Rocks Along the Path: More of Asher’s Journey

Comments 6 Standard

More doctors’ visits means more info. But more info doesn’t always equal more answers. Sometimes it means more questions and confusion.  Sometimes it means solutions and some times it means a long windy road that is headed slowly, but surely to the right place.

After what seemed like forever (it was really just 6 weeks–but that IS forever when you’re waiting for information about your child) we had an appointment with her Gastroenterologist (GI).

The 6 weeks leading up to the appointment was a rollercoaster ride and I held my breath the whole time.  Some days were great and she would eat things we weren’t used to her eating like a waffle.  Then there were days where she would choke and throw up or she would spit food out instead of swallowing it.  I took careful notes of everything that she put into her body and every symptom she had.  I meticulously measured medicine and set timers so that we were executing our care plan to the letter.  The idea was that she was supposed to just be getting better and better but it was very up and down. So by the night before the appointment I was so eager I could barely sleep (story of my life–any kind of excitement keeps me up all night).

After the doctor carefully listened to everything I had to say he determined that she had been on the steroids long enough and that it was time to address the foods in her diet.  He determined that she needed to begin her elimination diet.  He removed; milk, eggs, barley, corn, potato, and turkey from her diet.  Because these ingredients are in the vast majority of foods (think corn syrup etc) he determined that she needed to start drinking Elecare Jr (a hypoallergenic medical food/formula) to help meet her nutritional needs.  The idea is that we remove  these triggers and then scope her again in 2 months.  If the scope is clean we know that we weeded out the trigger.  Next she will add one food back at a time until we determine which food it was causing the irritation.  IF she doesn’t scope clean in 2 months than we remove more and it’s time to see an out of state specialist.

img_8802

He was kind enough to have his dietician come in and give me heaps of information and a few recipes.  I picked my jaw up off of the floor (from shock) gathered all of the samples for formula that I had been given and headed to the car.  I had mixed feelings.  I felt all along that it was important to talk about her diet, but I wasn’t ignorant to the fact that these new changes would make feeding her particularly difficult.  I called my husband on the way home and let him know the uphill battle we would be facing.  I wanted to get straight to work when I got home.  I started a list of things that I needed to find a safe alternative for.  I needed a safe yogurt, milk, fruit snack, granola bar, cereal, and bread.  I headed out to the grocery store determined that I was going to meet this head on.  After all I’m a notorious “jump in with both feet” kind of girl.

What I met head on was a brick wall.  I was reduced to tears in the natural foods section of the grocery store and I realized that I could not feed my child, at least not easily.  What was I going to do?  She still had wheat BUT since she has to give up barley it can be difficult to find flour that hasn’t been”enriched” with wheat.  The most surprising difficulty I ran into was corn and potato.  Corn and potato starches are used often in vegan, gluten free and allergy friendly foods as a thickener. Which meant I couldn’t buy her vegan cheese or egg replacer.  Every where I turned I seemed to be land locked by allergens or triggers.  I gathered a few items that were safe and with much disappointment and after spending WAY TOO MUCH I made my way home.

The next few days were rough and filled with anxiety. I woke up with breakfast dread.   Feelings of panic anytime any of the kids were hungry (which let’s face it– is every 37 seconds during the summer) guarding myself against a melt down that I felt sure would ensue the first time we had to tell her that she couldn’t have one of her few beloved foods.  She is doing so well.  It honestly seems to be effecting me more negatively than her.  We’ve had a few moments of her being upset about not being able to have something or saying “But I like popcorn” but for the most part when we tell her a food will make her boo boos hurt she just says “ok”.  The hardest night came when I was trying a new safe chicken tender (from scratch) made with safe ingredients.  They didn’t turn out right.  Now usually if I wreck dinner (which is surprisingly rare–considering I can wreck a lot of things) I would order a pizza or throw the kids in the car and go get Chick-fil-a but I dawned on me that I couldn’t do that. All I could do was get more groceries and try again, but at the time my husband had my van and his car isn’t big enough for all of the kids. It was a panic moment for me and that’s when I reached out to a mom who has been there and done that when it comes to EoE and I simply typed “I can’t feed my child” and she knew exactly what to say to help me and even offered to meet with me the next day.

