Word of the day? REMISSION

Word of the day? REMISSION

We’ve been MIA since school has started, with only a few updates via Instagram. Sorry about that!

I swear that we’ve been busy, I haven’t been just sleeping in while the kids are in school. I mean, I have been, but other things have been happening, too. In the past few months, we have made some changes in Hank’s care team. We’ve switched to a new Gastrointestinal doctor as well as a new nutritionist. Choosing to leave our previous office was based on the want for additional information and care, as well as, recommendations from our local EOE social media family.  

When we made the change, I don’t know what I thought would happen. Did I think that a new doctor would have all the answers that the previous one didn’t? Like maybe there was new information and studies that I hadn’t heard about that the new GI knows about? Maybe I did. But she didn’t. The new GI sat down with us and explained that we were already doing what was needed for Hank’s care. But that it had been too long from the last scope, so lets schedule that, shall we?

The scope was done at one of the area children’s hospitals and it was night and day, our experience from the previous facility. From the care of the team, to additional child advocates, to even having toys for the kids (even Dave!) to play with while we were there. The waiting area was another amazing place. My experiences from the previous place were PEANUTS! PEANUTS EVERYWHERE! To now, no one was allowed to bring in food or drink. Signs were everywhere about how their tiny patients were fasting and for their sake, no food or drink were allowed in the waiting area at all. It was mind blowing.

BUT WAIT! THERE’S MORE!

The procedure took the same amount of time as it usually does, for reference, it was the blink of a lazy dog’s eye. Seriously, it is a really quick procedure. We met with the GI and her resident and got the most amazing news.

HANK’S ESOPHAGUS LOOKED LIKE A NORMAL ESOPHAGUS!

I ugly cried in the waiting room. We had never seen a “normal” esophagus before. Like, ever. We were given the pictures and I couldn’t stop staring at them. There was a polyp, but if the Dr wasn’t worried, then neither were we.

Waking for Hank after being sedated has usually been an awful experience. I have talked about hearing him crying before finding him. However, this time, he woke, asked for juice and was hazily watching a movie when I got to his recovery area. No tears, no crabby – just wobbly. It was amazing.

Later in the week, I got the call about the biopsies. Polyp was nothing. Sweet! The eosinophil count was (wait for it) not of significance. Like, there were none to even give me a number count. Do you know what this means? It means:

HANK IS IN REMISSION!

Right here, in my celebration, I am stopped and asked, “Wait, remission? But this isn’t Cancer….” Or “What in the hell? He can have remission? What does that even mean?” “Is he CURED?”

No, it isn’t cancer. Yes, he can go into remission. Sadly, no, he isn’t cured. What remission means for his disease, is that he still has it, however, it is not currently active. He hasn’t had a flair in months and hasn’t been in pain for the same amount of time.

So, he’s in remission. What comes next? The food challenges! A very scary time of trying out foods that we have already decided, through testing and “try and see” methods, to see if we can bring any back into our menu. So, my friends, first up is SOY. Will there be puke? Will Hank be covered in a rash? Will soy prove to be no match for my little boy? Find out next time, folks. Same Hank blog, same Hank webpage.

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Smells like PSL

Smells like PSL

It’s the FINAL COUNT DOWN, do do do doooooo… do do dododooooooooo!

I have new school clothes on order, I have backpacks in the process of being washed to a like-new state, I have lunch ideas being saved on Pintrest. You know, those meals that Hank won’t eat? Those would be the ones. BUT, I will not feel bad, I am feeling high on life. WHY? Because we’re in the final count down for the new school year.

I love this time of year. I can almost smell the black leggings and feel those cozy pumpkin spice lattes on my legs. Wait. Reverse that. Or not, hell, I don’t care. I’m just too excited!

It isn’t that I don’t love summer. I mean, I don’t, but I don’t hate it. I am an introvert. BIG TIME. So during summer, these kids get a whole bunch of me and not a whole bunch of planned activities. Last summer, I decided that the kid fighting had to stop and that “Next year, they will go to a camp”. So, this summer, they did!

There is a local summer camp that looked like a lot of fun. Mud pits, soccer, animal learning centers, building; you name it, they have it. I was determined that each kid would be signed up so that they get a break this summer and the chance to have fun outside of the home. Bonus to me, it would be at a place where I don’t have to make small talk with other parents.

I signed Dave up for Soccer. He was such a fan for the game BEFORE he went for a week, running, maybe getting the ball and not being the player that he thought he would be … never having played before. He has asked to go back next year, and named three other camps within this one that he would like to do. Done. No prob, Dave. We’ll camp it up.

