Rare Disease Day 2021

 

Our daughter was diagnosed with a very rare disease in 2007. She was noted by John's Hopkins as the 31st case in WORLD. With such a low number of cases it was disheartening but also made it easy to find other families who had been diagnosed. 

ROHHAD SYNDROME 

After our daughter battled cancer we had to take on ROHHAD. 

What does ROHHAD mean?

Rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation

What is ROHHAD Syndrome?

ROHHAD is an acronym for rapid-onset obesity (RO) with hypothalamic dysregulation (H), hypoventilation (H), and autonomic dysregulation (AD). It is a rare, life-threatening syndrome that affects the autonomic nervous system (which controls involuntary actions like breathing and your heartbeat) and the endocrine system. As the name suggests, the key features include dramatic weight gain over a six- to 12-month period in the first 10 years of life, followed by hypothalamic dysfunction, dysregulation of the autonomic nervous system, and alveolar hypoventilation. Children with ROHHAD appear to have normal growth, development, and general health prior to onset of symptoms. The cause of ROHHAD is currently unknown.Treatment varies based on the signs and symptoms present in each person.

(Please see rare disease on the NIH website)

How the heck did we find out about ROHHAD and have our daughter Diagnosed?

After three years of misery and a hospital in CA almost killing our daughter with anesthesia that we now know should not be given to ROHHAD children we moved to Maryland to save her.

https://www.hopkinsmedicine.org/news/articles/with-complex-cases-come-synergy-and-serendipity-diagnosing-rohhad

 After months of Dr. Cooke (endocrinologist) running tests on her we found the cancer and he started working with Dr. Paz-Priel in Oncology. Without them we would have lost our daughter. 

https://www.hopkinsmedicine.org/news/articles/the-mysteries-of-rohhad-with-pediatric-endocrinologist-david-cooke

Check out the TV show Mystery Diagnosis and our fight to be diagnosed. Haven is still going strong. 

https://youtu.be/m92K8hItup4

Donating her hair!!!!  Thanks everyone for your support over the years. 

Avocado Fries!

So.  Trying to mix up the dinner for our keto eaters that can't eat fries I found an amazing recipe on a blog by The Holderness Family. You should really check their videos out on YouTube!  Absolutely hilarious. Helps with Covid!

Anyway. I changed up the ingredients slightly to use almond flour instead of regular flour. Added a little bit of spice. These were so good.  Definitely recommend!  

 

Keto House

I know there are lots of keto houses out there....we're one. Well....mostly one. 

Haven is die hard keto.  She knows how many carbs or sugars are in every ingredient. 🤓 

Kris is 95% keto....he had a quesadilla in Arizona while hunting. 🤫 So back to fasting for his cheat day. 

I eat whatever I can swallow - esophageal dilation did NOT work. Waste of $500!  

Rohnin doesn't like meat....she may have been switched at birth. 🤷‍♀️

Weston is extremely picky but definitely loves smoked meat. 👍

The photo above is my cheat way to make "keto" pizza for Haven and Kris.  I really get tired of making sure I've got a great dinner planned. Especially when everyone eats something different. 

First I buy a Quest pizza crust....then add lots of protein and usually spinach. This one was onions, cheese, Klamata olives, garlic, and boar 🐗.  I love this because it allows my keto eaters to have pizza on Saturday when the two little ones have Domino's. Of course, Rohnin is cheese only and Weston is pepperoni. So it's two pizzas.  🤣

Anyone else have quick cheat keto recipes?  I'm in need!  

 

Happy 100th Birthday GiGi

 A super HAPPY BIRTHDAY happening this week!

Great Grandma (GiGi) Bist is turning 100!!!!  We're so excited to celebrate such an amazing birthday. 🥰

We wish we could visit. It's been so long!  I have photos from our visit right after Weston was born. 

Haven and GiGi.  2012

Baby Weston 👶

Little miss Rohnin and even Deezy got to join in on the fun. 

We love you Grandma!  We hope you have a wonderful birthday  🎂🥳🎉

Scooter Close Bro

Kevin Barkley

1974 - 2021

Wow. I never expected to receive the phone call I received on Valentines Day morning. Your sister called me, I've never talked to her in my life.  Instantly I felt my heart being ripped out. Every word was a blur after she said you passed away. 

But I can still see you smiling and laughing when I close my eyes. There is no way you can be gone. A song in the grocery store made me stop and smile because I felt it was you.

We had just talked last week. We were talking about Kendall being a mom, you wanting to make sure her husband knows he's lucky, and that old man Kris is a grandpa. 

We've talked many times about my sister passing away in 2019 suddenly from cancer. That destroyed me. Now you have gone. 

You were Kris' brother. You were closer to him than anyone for over 30 years. In 1999, you invited me into that family and you will forever be my little oldest brother. 

So many laughs. So many cries. So much craziness. 

I'll never forget Arrowhead 1999.....packed up like Red Dawn and screaming at the moon with the neighbors. 

In 2001 we all moved to Corona. We coined the term scooter close. We vowed to always be scooter close. In my heart we always were. 

I just want to share some memories. You always loved my scrap books. 

