this year.  So, we go for the allergy skin test and she tests negative to all the grains — wheat, oats, barley & rye!  Woohoooo! Then we make our yearly trip down to Children’s to have blood drawn, and we get the results back a week later and they are utterly devastating.  In the allergy world, there is a ranking Class 0 (not at all allergic) – Class 6 (severely, holy crap, totally allergic).  Lexi was all Class 4′s, 5′s & 6′s for everything.  I was in the depths of despair (to quote Anne of Green Gables) for three solid days, accepting no solace from anyone or anything.  I convinced myself that she would have this affliction for the rest of her short life and she would soon one day die of anaphylaxis –  hey, I’m just telling it like it is… and it was b-a-d! Then I decided we needed to revisit these results with the allergist.   David and I really weighed them and decided that since she has never actually ingested (eaten) wheat, we needed to know if it was true.  Skin testing is considered to be more accurate and conclusive than the RAST testing, and since the skin test was negative… we wanted a challenge.  Our wonderful Nurse Practitioner petitioned her doctor for it, and he agreed that if she could pass the barley challenge (class 4)… then we could go for the gold (wheat – class 6).  She handled the barley for a bit, and then she let loose and puked everywhere.  Poor girl!  I could not have felt more terrible.  And after all was said and done, and my heart started pumping again… I went to my hole.

My hole is the place where I can feel sorry for myself.  Sorry for my daughter.  Sorry that I can’t take her out for ice cream or pizza or a surprise cupcake or to the birthday party of my best friends kid.  I can’t even fuss at her to eat her macaroni and cheese for dinner (because, of course, she can’t have macaroni and cheese).  She can’t be normal.  And, as much as I try to be strong most of the time… because the hole really is no place to linger… it gets frustrating!  And angering.  Because dammit, I want my daughter to eat like a normal kid and worry about normal stuff.  Remembering the life-saving Benedryl and EpiPens and worrying over her and having my heart race just because she gets a little choked up due to swallowing the wrong way, and I worry that her airway is closing is exausting…

…and then I remember Ashley.

When Lexi had just turned one, I had taken her by myself to have her skin test and then to the hospital for a blood draw.  To say that it was difficult would be the undertatement of the century! It was awful for both of us.  So, after she had her blood drawn, I parked her stroller in the shade in front of the hospital and pulled out a soy yogurt to feed her.  I was minding my own business, getting her spoon out of her bag when a little girl walked up to me and asked if I was going to feed that food to my baby.  I said that yes, indeed, I was.  This precious girl looked at me and said ‘Well, can I feed your baby then?’  And I said yes.  She looked like she was about five years old, cute as a button… and without a single strand of hair on her head.  While she was feeding Lexi, we had the most wonderful little conversation (although if you asked me what we said exactly, I couldn’t tell you.  I just remember how enamored I was with her).  She was so sweet and so kind and caring to Lexi, and a few minutes later her family drove up to take her home.  I know that God put me on the sidewalk of Children’s Hospital that day so that I could meet Ashley… and gain a little perspective. Food allegies are tough.  And scary.  And really frustrating.  But controllable.  Thank you, Jesus, for that. Thank you that we can avoid the things that will harm her.  I do get frustrated and upset and all out of sorts, then it takes my memory of Ashley to pull me out of that hole… it gives me strength to move on and deal with my smaller problems.  I think we all need to meet an Ashley at least once.

Ha!  You didn’t think I’d be back for more, did you?!  It’s Christmas and I’m working a thousand hours per week, and yet here I am writing another post while Lexi plays in the bathtub right beside me.

So, first up, a report on this week.  I wrote out a meal plan last Sunday, and I stuck to it all week long… whoa.  That’s like amazing for me.  I cooked 4 completely healthy organic allergy-friendly meals this week.  It takes a lot of planning to make that happen, especially when the natural food stores are 40 minutes from your home!  But I did it and feel totally good about it.

I also am fully aware that reporting that I cooked 4 meals this week, and being proud of it sounds lame.  Whatev.  What’s done is done, the past is past, and all that crap.  Here I am now, changing it for my family… doing what I can, when  I can.

I thought I would also share the supplements that I’ve started Lexi on over the past 2-3 weeks.  The hope is that these will help with the eczema (and all-over health in general), and I need to give a HUGE thanks to Kelly over at Go Nutrition on Kingston Pike… she was a huge helper in helping me to find the right vitamins for Lexi, and I cannot wait to see how they will benefit her in months to come.  I’ve linked all of the items below to Amazon, but if you live in Knoxville and have been looking to try suppliments then I would really encourage you to buy from Go Nutrition… they are a small business and wonderful people, and I feel strongly about supporting local.