Today has been a good day.  I have taken it minute by minute snack by snack and meal by meal and gotten through it.  I know soon I’ll look back and laugh at how dramatic and frazzled I am right now and all of this will become second nature, but right now it’s hard and that’s okay.  It’s allowed to be hard and it’s allowed to suck and I’m allowed to be mad and sad and scared.  All of that is okay.  It’s all part of our story and we’re doing our best.

If you’re wondering what I’m doing with all of my eggs and milk check out this post…What Do You Do When You Can’t Use What You Harvest? Is it Time to Sell the Farm??

What Do You Do When You Can’t Use What You Harvest? Is it Time to Sell the Farm??

Comments 3 Standard

img_8804-1

As I’m sure you’ve read in the last post The Last Baby is Gone we are officially kid free at the homestead which means we’re getting all of the milk.  Toffee is an excellent producer she gives me about a half gallon each day.  We are literally swimming in milk (okay figuratively, we are figuratively swimming in milk).  I have gallon upon gallon in my fridge.  The chickens have slowed down a bit.  Mostly because a ton of them went broody and I also think the heat has a role to play in it.  I went from getting 12-14 eggs a day to getting about 6.  But they’re still laying regularly enough that I’m not having to buy eggs.

img_8784

I’ll admit the garden isn’t producing the way I wanted but we do have watermelon and cucumber coming in steadily.  Did I mention there is even a tiny little lemon on my tree?  I know I’m no gardener and I won’t even pretend to be.  The garden suffered this year (as it does every year at my hands).  I’m praying that my potatoes still have life left in them when it’s time to turn out those pots. (How to Grow DOZENS of pounds of Potatoes in a Laundry Basket)

But overall everything was going well.

Then the bomb got dropped.  Then Asher gets her diagnosis (Asher’s EoE Journey) and the GI doctor says “no more eggs, dairy, barley, corn, potato and turkey”.  SHUT THE FRONT DOOR!!  I Said to him “BUT I BOUGHT A GOAT” he thought I was joking “NO REALLY I KNEW MY KIDS DIDN’T DO GREAT ON COWS MILK SO I WENT OUT AND I BOUGHT A GOAT.  I MILK 3 GOATS EVERY DAY!  I HAVE GOATS”  So what am I going to do?  Is it time to give up my dream and sell off the live stock and be *gasp* normal?img_8782

Yeah right! Me? Normal? Absolutely not.  But that doesn’t mean that the early morning walk outside to milk the goats isn’t a little more painful knowing that it isn’t really getting used.  So what am I going to do with all of my bounty?

Use Some- Asher may not be able to have dairy (cow or goat at this point) and eggs but the rest of us still have to eat and I want a good healthy source of milk for my family.  Asher was the main user of the goats milk, but we will get some use out of it.  The eggs will definitely get used as well.

Share Some- There are plenty of people asking me about eggs.  Some times there are so many people who want eggs the chickens can’t keep up.  I am more than happy to share our plenty with others.

Feed the Livestock- Rhaegar loves a nice fresh warm bowl of raw goats’ milk with his meals.  The chickens adore slightly spoiled goats milk.  Any eggs that get too old for my liking go right back to the chickens and Rhaegar (not that we hardly ever have extra ones hanging around).

Make Soap- My son has horrible eczema and I’ve really been getting excited about the prospect of starting to make goats milk soap.  I haven’t yet gathered all of the materials and knowledge but you can rest assured that I’ll bring you along for the ride.

