Two Story Cottage

Bad Things & Good Things

Dear Friends,

Last week was one of those “is this really happening” sort of weeks that makes you thankful for the nice, normal, sometimes boring “regular” weeks.   Reid had a fever last Monday and I was bummed because, frankly, I really wanted him to go to school Tuesday.  I had a couple of appointments and plans that were hanging in the balance so I was frustrated by the little setback.

After wheezing set it on Tuesday, I knew school wasn’t happening so we made the dreaded trip to the doctor’s office.  We got some breathing treatments and crossed our fingers that he would respond right away.

reid_sick

Well, Wednesday passed and after a rough night, I knew something wasn’t right because he was still in and out of fever.  We ended up going for a chest x-ray and wouldn’t you know he had pneumonia.

It was the weirdest thing.  He went from perfectly healthy to really sick in no time flat.  That seems to be the Reid way. I’m not sure if it is the autoimmune disease rearing its ugly head or if it is just how his body works.  Who knows?

Antibiotics and absolute rest were on the agenda.  Like snow days or time in the hospital, it is like the calendar just poofs into thin air and everything that seems important disappears.  A time warp of sorts. We did have a lot of treasured snuggle time but by Friday I was begging for a jailbreak.  Luckily, my newly-retired dad came to relieve me for a couple hours so I could make a much needed trip to the store.

Funny, this is sounding all about me.  I know – poor, Reid.  He was pretty pitiful.  He is doing much better though and I’m thankful for his rocking good attitude.   After a couple of days of antibiotics, he was feeling well enough to go to Greenville for the weekend.  We had a scheduled visit with the grandparents and cousins so I was grateful we still got to go- particularly since Mr. C and I had planned to steal away to Asheville for some time just the two of us.  My in-laws were totally up for the challenge and we left Reid in good hands.  Luckily, he was sleeping well and feeling much better by that point.

antiques

I was sure our little getaway wasn’t going to happen but I’m so glad we decided to go- it was well worth it!  In the end it all sort of worked out.  A tough week followed by a blissful, beautiful time.  Oh, and I went to the Tobacco Barn for the first time.  The building is crammed full of the most amazing things.  We were there maybe 10 minutes when they called for closing time.  Apparently, the winter hours are different from the rest of the year.  It was a this-must-be-a-dream tease.  I didn’t buy a thing but I already know I have to go back some day.

The hard part now?  I still have to keep him resting.  Uh, yeah.  Tell the 4 year old boy who feels much better and has been shut in a bubble for a week to “rest.”  Reid is a study in motion.  Absolutely nothing he does is restful.

Nothing.

Wish me luck!

-Erin

P.S.  We are attempting preschool later this week but no physical activity.

And cue the laughter. 

 

Reid Health Update (& Results)

Dear Friends,

I thought it was high time for a Reid health update.  If you remember, he was diagnosed with an autoimmune disease called Eosinophilic Esophagitis in May. Basically, his esophagus is allergic to many food proteins, which when ingested, causes vomiting and makes eating painful.  After extensive allergy testing, we discovered that he is sensitive to dairy, egg, beef, chicken, soy, corn, oat, tree nuts, and white potato.

It was a big whoa to say the least and our lifestyle changed overnight.

Although it has been hard, we have honestly adjusted to Reid’s crazy new diet.  He can eat turkey, pork, sweet potato, fruits and vegetables.  I shared some of our go-to recipes here.  The fact that he is feeling SO much better makes the diet easier to maintain.  We are seeing a difference in everything from energy level to motor skills.  The vomiting stopped weeks ago but the further we go on the elimination diet, the better he seems overall.

happy_healthy_reid

We can still picnic no matter the dietary restrictions.

Last week, Reid had an endoscopy to check his progress as he has been on the new diet for about ten weeks.   We had our fingers crossed for a good biopsy but did not find out results until Wednesday.

While his esophagus is still healing, the eosinophils (white blood cells) that are not supposed to be there have decreased dramatically.  Previously he had between 50 & 60 white blood cells hanging out in his esophagus which was making him very sick and sucking all of his energy. He now has NINE eosinophils in the esophagus. With a number less than TEN, he is considered in remission.

Now what?

