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  OUR LIVELY TRIBE - RV Remodeling
  • Home
  • Renovation Tours
    • #12 Betty the JayFlight
    • #11 Evo the Rental
    • # 10 Jayco White Hawk
    • #9 2012 Jayco 5th Wheel
    • #8 2009 Keystone Hideout
    • #7 2010 Keystone Raptor
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I'm Erin, the mama of this tribe. 
I live with 5 boys ya'll! Pray for me.
Once in a while, I try once a week, to get on and blog.
Sometimes it's about travel, sometimes it's about family,
sometimes widowhood, sometimes trailer flips,
​sometimes living with 5 boys.
No matter what it's about, it's always about our life.

Yesterday was a good day

1/27/2018

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Our first full day back in the trailer on our second leg of this adventure and it was a good day. In fact, it was a great day.  I yelled at the kids less than 10 times. That sure makes for a good day. Our first sleeping night was on the shore at the Salton Sea. Although Ive camped nearby this area so many times, bringing out dirt bikes and quads to ride into the desert, I had never been near the Salton Sea, other than the one time I rode my quad a little too close and sunk into foot deep mud. Yea, but the shore camping on the east side is awesome. It really felt like this ocean was laid out before us. It smelled like it too. Although this is not water you want to play in, let alone touch, the view made up for it. Sunsets were amazing. The kids enjoyed the weird shore line, other than the time Jake slipped off the coral like shoreline rocks and scratched any part of skin on his body that was showing. Dead fish covered the shore, so we stayed back. The view tho! The view. School started off better as well. I only refocused the boys 45x rather than 100+. Afterward, they played on the skateboards outside behind the trailer, beyond them the highway and beyond that, the train tracks. (Don't worry, this was all very far off and not nearby). It was quiet and serene and beautiful. Travis and Trenton went out and bough solar panels so we could dry camp, boondocks, more often and dinner was okay too. That night, we taught the boys Phase 10 and it was quite funny. Game night is still not a regular thing in the trailer, but without electric to run the tv, game night it was. Needless to say, mama is kicking their butt. 

It was a good day. If every day were like this, our travels would never end. Heres to many more good days.
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Packing up and moving on

1/25/2018

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Whats it take to pack up and move every few days? Travis and I have a pretty good routine. Watch our latest YouTube to find out!

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Traveling with a chronic Illness

1/22/2018

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We've shared a little about our Jakers and his KT Syndrome, but so many have asked, what is KT Syndrome? Is he okay? So, the best way for me to share, is to blog about it. Our middle son Jake has something called  Klippel-Trenaunay Syndrome (KTS). Link is attached. KTS is a lymphatic and vascular malformation. To put it in non medical terms, he basically has a ton of extra lymphatic tissue, too many blood vessels to manage and cysts throughout his abdomen. KTS is treated symptomatically  meaning when he spikes a fever, we go into the hospital, when he has pain or bleeding, we go to the hospital, if he isn't acting himself, pale or mama is concerned, we go to the hospital.

He was born in 2010 and we knew from ultrasound he was going to have some sort of malformation on his leg and bottom area, what it was, we were not for sure. When he was born, his right leg and bottom were larger than the other. He had 3 little blueberry colored toes and several port wine stains (birthmarks) on his bottom and leg. He was kept in the NICU at Loma Linda University in Southern California for 9 days before the doctors realized he's okay and sent us home. The next few years were followed by several infections, clots, laser treatments and lots of hospital stays. During this time, I also lost my husband, Jakes Dad, in a motorcycle accident. (I'll save that for another time.)

When Jake was 3 1/2, he was admitted for 2 weeks at Rady Childrens Hospital in San Diego. This was his longest stay and this mama bear was not about to be sent home without answers. They decided to start him on a trail medication that was heard to have slowed down the growth of his leg. We were released on Halloween, 2013 with a home IV and nurse visiting for the next 2 weeks. To our surprise, the medication worked. Before we knew it, we hit 3 months, 6 months and then 1 year without a hospital stay. The medication began to control the growth of the lymphatic tissue and lessen the pain he felt. He became more active, happy and better all around.

Overall, Jake will deal with his KY Syndrome for the rest of his life. How does it affect him today? He is quick to get more tired than other children, his heart is pumping so much blood through his body, that he wears out more. Hence, the reason for the wheelchair. We can be out for longer periods of time when there is a lot of walking. The wheelchair also helps because on days he is in pain or uncomfortable, we don't have to hold off visiting the zoo, we can all still go and enjoy ourselves. 


