Disheartening Regression

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I have hesitated writing this down because, to be quite honest, I have wanted things to just turn around and be a non-issue. I tire of talking about it because these issues seem to be so all-consuming that I find myself just longing to think about something other than this. I also find it hard for people to really understand where we find ourselves because the majority of people just throw something on the table, sit down and eat. We are not that family.

Don’t get me wrong, I enjoy food and cooking.

But life as it is right now is about stressing amounts, reading labels, counting the calories, planning the menus, throwing pounds of food away a week at a time, spending huge amounts of money on safe foods/recipes to try, crying at meals, standing by with the EPI Pen, sneaking in the protein, starting and ending each day literally begging God for him to simply open his mouth and chew, and feeling downright defeated throughout the entire process.

Nothing about food allergies is easy. Add in Eosinoliphic Esophagitis and GERD and you have one heck of a battle on your hands and every hour of the day lately we seem to be losing.

But this is our reality and I know there are people out there who read this blog who are on the same journey we are. There are also so many who have taken our little boy under their wings and feel connected to us through the hardships we have had through prayer, practical help, etc. So I write to update and to help someone else navigating the days that seem so scary and uncertain. We are there.

So, what’s happening?

Once again we are finding ourselves exactly where we were this time last year. Although this time, we already have a fantastic team of Doctors we trust, and thankfully a diagnosis to assume as the culprit. So what is happening with Jonah is still scary, but we are confident we can get him the help he needs without the fight of someone taking us seriously.

Jonah’s eating has gone from acceptable to not-so-good to almost nothing over the course of six weeks. He’s back to losing weight quickly and we are once again finding ourselves in a panic, desperate for him to eat. And although he has gained back the weight he lost last year, he hasn’t ever gone past his original weight from his first year of life.

Our hunch is that he is having an allergic reaction that is going unseen (happening inside his body) that is causing his Eosinoliphic Esophagitits (EoE) to worsen. When there is allergic reaction, esonophils in your Esophagus can become inflamed, causing pain, damage and swelling. Up until now it has been controlled by medicine and the elimination of known allergens in Jonah’s diet and he has been out of pain, not vomiting, and a much happier little boy.

Between his GI Doctor and his Allergist this week, they will be able to determine if we should either change habits in medication and do a wait and see sort of thing or if we should go ahead and do another Endoscopy to biopsy white blood cells to diagnose the severity of his EoE currently compared to almost a year ago.

My fear is that he will need to go to an elemental diet where Jonah is off all solid foods and on an elemental formula diet to give him the nutrition he needs until he shows signs of improvement on his own with eating.

The other aspect to all of this is that between his many severe food allergies limiting his diet, past trauma caused by pain from EoE and past bouts of Anaphylaxis, it is more than evident to us at this point that he needs feeding therapy to help him eat. There are issues with different textures, with broadening his acceptability to other foods, presentation of foods without refusal, and simply learning to enjoy the process of eating.

Up until this point we have done well on our own with what I know from my past time in Speech Pathology, but I am also part of his problem since Jonah associates me with so many of his food issues.

He begins a new round of evaluations and assessments tomorrow.

So, there you have it. It’s complicated. It’s stressful. It’s disheartening. And it’s a long road. Please pray for improvement for Jonah, for comfort and patience as his parents, and for Sadie to continue on as a cheer leader for her little brother.

Menu Plan

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Even though all I am craving right at this moment is a huge bowl of potato soup, eh…maybe Corn Chowder and a hefty side of chocolate malt balls (weird, right?!), I am planning for meals that have actual nutritional value of some sort and not for every single whim and desire that seems to fly my way.

If this boy in my belly could have his way, I would be on a very steady diet of all things potatoes. Mainly in the fried fashion. Oye vey.

Here’s what we’re chowing down on this week:

1. Lasagna Stuffed Spaghetti Squash (adapted for Jonah to be dairy-free)

2. Vegan Pesto

3. Turkey Tacos & Salad

4. White Chicken Chili

5. Breakfast for Dinner (Brinner)

 

21 Days: Reclaim, Release, Restore

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The streets of heaven are paved with broccoli stalks and lined with trees brimming with fruit to pick. There’s a never-ending ocean of kale and it rains freshly juiced beets and carrots from ominous artichokes in the sky, I’m sure. Or at least that’s how I have been imagining heaven for the past few months.

Really.

I have felt so unhealthy I actually day dream about this stuff.

The more hairy things got with Jonah’s deteriorating health, the worse I got with my own. I wish I could tell you what I ate the past few months, but by and large it was anything I could stuff in my mouth in a moment that would simply stop the audible sound of hunger coming from my stomach. Some days I didn’t eat anything until the kids were in bed because it was just that bad of a day.

Sure, I had days here and there where things were my usual…

But some days I found myself mindlessly eating out of frustration that Jonah couldn’t eat anything at all. That’s smart, right?! Well…if he won’t eat, I will. Mature, I know.

Let’s not even broach the topic of what chocolate does to a stressed out, over-tired, worried-sick Mommy. The sick relationship has had a break-up coming.

The bottom-line is that I have not felt like myself. I feel unhealthy, off-kilter, undone and it’s showing.