This is far better news that we could have imagined. Usually it takes a couple of rounds of allergy testing to pinpoint all of the culprits.  For now, we stick with the current crazy diet and enjoy our healthy boy.

After Christmas, we will start the process of food trials which is where we can see what food from his allergic list that he might possibly be able to tolerate.  I’m not quite ready for that, especially now that he is feeling so much better.

This was a September miracle for us and I plan on enjoying the next couple of months before we shift things once again.   I’m learning things daily about food and allergies and ingredients.  Is there an honorary degree for label -reading?  If so, I might qualify.

We are used to packing Reid’s food for everything, but it is a wee bit harder now that we are out of the summer bubble.  Preschool has been a little challenging with class parties and snack time. I have to provide everything he eats and the teachers understand the situation, but just yesterday we had a very close call with a substitute teacher in the classroom.  Luckily, Reid told the teacher he wasn’t allowed to eat the snack she had given him.  I am so thankful that he is figuring all of this out without us really explaining it. Because he can’t have most everything, it is easier to tell him what he CAN have. I think the fact that he feels so much better helps him resist the yummy things he cannot eat. Two months ago, he would have jumped off a cliff for a goldfish cracker or dug one out of a trash can. Yesterday, he said, “Yeah, I can’t eat this.” Church is equally hard because of rotating volunteers – I’ve decided I need to put a giant piece of tape on the front of his shirt that says,”do not feed under any circumstances”.   People will think he is a zoo animal, but what can you do when the world is determined to give your child cheese cracker snacks?

I’m feeling very positive after our excellent scope. I try not to think too far into the future because it will be a long road with possibly years of food trials; however, this is a pretty new disease, so who really knows?

I was a little sad to miss out on “Talk Like a Pirate Day” at Krispy Kreme – I’m a sucker for free doughnuts and a fun reason to celebrate. On the flip side, we have discovered that Reid can eat sorbet at Sweet Frog which is a blessing. It is nice to have one place to go for a special outing.

October brings Halloween which is another new challenge.

Thanks for your well wishes everyone!

-Erin

 

Reid Food Allergy Update #1 (post-removal)

Dear Friends,

Today marks twenty-four days into our new way of life and we are officially surviving.  Maybe even thriving.  Reid said goodbye to beef, chicken, soy, dairy, eggs, tree nuts, oat, corn, and potato July first and we haven’t looked back.

It has been both harder and easier than I imagined which is a convoluted but truthful statement.   We have a set group of foods now that he eats on a rotation basis.  We found bread at Great Harvest (a bakery chain) that is dairy and egg-free which is a life-saver.   Rice cakes and non-corn tortillas have been essential in the process.   Organic deli turkey and ham are my new convenience food.

The biggest change right now is lifestyle.  We ate out kind of a lot before.  I don’t think I realized how much until now.  We have had a couple successful restaurant meals where I brought his food but we will definitely be dining at home more.

The summer has been a true blessing.  We haven’t had to deal with school treats or special circumstances so it is relatively easy to stay within the boundaries of his allergies in our little bubble.  That being said we did survive a week’s vacation to the beach although I took the contents of my pantry along.  And then some.

photo 1

We have managed to substitute most treats without drama or trauma but I miss going for ice cream.  It is the only thing I’ve been truly bummed about.   Let’s face it – the ice cream is more about me than him.  My own perfect family fantasy involves a waffle cone.  He has eaten dairy free concoctions at home but it is not the same as a core-four  trip to the corner ice cream store.

It sounds crazy but if you focus on the positive right now there is still a ton of stuff he can eat. Enough where we can get through a week without repeating everyday which is huge.

For those that are interested in allergy-friendly dining we have had success with a few things:

allergy_friendly_food

Whole Wheat Waffles (used coconut milk & a flax egg substitute)

Chicken (Turkey for Us) Nuggets (used turkey, replaced egg with coconut milk, eliminated parmesan cheese)

Cupcakes for Two (used agar powder to replace egg whites; this saved us on Lacey’s birthday)

Wacky Cake (we used to make doughnuts for Lacey’s birthday)

Chocolate Chip Cookies  (replaced soy milk with coconut milk)

Namaste Foods Pancake mix (used applesauce substitute)

I was a Trader Joe’s lover before but I’m about to be president of the fan club.  Sweet potato chips, flat bread, coconut yogurt, vegan chocolate, and sorbet are just a few of the many foods I’ve found.