Hank got a week of animal adventure camp. We received a day-to-day (almost) weather report as to whether he was having fun.

First Day After Camp!

Monday: Mom! It was so cool! I know someone from my school!

Tuesday: *before camp* I don’t want to go. Don’t make me go.

*After camp* It was ok, I guess. Do I have to go back?

Wednesday: MOM! LOOK AT WHAT THEY GAVE ME! *He came running out with a white shirt waving over his head like a flag. Before we even got to the truck, little dude has his shirt off and it stuffing his noggin through the neck hole of the camp shirt. *

Thursday: *Before camp: small, angry camper who doesn’t understand why he can’t wear his new camp shirt to camp. I explain that he wore it half a day, spilled lunch/dinner on it and then refused to take it off for bed. He changes*

*After camp* Tired. Ran a bunch. Saved some imaginary animals. Hungry.

Friday: *After camp* MOM! There was a hotdog eating contest and I won! (no, he didn’t. The camp councilors had a competition and it was amazing to watch)

I personally liked the camp. They checked all ingredients for food activities and rather than making him an odd man out when it was determined that he was allergic, they moved him in with another group and he got to experience more of the camp than he would have. Imagine that. He went to a camp and didn’t feel left out. He actually felt like he had an advantage over the other kids in his group. My goodness. That was an amazing feeling. It was an amazing experience.

So, I’ll say it again. Next year, these kids are going to camp. Only this time, they are going for longer and maybe at the same time. AT THE SAME TIME. Nerf camp, animal camp, maybe building camp is in their future. Pedicures and coffee for me. Coffee. Maybe a cup of that Pumpkin Spice that smells so good.

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Mom! Are you awake?

Mom! Are you awake?

“Let’s talk about sleep, baby. Let’s talk about you and me. Let’s talk about all the good dreams and the good Z’s that we need. Let’s talk about sleep. Come On!”
Please tell me that you read that to Salt N Pepper’s Lets ‘Talk about Sex’.  Even if you didn’t, PLEASE tell me that you did.

 

Seriously, let’s talk about this elusive thing called sleep. I remember it. It was 10 odd years ago when I had my last real restful sleep.

When I was pregnant with Dave, I kept thinking that in just a few months, I’d be able to sleep again. Without the bulbous tummy that I was working against.

Then, when Dave was 6 months old, I thought: Ok, just a few more months and then I can have sleep. He was getting up super early and falling asleep at about 9pm. Surely, that couldn’t last. Right?

But when he was older, we had our fears confirmed. Dave was an early riser. A VERY early, 4 or 5am, early riser. The hubs and I never have been early birds. Nope, we are night owls. It HURTS to get up before the sun. We learned that if we tried to sleep in a bit, something always happens. And not a good thing. Like the one morning, we woke, to find a grinning Dave sitting in the hallway. The walls, carpet, doors, dog and Dave were covered in the yummy scents of fancy soap. Soap that was set aside for a holiday gift.

But it is ok, there are nap times. Right?  ”Nap when the baby naps!” Right? Yeah. No. We woke one nap time to the doorbell. The little thief had gone through my purse, gotten my car keys, went out the garage door and into my car, where there was a new toy. It was waiting for the afternoon. Sadly, the garage door locked behind him and he couldn’t figure out the house keys. It was winter. He was in jammies and no shoes.

And this is my easy child.

Hank, however, does not sleep. Like, ever. He comes down nearly every night just after bedtime. His tummy hurts. His tummy says that it is hungry. He saw a spider, maybe. He heard a noise. He saw a light. He can’t sleep. He doesn’t think that it is bedtime because it is still light. His tummy needs something.

Even if he doesn’t come down minutes after bed, chances are, 3am, we see him. At this hour, it is all about his tummy, his throat or he just needs a drink and a cuddle.

During a flare up, there is no sleep. Sure, maybe 10 minutes here and there. Or even a half hour. But for days – sometimes up to a week – there is no sleep for Hank and I. Sometimes, we even get the hubs up with us, but that is reserved for when I am covered in vomit. Though, this happens a lot more than I will even hint at.

Hank’s first year of school was hard. Very hard. Earlier, I wrote about the germ factory, getting sick and having a flare up at the same time made it really hard. Weeks and weeks of no sleep. Weeks and weeks of vomit. Weeks and weeks of middle of the night crying, both babe and me.

The non-sleeping kid does have the occasional benefits. I won’t be telling this to Hank, but I love mornings when I wake up to him snuggled in with me. His soft snoring, his tiny Hank feet wedged into my back or belly. It is seriously a wonderful snuggle. It is also a snuggle that I’m trying to break him of. He already sleeps mainly in his chair, should he need a bed, he has one. But, man. Those snugs.

