2019 thinking back

I am sitting here anticipating a root canal later this week, the second day of the new year.  After that we will hopefully be ready to finally head south after a stop in Kansas City to spend time with friends. 

This year started with root canal as well.  But this year also started with an elbow still in a cast recovering from surgery for a shattered radial cap and ligament damage.  I knew the recovery would take time because this was my second radial cap replacement.  I’m now “bionic” in both elbows according to my boys.  This was a detour from the plans I had made to travel south for the winter.  We would now have to stay near Omaha for physical therapy and follow ups with my surgeon.  

It was not ideal for our first winter living and traveling in the RV full time, but we would make it work.  Thankfully I was able to stay at my sister’s house for the first month after surgery since I couldn’t drive yet.  As soon as I could drive we headed out to Omaha.  We discovered that Mahoney state park has a bathroom and shower house that is solar so they keep it open all year round.  This made winter camping much easier since we were dry camping to avoid freezing damage.  Mahoney also plows their roads and several sites regularly.  This was a good thing because we weathered some blizzards and lots of snow.

The boys enjoyed snowball fights, fort building and climbing trees just outside the RV.  Just a short drive away was the sledding hill behind the activity center.  We hadn’t anticipated being north for the winter so we had no sleds.  We tried box tops, a couple of broken sleds we found and finally the only kind of sled I could find still available at the store, lunchtrays.  These worked ok when you did it just right, but mostly the boys crashed or fell off, but they had a great time.  We spent a couple of different days at the indoor play area, but this did not prove to be a favorite for them like I thought it would.  

Their preferred indoor play space was at the SAC air and space museum next door.  I bought an annual pass since I knew it would be a great place to visit when the weather was bad.  Even when the wind was too bad to drive anywhere else we could go to SAC because it was only about 200 feet on the highway before turning into the parking lot.  During the year they learned about airplanes, World War II, and spent lots of time at the play area.  Their favorite was the huge building blocks.  

We spent some time exploring the rest of Omaha and Council Bluffs as well.  They loved going to the zoo, but unfortunately my zoo pass would only get us half price instead of free.  Looking back I think it would have been a good idea to buy a zoo pass.  The boys asked to go to the zoo often, but we didn’t because it was not cheap.  My Wild North Carolina pass did get us into the Lincoln Children’s Zoo for free as well as the Omaha Children’s Museum.  These were fun and we will return in the future.  We checked out other places like the Squirrel Cage jail (only 3 story one left), Union Pacific Railroad Museum, and Lauritzen Gardens (when the stinky flower was getting ready to bloom).  We also explored playgrounds around the area and did playground reviews for our Youtube channel.  We also enjoyed our YMCA membership swimming any time we got a chance.

We did not explore as much as I would have liked because it was a cold winter and after a little while the furnace decided not to work unless we were plugged in so the RV would get cold quickly.  We also were busy with doctor appointments.  I started with three physical therapy appointments a week for my elbow.  We established the boys with new doctors.  This is not as easy as it sounds.  Both boys have Ehlers Danlo (EDS) which affects almost every body system.  So we have to find doctors who are familiar with EDS or who are willing to learn.  After a year of talking with people in our local EDS, POTS (Postural Orthostatic Tachycardia Syndrome) and Tourettes groups we have managed to find doctors for almost all of the specialties.  For a few it took the whole year to find a good doctor. 

I also found a good physical therapy and occupational therapy group for the boys.  They worked with therapists to strengthen their core and other muscles in many different ways.  Their favorite new therapy tool we discovered is the vibration plate.  They enjoy using it and it helps to stimulate muscles so it is good for them.  It is a win win so I will be buying one soon. 

In the spring we set out to Des Moines for an anticipated enjoyable summer.  I was to work at Adventureland in exchange for pay and a place to stay at the campground right next door.  Unfortunately the family I had arranged to monitor the boys while I was at work had a family emergency and were not able to stay.  The work in the park was not difficult, but it was long hours on my feet in the heat.  Meanwhile we made friends with a new family and exchanged babysitting, but we soon figured out that the campground was not friendly for workcampers with children.  We were constantly on pins and needles that the boys would do something wrong like ride their bikes on the grass.  I finally decided that I could make the same amount of money with much lower stress by increasing my hours teaching English online with VIPkid.  We headed back to Omaha.

More exploring the area and more therapy for me and the boys.  The boys invented Slorking, a special kind of quick sand mud fun.  When he needed to rest Shayen built Lego mecha after Lego mecha.  He even displayed them at a brick fest. We explored streams and woods and hiked when it wasn’t too hot.  Rethan got to go fishing and learn from fishermen he met. 

Living in the RV and spending time outside was having benefits for the boys.  The therapists found that they were getting stronger.  With Ehlers Danlos it is harder to build muscles and it is also more difficult to maintain muscle mass.  A little exercise all the time was working for the boys.  They could walk, bike, do their stilt walking and lots of other outdoor fun, but have the RV right there for when they got tired.  RV living was physically helping them. 

I finished the year with a new therapist in the fall.  Her specialty was soft tissue work.  This helped the pain in my arm go down and I was able to straighten my arm further than before. With using my arm I am hopeful that it will gradually straighten to almost normal like my other arm has.

Also, this fall I was diagnosed with Connective Tissue Disorder Not Otherwise Specified.  I am also being followed for Sjorgen’s Syndrome.  The doctor said it is likely I have it. He said that even if we did the punch biopsy test to confirm it for sure it would not change the treatment so I opted not to have the painful procedure.  He will follow me as though I have it.  Shaynen also got a new diagnosis.  He had Tourettes Syndrome added to his list of chronic conditions after an EEG to rule out seizures.  

I was also noticing improvements in boys’ stress levels and how well they were getting along.  Without the stress of a traditional school every day the boys had more patience for each other.  They still fight and feud as brothers do, but generally it has been much reduced this year.  We often work together to figure things out and talk things out.  I have been trying to following the advice of our neurologist and use the strategies from The Explosive Child.  It has helped a lot.  

We have made many new friends this year.  We have also spent some time with old friends and with family.  We like the adventures and traveling, but also enjoy reconnecting with life long friends.

Now as our first full year of living in our RV is drawing to a close we are eagerly anticipating a newer bigger RV for our adventures.  It is currently in the shop getting last minute little glitches ironed out.  The newer (1999) RV will have a separate bedroom in the back so I won’t wake the boys up when I’m teaching.  It has more space inside including a real couch instead of just the dinette to sit at.  It also has much more storage space outside in the basements.  After living in our current RV the newer one will feel so big to us.  

We are going into the new year with plans for exploring further from our home base.  Our plans for the next year include a general itinerary that will take us south for the winter.  We will work our way slowly across the south.  Then we will head up the east coast stopping to see family along the way before we visit a friend in Vermont and Maine.  Then during the summer we plan to travel across the northern states back toward Chicago to visit a friend there before returning to Nebraska for family events and medical appointments for some time before heading south for the winter again.  

Leave a Reply