Stop Producing-   Lastly I’m going to stop producing so much.  The last 4 meat birds that I have are the last that are going to be processed.  I’m in a busy season of life and I don’t want to add one more side dish to my plate right now.  So once they are processed that’s it for awhile.  I also will probably stagger breeding this year so that I only have one or two girls in milk instead of all three.

Homesteading is about providing good healthy food for yourself and your family and I feel like I’m doing that, but I don’t want to produce so much just for the sake of doing it that I becomes wasteful.  I also don’t want to just stop doing it because we hit this health bump in the road.  This isn’t a road block it’s simply a detour.  We’ll be back to easy cruising shortly.  Thank you for bearing with me.

Happy Flocking!

 

The Last Baby is Gone

Comment 1 Standard

It’s official…we are kidless here at The Broody Bantam. The last baby of the season has been sold.

Mama Toffee is just about done crying from missing her baby (my other mamas never cared). She gave a very full quart of milk this morning and definitely wasn’t empty when she became restless of getting milked.

It just not the same without babies here. We’re already thinking about the upcoming breeding season. This is new to us because we purchased all of our does pregnant. I’ll be looking into bucks and making sure my ladies are healthy enough to be nice and fertile.

If anyone has any advice on starting a breeding season please let me know. This season we had one twin birth and two singletons. 3 buckling sand one doeling. Hoping for all twins this next time around.

Happy Flocking!!

Asher’s EoE Journey

Leave a comment Standard

When you find out something is wrong with your child you automatically get in to “go mode”– you’re ready to jump in head first and do whatever you need to do to “fix” it, and you want to do it RIGHT NOW!  So this journey has been hard for me because it’s a lot of waiting, and honestly I’m the least patient person I know.  After getting her diagnosis the GI told me to come back in 6 weeks to discuss it, in the mean time I’m to work with our allergist to determine possible food triggers.  We did initial blood work that didn’t prove helpful and then she told me to come back in 3 weeks to do more skin testing.  6 WEEKS!!! 3 WEEKS!!!  I might as well have been asked to hold my breath the entire time. I want to know NOW, but sadly that’s just not how any of this works.  This has proven to be one of the biggest lessons in patience for me.  You know what they say, “When you pray for patience God gives you plenty of opportunities to be PATIENT”.  It’s been 4 weeks and in some ways it’s getting easier knowing that we are getting closer to finding out more, and in other ways waiting is getting harder because I have read every possible article and blog and watched every “Journey Story” on YouTube.  I’m just dying to find out information specific to her diagnosis and treatment.

So to pass some time I would like to share with you the journey of discovering that AJ has Eosinophilic Esophagitis (EoE).  The diagnosis itself is pretty new so we’re still learning bits and pieces, but I can share with you how it all began, how she was diagnosed, what has changed so far and what’s next.

Where it all began…

When Asher Jolie was born she was absolutely perfect it seemed.  10 fingers, 10 toes and big bright eyes.

img_8588

She took to nursing immediately and was a breastfeeding champ.  Presumably all was well.  Eventually they came and took her down the hall to go to the nursery to get some things done and be looked over while I took a shower and got set up in my post partum room.  Being my fourth child I wasn’t overly concerned about her being away from me in the nursery–after a few kids you learn to enjoy the time that other people are taking care of your baby and get all the rest that you can get.  But soon one hour turned into a few and I needed to know when my baby was coming back to my room.  A doctor that I hadn’t seen before came in and said that AJ hadn’t passed her meconium (baby’s first poop) yet and instead of stooling she was just vomiting and that she was being admitted into the NICU.

img_8591-2This was a HUGE blow to me for two reasons: 1.) MY BABY WAS GOING TO THE NICU and 2.) I had been on bed rest with all three of my prior pregnancies for threats of early labor and she was the first baby that didn’t really threaten to come early and SHE is the one who lands in the NICU…weird.  AJ would spend her fist 6 days of life in the NICU.