Reid is showing us that food removal was the way to go.  He feels so much better.  He stands taller, tolerates more, and has more energy.  He has not thrown up ONCE in twenty-four days. Knock on wood but that is pretty obvious success.

We have a few check-ups in the coming weeks and I’m looking toward his next endoscopy with a hopeful heart.

Thanks for your thoughts and prayers everyone.  We are all a little stronger than we thought.

-Erin

 

 

 

 

 

The One Where The Boy is Allergic to Food

Dear Friends,

We have some answers regarding Reid’s health.  Can I get an amen?

For most of his life, this kid has been throwing up with bouts of lethargy that just put him in a tailspin.  The bruising, the sleep disturbances, and the sensory sensitivities were all one big funnel of something.   I joke about the puke fests but really I just wanted to find what was disturbing my otherwise genuinely cheerful child.

reid_happy_personified

I went into our endoscopy in May, thinking for sure that Reid had celiac disease.  We had exhausted so many other options and it really made perfect sense.  We were going gluten-free and wheat was going down.  I was armed and ready to be the GF super-mom.  Give me the rice chex and your flour conversions.  I’ve got this, yo.

Yeah, I was wrong.  It happens.

The endoscopy showed that Reid has something called Eosinophilic Esophagitis.   I can’t say it either.  The nickname is EE or EoE.  It is an autoimmune disorder , essentially an esophogeal allergy where white blood cells storm the esophagus because it sees certains foods or environmental allergens as invaders.  The throwing up and other symptoms that we see are side effects of the body attacking itself.

Rock on.  We have a diagnosis.

Well, I should have held my hallelujahs because we are preparing for a journey that may well cost us our sanity.  In some cases, EE is easy to rectify.  Adults can take a steroid.  Sometimes patients only have to give up a food or two after seeing the allergist.  That was my hope.

I should have known, y’all.   I was all, “well, we don’t really have a lot of food allergies in our family.   Other than wheat, I can’t really imagine what he is allergic to.”

That is foreshadowing people.  The “I can’t really imagine” part.   I’d like to insert a belated face palm now.

Let me rewind to last week where we went to see an EE experienced allergist.  He did a combination of prick and patch allergy testing on Reid to help identify his issues and hopefully prevent false negatives or positives. After a few rough days, we had our answers.

reid_pitiful_collage

The boy is allergic to ten things.  TEN.  Definitively.  We can sing an allergy for each of our ten fingers to the tune of Ten Little Indians.  Which is no longer PC or relevant so Ten Little Allergies it is.  Only they aren’t little.

Cue the drumroll and call me Ryan Seacrest.   If this were live TV we would cut to a a commercial.

And the allergies are: Beef, chicken, soy, milk  & dairy, egg, almonds, walnuts, oat, corn, and white potatoes.

No, you cannot go into a restaurant and ask for a beef-free, chicken-free, milk & dairy-free, egg-free, almond-free, walnut-free, oat-free, corn-free, white potato-free menu.  Apparently they don’t have those.

It has taken me a week to process this.  I’m a weird anomaly that doesn’t react right way.   When Reid was in the NICU, I was freakishly calm despite the circumstances.  Last Friday, the allergist was trying to gently break the news and offer support, fearing crazy female drama.  I calmly nodded and smiled. It might have been a scary smile. Then the introductions began…

Hello, elimination diet.  Hello, dietician.  Hello, eating at home.

Goodbye, Chick-fil-A.  Adios TCBY.

Hello, there are too many allergies to remember and I am his mother.

Hello, notebooks full of dietary terms and ways to cope.

Hello, scary support group where people talk about tube feeding and elemental formula.

Hello, raise awareness walks and rubber armbands.

Hello, $200 grocery bill.

Goodbye, triple coupons.

I’m all about the positive spin people.  I can be the ray of sunshine on a cloudy day.  I’m just not quite there yet.

I keep holding fast to the life boat which is that we have our answer.   Of course, this “disease” has more questions than answers but I’ll take it.  We know.  We can do something. 

I just need to have my pity party first.

At least there is some humor in this situation.  Yeah, the boy can have wheat.

-Erin

 

 

 

 

 

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