Beginning the Journey to Wellness

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Saturday, September 15th

Asher is all buckled up and ready to go. Could she be any cuter? No, I didn’t think so!

Saturday morning rolled around and I had been awake for a few hours with anticipation, but I purposefully procrastinated in bed because I knew the more time I had to kill the more antsy I would become. I volunteered to go get breakfast, stopped to get my eyebrows waxed and even took my mom’s trash to the dump before running my actual errand to Tractor Supply to get hay and straw for the goats. Breakfast arrived back home to my starving husband at about noon.

All I knew was that I needed to stay busy and keep moving. Road trips don’t exactly sit well with my anxiety in my old age and this one was gonna be a doozy. So I spread fresh dry straw in the goat house for impending rain (thankfully we avoided the hurricane). I carefully organized the different animal feeds so that my oldest daughter and mother in law would have an easier time feeding the farm. I hauled water and loved on goats, chickens and dogs until it became apparent that I was stalling so I went inside to pack last minute items and clean the house.

When the clock finally struck 2pm (our intended leaving time) I laid on the floor with Lilly and said my final goodbyes, gave Rhaegar a pep talk about guarding the house and I went out to the car. 2 more quick “run ins” into the house to gather left behind shoes and waters tumblers and we were off…well off 5 minutes down the road to drop off the big kids. I gave them each 5 days worth of love and then we were off…for real this time.

Hubby took the first and longest shift of driving and the trip was surprisingly smooth. The most fun part was through the mountains of West Virginia. Such a beautiful and under appreciated state.

Believe it or not we only stopped three times for the potty. One of those potty breaks was also when we stopped for food. It’s so strange to go to a restaurant outside of your normal stomping grounds. It feels bizarre without that home field advantage. AJ did wonderfully throughout the entire trip. She didn’t cry or complain one time. We expected that she would sleep the entire time but she stayed up, perfectly content, until 9:07pm. What a trooper. Originally the plan was to stop for the night in Charleston, West Virginia and then do the last leg of the trip on Sunday, but Philip and I both felt strongly that we didn’t want to take her through two days of travel and that between the two of us we could get through the 8 hour trip just fine. We arrived at our hotel late that night and all got a great nights sleep.

Sunday, September 16th

We woke up with two surprises for Asher. These adorable baby deer pajamas, and a framed picture of her siblings that we left behind to bring her here. An experienced friend told me that it was very important to “bring her siblings along” and I’m glad that I did.

We got up this morning determined to get our bearings of this city (we are country mice for sure) and to set up our hotel room as home base. We went to Target for food and supplies and the stopped for Panera (we made AJ safe oatmeal back in the room). It spoke well to my sensibilities that there was a Kroger, Target and Panera close by to make me feel at home. After lunch it was time to explore. We found a beautiful river walk that had a playground where AJ could let some energy out. There was a splash park and a Ferris wheel. I think everyone in the world knows my fear of heights makes me especially hate ferris wheels but anything for my kids–so I rode.

We had a blast. Cincinnati is a beautiful city with a lot of neat things to offer, but oh there is no place like home. I like my slow paced town over the hustle and bustle any day. City driving is my worst nightmare.

We slowly made our way back to the hotel for hotel tacos because when you’re traveling for medical reasons you want to save every single penny. Eating out every meal for a week is simply out of the question.

After a good meal, lots of play/cuddle time and a bath Asher is all tucked away and bed ready for tomorrow. In fact everyone is sound asleep but me. My mama brain can’t turn off. I’ve been wondering, preparing and most of all praying about thing to come in the following few days. We’re hoping for a new plan. Something that will bring ease and comfort. Honestly those may not be realistic or attainable for use right now (ease and comfort) but we drove 8 hours for a reason. We want the very best for our daughter and nothing will stop me from fighting.

Thank you to each and everyone of you who have reached out to us with kind words of hope, support and prayer. I promise to keep you all updated in the days to come. I hope to shoot some footage for a video but I may be too busy. We’ll play it by ear. If I don’t get enough footage I may just make a sit down discussion video to update everyone.

I should go off to sleep since I need to be up in three hours. Be on the look out for updates.

Happy Flocking!!!

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Let’s Add a Hurricane in for Good Measure

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hurricane florence

So as if I wasn’t preparing for enough with our big trip to the children’s hospital coming up it turns out we have a hurricane headed our way.  Now I will admit I am no good at preparing for inclement weather.  I’m much better with snow (so if the power goes out the cold foods can survive outside) but no power during warm weather is NOT my forte.

So here’s what I’ve done to prepare so far:

  • Bought a flash light and lantern
  • Bought bottled water
  • Bought charge packs for our phones

To prepare the animas:

  • making sure everyone has enough food
  • Securing shelters
  • Cleaning shelters
  • Removing projectiles from the yard
  • Making a safe back up space in case things get too intense

We’ve are supposed to be having rain all week so that makes it really difficult to prepare the animals.  If it comes down to it I will put the goats inside of the shed, which will be messy, but it is what it is I suppose.  For the chickens I will lock down the coop if necessary and make them all stay inside until the danger passes if that’s needed.  Rhaegar will be safe inside the sunroom if he chooses to stay out or he will come inside of the house.  Let’s just pray none of the top heavy pine trees fall on our house or car.