img_8590-1

They couldn’t find any obstructions or intestinal underdevelopment to explain her problems, she just kept throwing up and having difficulty feeding.  It was chalked up as reflux and she was released as soon as she was gaining weight and able to hold down majority of her feeds.  She nursed fine at home, but did seem to suffer  from silent reflux issues; swallowing constantly, loud breathing, needing to be laid elevated, having milk constantly kind of running out of her mouth.  When she was about a month old (maybe a little younger) I was taking her older brother to a doctor’s appointment and her breathing was so LOUD that the doctor stopped the appointment to check on her.  She wasn’t in distress this was simply how AJ sounded.  She informed me that AJ had Laryngomalacia (floppy airways) and that the reflux was making it worse.   She was put on Zantac to help alleviate the symptoms.

We were getting fairly comfortable caring for AJ’s silent reflux although the symptoms didn’t seem an better we were happy that she didn’t seem to be in pain like most reflux babies we heard about so we counted our blessings.  Eventually it was time to start introducing solid foods when she was around 1, up until this point she was eating baby food well.  Although (at that time–she later outgrew it) she did have a milk and egg allergy (nothing that we weren’t already familiar with). That’s when this happened:

She loved food and she would try so hard to eat it. She would chew and chew and chew, but she just couldn’t swallow.  This went on for months!  I would take her to the doctor and they agreed that it was strange, but this was also during a time period where she had recurring strep throat, so it was being chalked up (and reasonably so) to it hurting to swallow due to strep.  I was given a “GI Symptoms” log to fill out for 4 weeks.

So after months of trying Prevacid for her reflux and tracking symptoms, AJ was seen by a GI doctor who suggested that we have some tests done.  She underwent a swallow study…NORMAL.  She had a gastric emptying test done…NORMAL.  But she still couldn’t swallow foods that weren’t the texture of her baby food.  So her GI doctor decided to perform and endoscopy with biopsies.

Her first endoscopy came back showing reflux damage, but only a few eosinophils (there should be none, but it wasn’t an alarming amount and was within negative range).  After this first endoscopy was performed we were told that it still seemed to be just reflux and to continue on with our current medication protocol.

A year passed and during that year AJ still had reflux symptoms but she wasn’t spitting out her food anymore.  We were excited that she stop spitting we didn’t take that time to realize that the only reason she wasn’t spitting anymore was because she had STOPPED eating any solid foods at all.  She was surviving solely on pureed foods.

At some point during that year she had a severe bout with asthma and was hospitalized and put on a daily Flovent inhaler (Flovent is a medication used to treat asthma, but is also used to treat EoE) it helped with her asthma and also seemed to help a little bit with her eating.  She could now consume pureed foods, fruits, and some other odds and ends.  But still not as much as she should be.  At this point I realized that it’s not “normal” for a three year old to eat only baby food and went back to see the GI again.  He also agreed that this was not normal for her age and wondered how bad her reflux was.  So he decided to do a PH probe (see the measuring device in the picture below.) I was still skeptical of other issues going on and talked to our allergist about it.  She suggested having him to another endoscopy with biopsies (since he was already going to be in there) and see what’s going on.

The results came back saying that the PH probe was negative for overwhelming amounts of acids, but her eosinophils were positive.  He believe that we should move on with a diagnosis of EoE.

I remember hearing those words and going through a roller coaster of emotions.  I remember being excited for a diagnosis and having my smile fade and going “that’s not the one I wanted… I specifically didn’t want THIS diagnosis”.  He had told me prior that there was a fix if her acid levels were too high, but I had been made aware through people I know and research that EoE can be quite complex and quite brutal in some cases.

He prescribed her a swallowed Pulmicort (asthma medicine) slurry that she would use as a topical steroid for her esophagus–imagine if you could rub ointment on your esophagus.  Then he suggested that I follow up with some allergy testing to determine what foods we may need to remove from her diet.  Here’s the trouble with that, my kids are notorious for not showing much on tests even if they react violently to the actual food.  But in general allergy skin and blood testing are typically not terribly accurate for EoE triggers, so it’s like trying to find a needle in a haystack. We are still on this portion of the journey,  this is current.  We have NOT yet determined what foods will be coming out of her diet–if any.  We are still in the process of testing and hypothesizing.  I am keeping a daily food log and symptom tracker.

img_8298-1

AJ goes to lots of doctor’s appointmentsimg_8474-1img_8476-1

And sometimes she doesn’t feel very well.