As I am typing this, I actually got a fairly decent night sleep. Well. Without kid interruption. At 1:30 this morning, our new dog, Libby snored so loud that she startled herself awake and covered up her embarrassment by pretending to protect the house. With barking.

As Hank gets older, he may be able to wake, get his food/drink or whatever, but it looks like I have doomed myself to 15+ years of waking for Libby. Someday, sleep will come back to me. When it does, I’ll sleep through the alarm clock.

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Wing Walking at 10 Feet Tall

Wing Walking at 10 Feet Tall

Who is your super hero? Who do you look to when your bravery is at an all time low? I look to Hank. This child goes into doctor appointments more bored than scared. He looks at strangers like obstacles to avoid, not because he doesn’t know them, but because he just doesn’t have the time to deal with them. In his mind, he is 10 feet tall. Everything he does, he is 10 feet tall. Well, unless you ask him to clean up a tissue that he threw to the ground … Then suddenly, he is a wee baby, unable to walk.

Last week, I decided that since it was just too hot to think, the three of us: Hank, Dave and I, would go to a local beach while the Hubs was at work. We packed up, got breakfast and headed out the 30-minute drive to a beach on Lake Erie. When we arrived, we staked out our section and I started blowing up the inner tubes. The floaties? I don’t know what to call these. While I was doing this, I watched my boys. There is Dave, the older one, who sticks his toes in and waits patiently for me and his flotation thingy. Then, there was Hank. He was out in the water to his knees and was working on going farther. Neither boy has learned to swim. One has always been water shy and unwilling. The other only recently learned that he even likes water.

We have had very warm, sticky weather so far this summer so I was looking forward to bobbling around in the water with these kids. When I got in, Dave stayed where he could stand with the water reaching his waist, which was hugged by the floater. Hank, however, wearing his floater around his chest, kicked his way to where I could just barely touch the mucky sand. As we floated and bobbed around and Hank worked on his kicking, the sun reflected off the water and the small birds fought off larger ones, I really noticed the difference in my kids.

When Hank was young, I called him ‘Wing-Walker’. He was brave as a baby. He wanted to walk, wanted to get around on his own, wanted to climb, wanted to jump off of things. He was the kid that you would hear, calling for help because he got stuck while trying to climb up the fence of the backyard, looking for his personal freedom. All animals became friends and all wanted a pet. He walked into scary situations, like an operating room, like it was just another day in the wonderful life.

Dave has always been more reserved. More serious and not one to run off. Staying safe and in his personal bubble has kept him happy and that makes us happy. I often say that he is my easier child. Which makes his brother… a handful.

While I was trying to sink my toes into sifting sand, Hank was trying to get past me, out further into the lake. Dave was calling to have us come closer and Hank was asking me to trust him. He was going to be fine. He was fine; not because he was 10 feet tall, but because, he is too young to ride on the wing of a plane. And he is too young to float to Canada or drift to Ohio. I had to cap his bravery at 5’3” and that still made for a lovely day. He’ll have to get to Canada another time.

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Drama Llamas and the Heat

Drama Llamas and the Heat

A totally less fun post here, it has been a crazy few weeks with many drama filled decisions. For example: after two years of sharing a bedroom and a bunk bed, the boys will be separated this summer, back into their own rooms. We are looking for less drama llamas over every little thing that comes from being with another person practically 24/7. Bigs is excited to have a quiet, restful place where he can close the family out so that he could read Captain Underpants for the 40th time. Smalls is offended that Bigs needs that quiet time and is only excited that his mini fridge and lazy boy will be brought into his own room. Neither is excited that we refuse to keep the bunk bed.

As we’re looking at what we need to do this summer as well as what we want to do, life is, of course, throwing in wrenches into the mix. We want to make sure that we’re spending enough time out of the house, in the sun and doing fun zoo trips, hiking, u-pick farming, bubbles and trampolining. But, life pops up with a resound NO. Last week, Hank’s class went to a local farm. He. Had. A. Blast. I wasn’t able to come and chaperone, but several friends were, and I received pictures and texts, “He’s already told me that he can’t feed the cows because he is allergic to dairy!” And “He asked me if he needed to be on the watch out for eggs, because he is allergic.” But, still, he came home with a swollen eye. But since he’s Hank, he could only talk about riding a horse, petting a cow, feeding goats. Not that he couldn’t see and his face was running with grossness of snot and tears.

