Post Transplant Update Week 21

Today Ben had his first CMP or (Comprehensive Metabolic Panel) come back all within normal ranges for the first time in over 5 years!!  We couldn’t believe it!  He continues to improve weekly.  He’s still on high steroids to prevent rejection, which causes body swelling.  They are slowly tapering him down, but as I’ve said before this takes months. He suffers from periodic headaches and hand tremors but otherwise is doing great!  

We finally purchased him a car in preparation for him being here in Ohio on his own for a while.  The bad news... they aren’t going to let him be in Ohio on his own.  We found out at our appointment on June 17th that I have to stay here until Benjamin gets to go home to Utah.   This was very very difficult for me.  We were always under the impression that I would be able to go home once he was stable enough to live alone. My heart is torn between Utah and my family who needs me there, and Benjamin who needs me here.  It was a rough time for me.  We are both going home for a visit in July.  It will be a trial run for Benjamin.  If all goes well when we get back to Ohio he’ll have a small surgery and if he continues to do well with no signs of rejection or complications from the surgery, we will both get to go home to Utah to live in late September.

All of Bens appointments with the Team have been virtual.  It’s crazy how Covid has effected everything so much.  It’s also amazing the things we can accomplish thanks to technology. 

I sometimes have to remind myself that I am not in charge.  I’ve said it before but its worth repeating Heavenly Father is in charge.  In just a few weeks we will hit the two year mark of our time here in Ohio.  We have seen miracles and blessings in abundance and we couldn’t be more grateful. 

 

A Walk to Remember

Gully Brook Metro Park:

Ben and I spent June walking!

We both took up walking to find release from the quarantine.  I found myself walking every evening while Ben went for his walks in the morning.  Sometimes we walk together but usually on our own.  I discovered that walking is good for my soul.  It helped relieve my stress and worries..  We both enjoy the solitude of walking.  Put on your headphones, play your favorite music and lose yourself in your thoughts. Or leave the headphones home and enjoy the sound of the woods.   Walking has also become a big part of Bens recovery, helping him gain stamina and energy.

This part of Ohio we live in is full of metro parks.  They are little gems hidden among the city.  Between us we’ve discovered quite a few of them.  He has his favorite and I have mine.   One thing I know for sure,     I will miss these walks in the woods. 

It’s a puzzle...

 

Keeping myself busy here in Ohio has often times been a challenge. For the past two weeks I’ve done two puzzles.  They are made by Dowdle.  I love these puzzles. 

Making puzzles last is sometimes difficult.. And I have to pace myself

Other times the puzzle takes me weeks.

I always take pictures of my puzzles to show my family their progress.

From pieces sitting all over the table and filling up pans

To the frame being done

And then as the picture starts to develop

And finally

To the finished picture.

It got me thinking about how sometimes life feels like a puzzle.

We have all these pieces or moving parts

We wonder how and where each piece will fit together 

and then trying to see ahead to what the future holds, or how it will all fit together.

My life the last two years has been a bit like a puzzle.

Pieces here and pieces in Utah

Questions on when Transplant will happen 

How it will turn out

How will Ben do

When will we have Lincoln come

Timing Timing Timing 

And on and on these and many more questions filled my head.

I’m a planner.

I like to have a plan in place and decide the steps needed to accomplish the plan

Then make it happen.

That’s how I conquer a puzzle,

I set up all the pieces, sometimes divide them by shape

Start the frame

And piece by piece watch it come tougher in an organized fashion. 

This puzzle of my life the last 2 years has not allowed me to make a plan

Everything revolved around the waiting

But now I can look back and see 

How each piece of the puzzle fit together in just the right place

At just the right time

And finally I can almost see the finished picture

Of this particular puzzle. 

As our time in Ohio draws closer to a close

We will put the last pieces of the puzzle in place.

I can see a time soon where we’re all back in Utah

Reunited as a family! 

Ben will begin the next phase 

living with transplant.

I see a new puzzle ahead of us

And honestly I can’t wait to see it take shape. 

Hopefully that makes sense or I’ve just make a puzzle of my thoughts as well. :-)

Here few of the 15+ puzzles I’ve completed in my time here.

There is Beauty all Around

I happily got to spend 5 days with my sweetheart in Ohio.

The three of us had a wonderful time doing some of our favorite things here and seeing a few new things.

The Highlights:

*. Eating Succotash at our favorite restaurant, Oak and Ember

*. Visiting Sugar Creek Ohio, and the largest working Cuckoo Clock

*. A real life Fairy House Hotel

*. Wandering the beaches of Lake Erie, Enjoying its different views and vastness.

*. Collecting Beach Glass, one of my favorite pastimes here.

*. The Smith Family Graves in the Kirtland Cemetery

*  Wandering the grounds of the Kirtland Temple

We really enjoyed every minute of our visit.

We look forward to all living together again home in Utah soon.

Until then Ben and I will continue to enjoy the beauty of Ohio!

Post Transplant Update Week 16

 

He’s come along way in the last 4 months. 

Ben continues to improve weekly, he is able to eat almost anything, his new organs are digesting, processing and he is absorbing nutrients.

Pictured below he’s enjoying is first apple fry pie.

He was able to have his central IV line pulled last week, this is the first time in over 3 years he is free of tubes!!!  Ben hasn’t had any more signs of rejection.

He continues to be on that high dose of steroids since rejection and they are just starting the tapering down process, which is very slow.  The worst thing for him is that the high steroids cause roundness of the face, shoulders and abdomen.  This should decrease over time as the steroid dose decreases.

His energy is slowly improving.  We would say all the negative symptoms Ben is currently having are side effects from medicines.

He is finally able to get out and enjoy a bit of nature again as long as we avoid crowded places and too many people.  Dad just spent a few weeks visiting and its always good for them to have some father son time.

The team told us if he continues on this track he could possible go home to Utah in 3 months!!  

We truly have seen miracles and blessings in abundance.  

Heavenly Father is in charge, of this we are sure!

Clear Blue Skies and Sunny Days

Lincoln flew to Ohio on Tuesday the 5th of May so that I could go home to visit my girls. I flew out to Utah on the 6th and Lincoln and I will spend some time together on my return.

My Utah visit was full of family time and fun, just a few highlights:

* Cuddles with the grandbabies

* A hike to Rocky Mouth with a fantastic view

* Pretty waterfall

* Hibiscus from my sweetheart 

* Yummy treats for Mothers Day

* Horseback riding with Brooklyn at my Sisters

* Homemade Berry Trifle 

* Chocolate Covered Strawberries for Mothers Day from my Sweetheart

* Bailee’s homemade fruit tart

* A visit with my parents 

* More loves with the Grandbabies

* Pedicures with the girls

* Watching Ollie enjoy Grandmas Cookie Drawer

* Spending time in my backyard

I’m so grateful for airplanes.  I never thought I’d say that in this lifetime, with my past great fear of flying.  But I’ve overcome that fear and have no problem flying at all!  Thank goodness, it allows me to visit home often.

It was a wonderful trip.  Picture overload...

PS I know this pic is a duplicate... I can’t get it to delete no matter what I try. ;-)