1996 - all the rowdy boys at it again.  I have this photo framed. Such an amazing bond right there.

Always making everyone laugh. 

You were always very protective and made me feel like a sister. We could tell each other anything. No judgment. You have and always will be my true best friend. I don't make friends very easy but you were the exception. 

In a few months from now I will have been married to this man for 20 years. We never could have imagined with our backgrounds of divorced families that we'd last. Having you be in our family and still watching over us was crucial. 

This....the three of you...were the backbone. I could never have asked for better friends and a stronger support system. 

New Years Eve.....shooting arrows down my hallway. Omg...thanks for reminding me of that the other day. Oh....setting your jeans on fire on my balcony.  Only to wake up and find just the metal in burnt ashes. 🤣😂🤣  Thankfully you were scooter close. 

This picture says everything. All of you are my heart. The biggest group of crazy brothers I could ever want. 

Getting up early and snowboarding all day. I never would have even tried it if you hadn't convinced me that catching the front edge is cool and fun. 🤣

My toast to you Barkley. You were one of a kind. You already knew you were forever in our hearts. I'm so happy I have had the last 22 years to know you and love you. 

Scooter Close Bro. 🥰

Pickling leads to Sprouting

 So....with the new mindset of not relying on stores (for everything) and an overabundance of eggs we started pickling. We pickle everything now....onions, pickles, eggs....as much as we can.

Well...then pickling led to sprouting. Now I sprouting everything. It started as a way to give the chickens healthy treats.  Now we eat them with everything. The below was my first go at lentil sprouts.  

When you sprout lentils the phenolic content  increases by a whopping 122%. Phenolic compounds are a group of antioxidant plant compounds that may provide anti-cancer, anti-inflammatory, and anti-allergenic properties. 

This is day one.  After soaking overnight and rinsing in the morning we have small tails sticking out. 

Day 2...you can see the sprouts really pushing their way out!

Well....Day 3!  I'm getting very excited. PS: Flaxseed sprouts did not go as well! 🤣

Moving into Day 4 was a big jump. Plus I hide them in the pantry so they stay in the dark. 

So now we're getting into the final day. I move them to indirect sunlight to allow them to turn green. 

Oh yeah!  Ready to eat. These little babies are filled with protein and vitamins. Great especially when you can't garden in the winter!  

Not too shabby. 

Chickens Chickens Chickens

 COVID-19 made 2020 almost unbearable.   Almost. 

Remington came to live with us right before my birthday. 

My niece was born!  Isn't she a beauty. 

Then...I became a chicken mom.  Seriously. No one would have ever thought I'd love and snuggle chickens. Not even me. I was terrified of them when we first got them. No clue what we were doing. 

We went to Cal Ranch for dog food and bam...I suddenly have 6 baby chicks. We talked with the guy at Cal Ranch for a very long time. I wanted nice chickens. I got two Sapphire Gems, two Americaunas, and two Buff Orpingtons. 

Their feet were so creepy to me.   The kids took constant care of them while we had to work to keep Bella away. 

Finally after living in the basement for about two months they were ready to move to the big house!

We got our first eggs!  Sunny lays the absolute biggest eggs. 

Sadly we lost Cheeks shortly after. She flew over the 4 ft fence right in front of Bella. We were driving back from Moab and Haven was home alone. 

The only photo I have of Cheeks. 

Now I'm almost one year in on raising these chickens. Learning as much as I can. I finally after 45 years have a true hobby I love. 

Our new fur baby - Remington

 Oh...2020. What we didn't know on New Year's Eve of 2019!

In January I was still traveling. Our team went to Denver for the Outdoor Retailer show. Then the first week of February we went to Magic in Las Vegas.  Life was still normal. The second week of February I had a full hysterectomy. With cancer genes running pretty strong in the female line of my immediate family and my history of endometriosis and fibroid it was best to eliminate the unnecessary!

Somehow I was able to get my hubby to agree to let me have a new puppy. Of course we only stick to one type of dog...terrier.  Not shedding is a requirement. Luckily we found Remington. 

We waited until May to get his first haircut. 

He joined our family so easy. He just fell into the groove.

On August 19th I was at the hospital with Haven getting her IVIG treatment when I realized my phone was turned off. Kris had called five times. So I called him back and he was in a panic at the vet. Remington had done something- still not sure what - and broke his arm. 

Like really broke it. By the time I got home he was back and wrapped up in a cast. 

We took such good care of that arm for about 5 weeks. When we thought he was getting the cast off and would be going again.  We were wrong. The vet came in and showed us his unwrapped arm.  The bone was working its way through his skin and almost exposed. He had to have the arm amputated. I was beyond devastated. 

Well. We were sure how he'd learn to walk or potty. Potty time was the hardest. After a couple of days helping him he was really wanting to do it himself. 

Now he's just a normal, crazy, playful pup. He had his first birthday last weekend. He enjoyed smoked boar for dinner and some yummy treats and toys. 

To say he's spoiled would be an understatement because he still gets handfed. He's amazing. 

Happy first birthday Remington!!!

Starting Back Up

 Starting the blog back up after being away for many years!  Looking for something to get my thoughts down on and memories to look back at!  Excited to get this started!