Lexi’s eczema is not an all over redness like it used to be, but it gets really, really bad in targeted spots.  So, hopefully over the next few months these supplements along with our new organic diet will help to alleviate this nasty skin discomfort for her… and allow us to stop using these terrible steroids!!  I debated listing all of the benefits of each one, but decided that you can look it up for yourself.  Here’s a pic of her latest regimen (albeit an iPhone pic, in the name of getting this done) along with links.  I should also say that these are all Lexi approved for taste (not an easy feat, I might add)  The first high-quality multi-vitamin that we tried passed through her lips once and never ever again if she has anything to say about it (sorry Vitamin Code, you are not for us!)

Barleans Omega Swirl – this stuff is de-li-cious.  Really, it’s good.  Not like when the health nuts try to make yucky stuff sound good, but this is really and truly good tasting.  She takes 1 teaspoon full in the morning.

Source of Life Multi Vitamin – she takes the gummies and I would call the flavor tolerable, and it surprised me that Lexi really likes it.   I use these as her reward to get dressed quickly in the mornings, and it totally works.  She gets 2 of these in the morning.

Source of Life Vitamin D – this is a berry flavored chewable vitamin and she loooves these, they are her fave and she would seriously overdose on these if we left the bottle in her open and in reach.  She gets 1 of these at lunchtime.

Source of Life Vitamin C - these are orange flavored, and don’t taste bad… but they are TART!  As her reward for looking like she just sucked a lemon after chewing these up, she gets 1 organic jellybean (the food reward choice of our home, lol!) afterwards.  She takes 1 at lunchtime and 1 at dinnertime.

Sedona Labs Probiotic iFlora for Kids – this comes in powder form, and you mix it into their drink or applesauce or whatever.  I mix it in her soymilk and she cannot taste it.  Since she is very allergic to milk, we had to take care to find a probiotic that was milk-free… so rest assured that this one is.  This is also the only product that I have found significantly cheaper online… the store price is $32 for the same item.  She gets 1/2 teaspoon in the morning.

The bathwater is now freezing and she’s chattering her teeth while happily playing.  I think it’s time for her to get out

Do I even need to address the fact that I haven’t blogged in forever and ever?  Same old story… busy, busy, and quite honestly just not making the time for it. We are, though undergoing some bigtime change in our household, and for posterity’s sake… and the possibility of helping another mama make some bigtime changes in her home, I’ll be blogging yet again.

Most people who know me, know Lexi’s background too but I feel the need to start at the beginning so that our journey can be chronicled completely.

At just three months old, Lexi developed a severe weeping rash on her cheek that would not heal.  After several visits to the pediatrician, they finally sent us to Children’s Hosptial for a RAST test.  The results came back the day before she turned four months old… she had severe food allergies.  She was a Class 5 or 6 on nearly everything.  I had to either eliminate all milk, wheat, eggs, nuts, seeds, whey, casein, and beef from my diet… or stop nursing her and switch her to soy formula (soy was about the only thing she wasn’t allergic to!) immediately.  These foods in my breastmilk were making her sicker and sicker.  It was an incredibly difficult decision to make, but ultimately, I knew that I could not make such a sudden change in my diet and work full time and care for a newborn.  And I hated everything about that.  But she developed and thrived on her formula, and quite honestly, acted as if she noticed no change at all.  Since then, she has been re-tested every year and has always had equally bad results.

The only advice that the medical field currently gives on food allergies is strict avoidance.

That drives me crazy.  I want need to do something.

Along with the food allergies, she also has severe eczema.  I’m talking scratching till it bleeds, make you wince, everybody is staring at her face, strangers coming up to me and asking me ‘why don’t you put some lotion on that baby’ (seriously.), making us both cry, red and dry all over, bad, bad skin.  No matter what we try.  And we’ve tried it all.

Most recently, the wheezing has begun.  She does not have an asthsma diagnosis, but our allergist believes that we are heading in that direction… breathing treatments and Singulair…

And now I’m done.  Done thinking that I’m helpless.  Done accepting the status quo in our home.  And, most of all, done with our disconnect.  Confession time: I have only embraced Lexi’s food allergies in the minimal way I could in hopes that she would grow out of them and I could feed her regular food… meaning that we have always had our food and her food.  Three years later, it hasn’t happened and I’m feeling ridiculous.  And guilty.  And now she’s old enough to begin to see and verbalize this disconnect.  A couple of weeks ago, she was pretend playing with her dolls… they were eating and one doll said to the other, ‘NO!  You can’t eat this.  You are ALLERGIC!’ On one hand, I believe that it’s good and healthy for her to understand that there are foods that she simply cannot have.  On the other, it breaks my heart that she feels left out.

So, all this time I’ve been waiting for her to get better… and now I am accepting that she may not.  However, come hell or high water, I’m going to do what I can to strenghten her immune system (food allergies, eczema, & asthsma are all immune disorders).  So, here we go.  Over the past two weeks, I have cleaned out the fridge, freezer, pantry and all cabinets… and thrown away tons and tons of food (which, by the way, I totally should have taken pics… you would not believe how much I threw out!)  Lots of it was expired, and some of it was just plain junk.  I am rebuilding our supply from the beginning and on the healing track, and I’ll be blogging our progress along the way.