Even though this seems daunting and intimidating, especially given I make everything from scratch for 14 food allergies to tend to, I have decided to begin a 21-day journey doing the Ultimate Reset. UltimateReset-Supplements2

The program-

The Ultimate Reset is basically eating three meals a day from a tested meal plan with recipes included while taking supplements that work in phases to reset your body to maximum health.

Whether it be from the toxins you eat from a not so stellar diet, environmental pollutants, or health issues, each and every one of us can benefit from ridding our bodies of these things and start with a clean slate.

Week 1 is all about prepping your body for change to release toxins. It’s about reclaiming your health by putting good food into your body. You slowly decrease consumption of meat and dairy, which are known to tax your digestion and cause inflammation that are known to be the breeding ground of disease to take a foothold.

Week 2 is the week where you are releasing all of those bad toxins that have built up over time in your tissues, clogging your cells and blocking absorption of nutrients. I’m really looking forward to this week because I feel like I’ll be working on the same thing Jonah is in getting everything good I can into my body with food to help, not hurt my body. At this point, you will be eating a full vegetarian diet.

Week 3 you restore your metabolism to maximum efficiency, putting nutrients, enzymes, and pre-and probiotics back into your system. You’ll cut back further on grains and will be eating mostly fruits and vegetables. The good news is that you can incorporate Vegan Shakeology into the mix. Yes, please.

Remember, this is re-teaching you about food and how it makes you feel when you eat it. No crash dieting, no starvation, no harsh laxatives or missing work so you can be by a bathroom!

My Goal-

For a couple of years now I have been researching on my own what food really does to your body. I know a lot in my head, have implemented things slowly into my life on by one to create habits for my family, and have seen first hand how food is our medicine. I’m really looking forward to my eyes being opened on how I can improve even more. It’s something that means a great deal to me since cancer runs very strong in my family and I have had my own scares that have really made me stop and think about how God wants us to view our bodies and what we put in them.

I’m hoping to have more mental clarity, drop a few added pounds I’ve gained from not eating my norm, and have more energy to keep up with the demands of two little people who never slow down and get the jump start I need to get back to my habit of working out harder than ever while training for my 10K mud run in June. An added bonus would be to stop all the hair loss I’ve had from stress in these past few months.

This is a time to really focus in on me and commit to doing something that will make me a better version of myself…a better wife and a better Mommy.

Come With Me-

This weekend I’ll be buying the food and getting ready for my first day! I’ll be updating the blog on how the process is going…the good, bad and ugly. I’ll post pictures of the new recipes I get to try out and how it is not only impacting my body, but how it impacts my relationship with food and how it relates to my health. Hopefully you will be able to relate and I can be of some encouragement to someone along the way on their own journey to better health. So come with me for the ride!

 

Eating Without Guilt

 

Food is an emotional event.

Whether you mean to or not, you associate times in your life and events with food.

Even though she is long gone now, I can still smell and taste my Mom’s peach chicken she used to make us for dinner all the time and the chocolate chip cookies we used bake, package up, and take to the nearest convalescent home.

Those are foods to this day I still have such a pleasurable association with.

It can just as easily go in the opposite direction, as well.

For instance, I can’t bring myself to eat gnocchi from one of my favorite restaurants because seven years ago I ate it and then woke up hours later in the wee hours of the morning vomiting every bite of it as a side effect of the pain from a kidney stone. As good as it was to eat at first, the dish simply lost it’s appeal after an episode like that.

I used to love nothing more than to open my fridge and plunge the biggest spoon I could find into a tub of freshly ground honey roasted peanut butter from Whole Foods and eat it for a mid-afternoon snack until I saw my Sadie through my rear view mirror ballooning up and struggling for air after having one teaspoon of the same thing. You don’t forget pleading with God to give your first born child breath.

Or how about my past-time favorite breakfast option of some creamy vanilla yogurt with some hemp granola and berries scattered on top in a big mug that I could nosh on as I got ready for my day in the morning? That sounded like bliss until Jonah broke out in a massive rash and his lips started to turn blue when he had a spoon full. You just can’t erase the experience of sheer fear you have while you watch your baby struggle and you are alone in it.

Some of the events that take place around food are ones you simply can’t shake and they no longer mean the same thing.

Right now I am still breastfeeding Jonah and am continuing to avoid the allergens that pass through my milk supply to his system. But there will come a day soon where he doesn’t nurse anymore and I will be free to eat however I choose when I am not around my kids. But if I am honest, I will admit that there are triggers for me with food that exist now that give me a true level of anxiety instead of the familiar pleasure I was accustomed to. And the thought of weaning and gaining the freedom of choice is not something I’m really looking forward to like most probably would. The Allergist Mom has coined it as post-traumatic disordered eating and I resonate with her evaluation to the tee as a parent.

Will I still go to a restaurant someday soon with my husband and enjoy a slice of gourmet pizza laden with wheat and dairy? Sure. Will I do it without reading through the menu automatically weeding through all of the ingredients that are “no-no’s”? Not a chance. Will I do it without the flash of my Jonah writing in pain and me frantically grabbing his EpiPen ready to strike him in a last ditch effort to save him? Never.

If you are a parent having to integrate into this new world I am learning to call my new normal, know that you are not alone in it. Acknowledge it exists and then try your best to take a bite with no guilt. I will try my best to do the same.