How do we travel with Jake and a chronic illness? When we first decided on this adventure, we didn't want Jakes medical stuff to hold us back. We knew he could do it, and if it didn't work, we'd come back. I travel with his medical file and the knowledge of where a hospital is in reference to where we are. I have his doctors number on speed dial, hematologist, dermatologist, urologist and his pediatrician. So far, so..... I don't want to jinx anything. Each time we come home, we visit doctors, take care of blood draws and make sure he's healthy. Are we anticipating a bump in the road? We are always prepared for it. 

Hes a tough, stubborn kid but my hope is that it makes him a stronger more well rounded man one day. 

Feel free to ask questions! 
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Same bed, New surroundings

1/12/2018

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When we first moved into our tiny home for this adventure, I worried about creating stability for the boys. Would it be strange for them to sleep in a new place each night? Would they be worried or scared or confused or not feel like they were "home"? Quickly realized that our tiny home, with the curtains shut tight each night, was the same place they were sleeping every night. We are all crawling into the same exact bed, the same comforts of home, surrounded by the same 4 walls, sleeping under the same heavy blankets that make someone feel the safest. 

Travis and I often crawl into bed at and quickly wonder where we are. Are we on the beach? Are those ocean waves we hear? Did we bring in all of the food? Are there bears in this area? Are we surrounded by redwoods or are we in the middle of a desert? Are we in my parents driveway? We have these same feelings when we wake up each more also. Where did we just sleep last night?

It's an odd feeling, but also a feeling of such freedom. Where we can decide the surroundings beyond our walls of our tiny home and be anywhere. 
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Grief + a new year

1/1/2018

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New Years are always a bit haunting. After feeling the loss of a loved one, New Years Celebrations can bring on a  new meaning. It's a bit of a fresh start, a feeling of, "this year is going to be better than the last." Last year sucked, you lost someone you loved. Someone you spoke with every day, someone who made an impact on your life, maybe it was your spouse or father, your sister or your aunt. When you lose someone you love, a New Year comes along with a bitter sweet feeling, a heavy heart, it's never a big celebration. On the first New Years after I lost Steven, I believe I gave 2011 the middle finger. I hated 2011 with every single inch of my soul. I rang in the New Year's on my best friends couch with my kids scattering toys all over the place. Actually, I rang in the New Year at home in bed because we left their house and drove back home before the clock struck midnight. I was grateful 2011 was over but terrified as to what 2012 would bring. New Years sucked that year as I adjusted to my new normal. An only parent with two little boys who were ready and wide eyed to take on each and every day. As for myself, my eyes were closed and I was wishing every day didn't feel like such a nightmare. 

Fast forward 6 years and I am still here. Still taking on each day. I have learned to celebrate each New Year again, never without the thought of Steven in the back of my mind and how it's another year he's not here to watch his boys grow, celebrate their achievements and teach them all they need to know about cars. I take in each New Year with a ton of gratefulness, a full heart and an appreciation for this moment, for today, for the loved ones I do still have around me and the immense amount of love I have with my now husband. You face each New Year not with a heavy heart, but with an appreciation and understanding that each and every moment is a gift. 

For those who grieve this New Year, my heart is with you. Know you will be okay. Your memories of your loved one that is gone will become fond memories. This last year will be the year of hurt and loss, but this next New Year will be full of adjusting to your new normal. You will be okay, I promise. And in those moments you feel you are not okay, know you are not alone. I gotcha. 

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How I felt about 2011
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    Erin
    Mom x4 boys, wife, widow, entrepreneur, traveler and dreamer. 

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  • Home
  • Renovation Tours
    • #12 Betty the JayFlight
    • #11 Evo the Rental
    • # 10 Jayco White Hawk
    • #9 2012 Jayco 5th Wheel
    • #8 2009 Keystone Hideout
    • #7 2010 Keystone Raptor
    • #6 Jayco Jay Feather
    • #5 Class A
    • #4 Class C
    • #3 2007 Trail Bay
    • #2 Jayco Eagle
    • #1 Jessie Wrangler
  • RV Rental
  • FAQ
  • About Us
    • Reviews
    • The Shop
    • Merch
    • Podcast
    • Landscape Photos
  • Contact Us
    • Consultations
    • Waitlist Inquiry
    • Review us!
  • Blog
  • RV Product
  • Join our tribe!