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.

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Annual Allergy Testing

“He is among the worst I’ve seen, and I see a lot.”

“His body is highly reactive like it enjoys going into Anaphylactic shock.”

“His immune system is on fire.”

“I feel for your family because this is life and death.”

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I’m not so sure what I was expecting. I’m not all that surprised by the results, but somewhere deep inside of me was praying, wishing, and hoping for some huge turn-around. Like I’d skip out of the office joyfully and run home to give him a strawberry before they’re out of season and see the joy all over his face over the pure sweetness. TJ was wishing we could just open up his food world a little bit to give him an experience he’s never been able to have with us.

But two minutes into his skin test this morning, I knew we were not going in that direction at all.

He cried, wanting to itch his back so badly and a huge part of me broke for him. Oh, how I wish he didn’t have to carry this.

He’s so brave.

He’s so perfect.

When his Allergist came back into the room, he took his seat and praised us for doing as much as we do every day for his safety.

He acknowledged my flowing tears (hello pregnancy hormones), and assured me I am perfect for my son.

And then he gave me a full picture of what Jonah deals with daily.

It’s not just the worsening of his already existing food allergies. It’s also the addition of many environmental allergies. It’s also the Allergic Rhinitis diagnosis. It’s also very serious asthma that poses a real threat to his respiratory system during any allergic reaction. It’s also his out of control Eczema that is a systemic infection, screaming at us that his immune system is working in overtime.

He is just so brave.

So perfect.

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Current Allergy List:

  • Dairy* (worsened, if that was even possible)
  • Egg white* (worsened)
  • Peanut*
  • Cashew*
  • Almond*
  • Walnut*
  • Avocado (worsened)*
  • Sesame Seed*
  • Strawberry
  • Banana*
  • Latex*
  • Shrimp
  • Soy
  • Carmine (red food dye)
  • 3 types of grass
  • dust mites
  • cats

*denotes likely Anaphylactic allergens

We love him just as he is. Perfection. Brave. Happy. Protected by a Great God who holds him.

February Salad-A-Day Challenge

I can hear the excuses now:

  • I always mean to eat salad, but it sits, withers, and gets sad until it stinks up the fridge only to be tossed in the trash for the third week in a row!
  • I’m completely uninspired by the bag of salad sitting there knowing I have to put forth effort to make it something special I would enjoy eating it.
  • Honestly, I avoid salad like the plague because I feel like a rabbit when you chew on that piece of romaine.
  • I want to get a couple more veggies worked into my day, but it just never happens.

If any of the lovely excuses above apply to you (ummm…sheepishly raising my hand), you may want to join me on my little challenge for the month of February as I eat a salad-a-day!

As a mom with a busy little kiddo running around, it’s become increasingly hard for me to sit down and have a real meal. I’ve noticed I’ve started to snack all day. Breakfast slips by with nothing and is followed by a granola bar or a string cheese for lunch (or eating pieces of Sadie’s food in an effort to convince her that what I’ve offered is yummy in her belly). By dinner, I’m exhausted, famished, and discouraged from not eating anything worthwhile all day.

So buddy up with me! Get out that huge plate or gigantic bowl and load it up with some good kinds of lettuce, fruits, veggies, nuts, cheese, or beans and homemade dressing!

I’m looking forward to packing in some good ‘ol veggies into my diet more intentionally this month and showing you the pictures of my creations. I’m also looking forward to reporting the positive changes I feel as a result of committing to a healthier meal at least once a day.

You say you’d like to take the challenge but don’t know of any good recipes for homemade salad dressing? Keep your eyes peeled for some good recipes in some upcoming posts!

Hot Toddy Anyone?

Leave it to me and my sorry excuse for an immune system…but tonight called for my mother-in-law’s famous hot toddy. The first time I had this concoction, I was at TJ’s parent’s house after just meeting them and got sick because that’s what I do best…get sick at the worst possible times in the worst possible ways. I’m hoping that I’m just overly tired and stressed out with the move coming up in less than a week now, but this may be the beginning of a cold. I knew it would happen sometime. Any time I go through any sort of life change, stress, anxiety about the unknown or a combination of strong emotions similar to what I’ve listed, I get overly tired and then get the sniffles. Well, not really the sniffles. It starts with the sniffles and then I get some rare infection that Dr.’s have never attrubited to the normal cold, and then get teased by my family for being so complicated…but that scenario cannot happen because we just don’t have the kind of time to be rushing me to specialists all over Orange County.

Although nothing is full fledged yet, I am “doctoring up” with a HUGE shot of whisky, honey, and tea in my hand to guide me into a nice slumber for the evening. TJ has me all set up with Aleve Sinus/Cold-D (amazing stuff), Echinacea tea, Echinacea lozenges, Zicams, and tissues ready to go!

Hopefully I just need a good night sleep and maybe a bowl of my mom’s matzo ball soup.