Friday, my smallest dude complained of being hot and heavy at school pick up.  It’s Michigan, so yeah, it was 80 degrees. On the way home, he fell asleep in the car. At home, the thermometer measured 104.1 degrees. He was dry, hot and lethargic. He had full blown heat stroke. Together, my hubs and I – fully clothed – stood in the shower, taking turns holding Hank, while lukewarm water sprayed his burning skin. He screamed, kicked and vomited. A call to the nurse’s station at the doctor’s office told us to keep doing what we were and only if he doesn’t respond – take him to the ER.

We talked to him, asking when he started feeling ill and he started talking about feeling too hot in Art class. That the class room was so warm, that he was feeling sleepy. The scary part of this, he hadn’t had art that day. He had lost a full day in his memory.

We did the shower another time with almost the same results. Wet clothing, but no vomit. We filled him up with cold drinks, plopped him in front of the T.V. with a fan trained on his back. Soon, he turned bluish as his body cooled down, but his temperature kept fluctuating between 100.4 and 99.1.

That night, he fell fast asleep. Not once coming back down for additional food, not coming back down in the middle of the night for snuggles. Just a log. I checked on him in the middle of the night, and that kid was out so hard, he was drooling. The next morning, he was fine. Warmed from sleep but lacking a high temperature. He spent the day, quiet, playing with this brother and watching TV.

The trampoline stood silent and will as we take it easy for the next week or so.

This week, Monday was the last Monday of the school year and while standing in line, waiting for the door to his room to open, he tells me that he was very cold. How long does it take to recover from heat stroke? A while.

Remember, water, shade, light and loose clothing.

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Rare, pshaw. Hardly!

Rare, pshaw. Hardly!

According to Apfed, Eosinophilic Esophagitis, a RARE DISEASE, affects 1 in 2,000 people. So, in the city of Ann Arbor, MI, where there are approximately 121,000 people living, we can hypothesize that there could be 60 people, who have eoe, walking through that college town of only 28.7 square miles.

That is the most math I have done in quite a while, please don’t expect that of me again.

 

So what is my point with all of this?

My dudes (yes, I talk like this in real life and yupper, I am nearly 40), we’re not alone. None of us are. Last week, I received a message through one of my social media platforms. It made my day, that someone came to me with questions. This young lady was freshly diagnosed and, rightly so, was distressed. It was a relief to her to find our story and to find someone else with this link. Hank may be rare, but he isn’t the only one in the neighborhood! So, how do we go about finding others in our same boat?

Social Media: Through Instagram, you can find other families like mine. Families that document their daily lives and struggles, triumphs and wins. Head over to Facebook and not only can you also find us, you can join support boards that cover the world, your state or possibly your county, province or city. And if you can’t, you can start your own! Connect with these families, engage in conversation, ask questions. I have found that most people will answer your questions and lend support. So, ask away!

APFED.com: I love this group, here, you can find local, volunteer-led support groups. This page will also connect you with their online support group.

Your doctor: Who better to know of your local resources than the men and women who are helping you navigate this situation? Ask there for suggestions as well. The bonus here, is that they may be able to recommend a therapist for better one on one support.

I, personally, respond to all (appropriate) questions that are sent to me and usually have the time to dedicate for a conversation. I am not an expert and I don’t sugar coat our experiences. But I am also available for an extra shoulder.

 

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Yum! I hate it!

Yum! I hate it!

Food trialing is an interesting endeavor. Not only are you trying out new foods and companies for allergens or cross contamination, but you are also trying to gather more food for the family menu. We’re one of those crazy families what will not make separate meals for everyone at the table. We will, of course, leave off a component if there is an issue; Dave hates pickles – no problem, Hank has issues with tomato sauce – not an issue, Hubs refuses beans – leave them off. But we sit down to the same meal.

The hardest part of trialing, I feel, is when there is a new food that Hank can eat and likes. We buy it, he loves it and we make it apart of the menu, whether it is a snack or a meal. Since I hate to waste money, I will buy when I find items on sale, or when I can fill an Amazon Pantry box. But that also means that I may buy more than just one to make sure that we have it in our “stock”. You see where this is going, yes? You know what is going to come next? When, and only when, I have more than one box in my stock, that is when he decides that he doesn’t like it. Thus, causing me to eat it myself, or store it to try again or donate.

Right now, I have 4 boxes of carob granola bites, 6 bags of everything free Hank-safe stuffing mix, 4 carob suckers, two bags of “new” beef jerky and three boxes of cereals that he liked and rejected. He really likes to stick with what he knows and loves. We re-introduce these foods a few weeks later, but maybe 80% of the time, dude rejects them again.