But we are extremely blessed because this disease can be HORRIFIC and right now AJ’s disease is very mild.  We are praying that it stays this way.  That HUGE dietary/lifestyle changes do not have to be made.  That we can let her be as “normal” as possible.  We pray for all of the families effected by EoE, many of which have children on tube feeds or elemental formula only with no foods.

Navigating dietary restrictions due to IgE food allergies is very familiar to me.  I’ve been managing food allergies sense I was 4, but THIS is different and has me feeling quite anxious to know what the future holds.  Thanks for coming along with me on this journey.

Happy Flocking.

Sorry I’ve been MIA we have a New Diagnosis…

Leave a comment Standard

I just want to apologize that I haven’t been blogging lately or making videos but I needed some time to regroup and get life back in order.

My sweet little farm helper got a new diagnosis from the doctor and it is more than I was expecting. AJ has Eosinophilic Esophagitis (EoE).

“Eosinophilic esophagitis (EoE) is a chronic, allergic inflammatory disease of the esophagus (the tube connecting the mouth to the stomach). It occurs when a type of white blood cell, the eosinophil, accumulates in the esophagus and persists despite acid-blocking medicine. The elevated number of eosinophils cause injury and inflammation to the esophagus. This damage may make eating difficult or uncomfortable, potentially resulting in poor growth, chronic pain, and/or difficulty swallowing.” (Source: APFED)

In regular people terms it’s kind of like an ongoing internal allergic reaction that causes eating to be difficult for her.

There was a time in AJ’s life (from September ’16 to May ’17) where Asher couldn’t swallow any solid food. She would happily chew it and then spit it out. She was still breastfed during this time so she maintained her weight but she was 2 years old breastfeeding around the clock (every hour) like an infant. I knew she had reflux but she was on medication so we tried to chalk it up to her being a stubborn toddler (because let’s face it she IS a stubborn toddler), until I saw her repeatedly trying and trying in frustration to swallow and she physically couldn’t (this is called dysphasia). That’s when we had our first scope. I just knew she had EoE but lo and behold she didn’t have enough eosinophils to confirm. But acid damage was noted so we continued with acid medicine.

Over the next year she eventually weaned and she stopped spitting out as much solid food. The notable piece of information here is that she started becoming increasingly picky choosing to eat only soft foods. So she was swallowing all of her food but her diet was very soft. She is a three year old who lives on baby food, oatmeal, scrambled eggs from her favorite chickens, and apple sauce. So when it seemed as if her reflux was getting worse we tried the scope again and a Bravo PH study to see how bad her reflux really was. This is when tests come back showing that she does in fact have EoE.

Of course we got our diagnosis on a Friday evening and I just had to sit with that over the weekend. Waiting and worrying what was in store. (Little known fact: I am the least patient person I know) Would we have to start a stringent elimination diet immediately and reduce her diet down to nothing and work back from there? Would she tolerate this new medicine? There were so many unknowns swirling around my head.

So I did what I do best. I researched. I reached out to people I know (or know of) that have a child with this condition. I prepared lists of questions for our specialist appointments. I prayed. I worried, I stayed awake. I felt guilt that I had been “poisoning” my daughter with something she is undetectably allergic to for goodness knows how long.

So bear with me here while we navigate the new murky waters of upcoming lifestyle changes. I’m more than a little nervous for testing to come back and find out what foods we need to avoid.

I know that this isn’t homestead related but I do plan on keeping everyone updated on how my littlest farm helper is doing.

Thanks for your patience.

Happy Flocking