I still have to go to the grocery store to get bread for milk sandwiches (that joke will never get old).  But seriouslyI do need to go to the grocery store to get safe snacks for AJ during the storm and regular snacks for the rest of us.  Praying that we don’t lose power and it’s just some wind and rain.

Please keep us in your prayers.  If you are in Florence’s path stay safe and as always Happy Flocking!!!

Setting out on a Big Adventure

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Take the time to read the poem above and mull it over. When you have a baby you ” know” what to expect, you expect a trip to Italy, but when your baby is born with a condition you aren’t expecting you crash land in Holland without a map, no tour guide and you don’t speak the language. I am so fortunate that AJ is so healthy in so many ways. I’ve also been blessed enough to find a tour guide, a sweet friend who has walked this journey ahead of me.  I am so grateful for each and every one of these step ups along this path.   It’s been a tough summer, especially August and that leads us to the next leg of this journey…our next big adventure.

During this summer AJ started to have more symptoms; difficulty swallowing, choking (with or without vomiting), decreased appetite and weight loss.   Currently her GI has her off of solid foods all together.  You would think that for a child with a decreased appetite that it wouldn’t matter whether they could eat solid foods or not, but BOY DID IT EVER.    She lived off of apple sauce.  It got to the point where the hubby and I would take turns eating dinner.  One of us would sit down to dinner with the other kids while the other one was on distraction duty…

…when it was my turn, that meant safe drinks at Starbucks and walking around Target until well past her bed time.  We limped along and did as much as we could until we got to this point.  The point when feeding my own child became a full time job and sometimes (many times) I failed at that job.  I tirelessly documented every morsel that went into her mouth and every symptom that she had.  I spent hours researching feeding methods and spent my days testing them out…anything so that she’d take another bite.  FINALLY we were given an appointment by the Cincinnati Children Hospitals EGID clinic.  We are counting down the days until we can meet with some of the top specialists in the country and get a better game plan for AJ.  We’re looking forward to it like a vacation.  And we plan on taking you guys along on the journey.  I will definitely write a post about it and I’m hoping there may be a video as well depending on how hectic things get.

It’s more than an 8 hour trip, and the evaluation is 4 days, but we jumped at the chance.  She was due for another endoscopy anyway so this was perfect timing.  They will be doing the procedure at Children’s so that the top doctors can see for themselves what is doing on instead of reading what has been interpreted by two other people before them.

We haven’t even been there or met them in person, but just by our conversations both via phone and email I know in my heart that it’s where we need to be.  They really seem to understand that there is an emotional component to not being able to consistently feed your child.  They understand that it effects the whole family and that it isn’t always as straightforward as it appears. I received these reassuring words in an email:

“There absolutely is an emotional part of it. We are made to nourish and feed our children. We’re even built that way. So it definitely affects us if that doesn’t happen the way it should. It’s hard.We understand that. And you are the best advocate for your child. 🙂 “

So be on the look out for new posts.  I’m hoping to post some about preparation for leaving and battening down the hatches at the homestead for while we’re gone and then updates about my little farm helper along the way.  Thank you for continuing to be patient with me, I realize that I have been slacking a lot with posting and now really posting about the homesteading topic much anymore, but this diagnosis has really been all consuming.  If you missed the diagnosis you can learn more here: Sorry I’ve been MIA we have a New Diagnosis… , Asher’s EoE Journey , and Rocks Along the Path: More of Asher’s Journey .

Happy Flocking!

Feast or Famine on the Farm

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I’m just going to say it…THANK GOODNESS that we don’t depend on our hobby farm for our survival.  1.) Because I am a horrible gardener and we would have no fresh produce if it was left up to me to produce it.  2.) During the early spring we went through a time of plenty. Eggs and milk were abundant.  Peas were falling off of the wines everywhere I looked and I even hade enough bounty to give away.  Fast forward to the harsh heat of the summer and my chickens and ducks on  strike and molting.  I’m lucky if I get an egg a week.  The garden has gone to the weeds and completely dried up and my watermelon and cucumbers have all died.  My potato harvest was paltry and in all honesty the only thing that’s growing is a volunteer tomato plant from a seed I dropped.

Also life got so busy and hectic with AJ’s diagnosis and condition (Rocks Along the Path: More of Asher’s Journey ) that I got too busy to butcher my second batch of chickens and I ended up giving them to a friend who had more time than I did.

We lost a lot of chickens this spring and summer and things have over all be a little rough on the farm.  I’ve been more consistent training Rhaegar lately and the chicken deaths have stopped.  The other issues such as fencing and the poor garden yield was mostly due to me being stretched so thin that I was neglecting different areas like weeding and mending.

But I’m honestly NOT discouraged.  Even though this years garden yield was poor I know it’s not because we have poor dirt or horrible vermin issues, it’s simply because I neglected it.  So I have plenty of hope and faith that next growing season will be better.  There were definitely rocks along our farming journey this grow season, but there is still plenty of room left to grow.

How did your farm do this summer?

Happy Flocking!

Rocks Along the Path: More of Asher’s Journey

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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.

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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??

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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.

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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!