Last week, I took the remaining box of muffin mix from Enjoy Foods, we started with 6, and tried them again. The first time, I had used a donuts shaped tin and coated them with cinnamon and sugar. He loved them. The one time, that is. I had made them again and he refused. I have added carob chips, blueberries, brown sugar crumble and he has hated them all. For this batch, I added two bananas, a cup of mini carob chips and three tablespoons of SunButter. HE ATE THE WHOLE BATCH. So, as I am a creature of habit, I already have another 5 boxes in my Amazon Pantry box, ready to do this all over again.

The best advice that I have, if you are going through the same thing, is to not get frustrated (SNORT). Eating for him is hard and he only eats so much in a day, so, slow and steady progress. We go on binges every month or so, when we go to the grocery and scour the aisles for food that is Hank-safe and then present it, very scientifically, for him to try.

We sit down as a family and watch food programs, not to frustrate anyone, but to learn what other people are eating. I assure everyone that we can figure out how to make the meal taste close to the original, as long as everyone understands that I am not a professional chef. Bizarre Foods is a family favorite, even if it does sometime turn my stomach. Sorry, Andrew Zimmern, but at times, you are cray –even if Hank thinks you are amazing.

Once I have pressed “Save” on this, I am going to start this week’s grocery list and I think that I am stuck this week. Throwing back to the menu planning post, what are you having for dinner this week? Because if I’m not careful, we’re going to have a meal of bugs and blood stew…

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Crouching Allergens, Hidden Tree Nuts

Crouching Allergens, Hidden Tree Nuts

I am bad at remembering things – all things. I have to look and relook at name tags, ingredients list, instruction manuals. In fact, when Crouching Tiger, Hidden Dragon was released in theaters, it was renamed Crouching Tiger, Hidden Treefrog by me; THAT I could remember. Because I can’t remember anything, I have to make sure that I research multiple times, everything, that comes into my home, because hidden allergens are everywhere. EVERYWHERE. Wheat in PlayDoh, sesame in lotions, orange oil in soaps, soy in tea, barley in “natural flavoring” … the list goes on and on. The hubs and I have to read every ingredient list for every consumable product that comes into our house. Grocery shopping for new foods takes forever and we still have to double check products after we buy them, just to make sure that we aren’t unwittingly grabbing something that we thought that we properly cleared. To be completely upfront with the fact that I am not an expert, nor a robot, I have on many occasions posted to my local mom group with bags of free food that I realized too late were processed on shared lines.

When Hank started Kindergarten, I worked with his teacher to come up with an alternative to Playdoh. After a messy mess and another sticky gross maker, we did find this recipe from Parents.com that worked well. Held its color, shape and didn’t leave a horrid mess on the work station.

We have taught our children to look at the soap in public bathrooms. Typically, if the soap bottle has a picture of an orange on it, I have found that they use orange in the product. However, since strawberries are more expensive, manufactures tend to use an artificial scent. I have read on my support boards that several families carry a plastic baggie with safe soap in it. Not even a hotel will be safe; we stayed at a hotel this past summer where the shampoo and lotions had sesame oil in them. We didn’t use them, but I side eyed everything in the room that could have come into contact with it.

I drink a lot of decaf chai tea and have a particular brand that I am very fond of. However, after Hank asked for a sip (AND I GAVE IT TO HIM) I realized that I never checked, but I figured that it would be safe. This is never the case; it won’t be safe just because you think that it will. Always check before giving anything to your allergy child. I found that Bigelow tea uses soy lecithin in some of their teas to help disperse tea through the cup.

Even at the dentist, you need to always be your child’s mama and papa bear. We couldn’t get a clear ingredient list on the polishes and fluoride used in the dentist office. For his safety, Hank gets plain ol’ flavorless pumice for his cleanings. The best part of him never having the bubble gum flavoring? He doesn’t even know that they exist! We have a great family dentist. So great, in fact that they met with the manufacture representative for their fluoride supplier. They, on their own, walked though all the ingredients and rejected their standard order as it contained an ingredient that could trigger a reaction to those allergic to nuts! They switched to make their office safer. Near tears that made me. You can read more about the connection here.

If you have bought a product in the past that was safe, it is always recommended that you reread the ingredients before buying it again. Companies can and do change out ingredients. And unless you enjoy giving foods away like I apparently do, check new foods from trusted companies. That elbow noodle may not share a line or a facility, but their lasagna noodle may…

To read more about common hidden allergens, take a look at this article on The Journal of Allergy and Clinical Immunology.

 

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