What Happened At the Mayo Clinic

It always feels a little arrogant to apologize for not keeping everyone appraised of what is going on in our lives - I would have to assume that you are really THAT interested in the all details of our life...and though I know we are very loved, I don't assume that we are quite that interesting or important. :)

So, no apologies. It is what it is. :)

But still, I know there are people out there who wonder - what exactly happened back in May at the Mayo Clinic? How is Jonathan doing now? Do we have plans to move back to Alaska?

(Plus, I like to keep this blog up for myself. It serves as a memory-keeper of our married life. There are so many things I would forget if I didn't have a place to keep them all written down, and with all the moving we've done, online is definitely the safest place for our memories.)

SO, back in May we visited the Mayo Clinic in Florida. We really had no idea of what to expect to come out of that visit, but we prayed a lot over it and realized that, no matter what happened, we couldn't place our hope in men.

We met with a neurologist and a gastrointestinal specialist while there and received some really good opinions. The GI doctor was the most helpful. He listened to us very intently and even seriously asked for our own opinion on what was causing Jonathan's symptoms. Finally, he offered his theory - the virus Jonathan had in July/August 2014 went haywire in his system because of his weakened immune system causing full-body nerve damage, which further caused all sorts of lasting symptoms, complicated by travel, a prescribed steroid overdose, etc.

There is no (efficient or worthwhile) way to test for this to know if his theory is absolutely correct but he quoted studies done to prove that any severe illness can cause lasting nerve damage (even severe food poisoning can do the trick in some cases) and put a lot of the odd puzzle pieces together for us.

When we left his office we were pretty thoroughly but cautiously convinced. I couldn't number the times we've thought we had it all figured out before, only to find we were completely mistaken. So we took some time to consult with other doctors, and think through it all for ourselves.

In the end, we have adopted the Mayo Clinic doctor's theory. In some ways, it's been a huge relief - he doesn't have any disease causing further damage. In other ways it can be discouraging - there is no treatment for this, only time will heal him. His doctor predicted 1-2 years before he is back to "normal", though I doubt he will ever be quite as energetic or seemingly-limitless as before.

Jonathan still struggles with a lot of "invisible" symptoms. On the outside he looks perfectly normal and healthy, but he suffers from intense headaches, a persistent numbness on half of his face, muscle cramps and twitches, intestinal pain, heart palpitations and chest pain, plus a host of random, odd things that pop up, make us scratch our heads, and then disappear.

He's slowly been working up more stamina. In May, he would work 2-4 days a week and then completely crash every evening and weekend. Now, he consistently works 30 hours a week and has energy to spend playing with a little 19-month-old ball of energy in the evenings and occasionally work on a project on the weekends. Progress can seem frustratingly slow but it is happening!

As far as our future plans, we still dream of returning to Alaska some day. But that day isn't in our sights yet. Right now we are still living with parents, keeping up with doctor visits, and planning for Baby Boy #2 to join us in just a few weeks! :) :) :)

Long Overdue Update!

Well, we've been living in Georgia with Jonathan's parents for six months now. (Has it really been that long!?) Once he was set up with a doctor down here, Jonathan was quickly referred to a neurologist who proceeded to methodically work her way through every test on her list. Every one came back as normal as you could hope for. Hooray! - No brain tumor. No apparent Lyme's or MS. No vasculitis. No aneurysm. But now what?

Over New Years, Jonathan's chest pain and heart palpitations went from fairly annoying, to increasingly alarming. So he was referred to a cardiologist who also ordered a battery of tests and voila! One came back slightly abnormal. Jonathan was diagnosed with a "right bundle branch block" which the doctor explained as caused by the steroids/virus and told us should go away within a year or so. That was a huge relief! But we still had many more symptoms to find answers for.

Most recently, Jonathan has been seeing a GI doctor for a bunch of issues and going through all of their testing. So far nothing significant has shown up, but we're still working with them. We're also trying to work with his neurologist to find the cause of his persistent and often severe headaches. These are his main complaints at present.

Apart from the physical aspect, we've had a lot of emotions to deal with as we made the decision in March not to return to Alaska this summer. Jonathan's health has simply not improved enough to work on a regular basis, let alone live hours away from any type of medical care.

We had planned to fly up and pack up our house/say goodbye to friends at the end of April, but Jonathan caught a cold the week before we were leaving which brought a lot of symptoms back, making us uneasy about traveling and spending time away from medical care. So, we accepted the offer of Jonathan's brother in PTA and some wonderful friends to go through everything we own and sell, pack or toss it for us. Once everything is packed up, they'll mail the totes down to us.

I'll take a moment to admit - as matter-of-factly as I can type it or even say it to friends, that was an enormously painful decision to make. We don't know if this decision means that we simply will miss the busy season this year, or if the Alaska chapter in our lives is completely finished. And while life in Port Alsworth has its challenges, we love it there. We love our cozy blue house. Jonathan has his dream job - flying in bush Alaska. We really love our friends there. Port Alsworth is the place we made our first home together. Facing a future with so many unknowns and the inability to plan is uncomfortable and scary.

But God has made it faithfully clear to us that we are where we are supposed to be, even if it is a painful place. He has purposes for us here. We are learning and growing in our dependence on Him. and that is what counts. That is what matters. That is what we try (and often fail) to focus on every day.

As far as what's ahead: Jonathan scheduled an appointment at the Mayo Clinic in Jacksonville, FL. That is coming up at the end of this month and we would appreciate your prayers as we prepare for it.

If you would:
Pray for the doctors to be granted wisdom.
Pray for us to recall everything accurately and communicate clearly.
Pray for peace in knowing we are in God's hands,
Also, for us to have wisdom and patience in our parenting (as well as our marriage :)) and not to let stress influence our interactions.

And finally, a quick update on our little man, our bundle of sunshine and snuggles and fun!

Ethan had his first birthday in February! It was so wonderful to be able to celebrate it with family. :)

 He is walking and talking - learning all kinds of boy-words like "car" "dog" and "stick". He loves games like peek-a-boo and wrestling with Daddy. He also loves to help with the laundry or cooking.

He is a super-affectionate little boy, smothering us with hugs and kisses every day. We love every one!

Trials & Changes

After a 4-month long silence, it's hard to know where to start.

Fortunately, most of you are somewhat aware of what has been going on in our lives recently - Jonathan's health issues, all the flights into Anchorage, ER visits and doctor visits, etc. Most of you are probably clueless about what's actually wrong with him, but we're all in the same boat there.

I won't go into the details of his various puzzling symptoms or all the tests and "diagnoses" we've had. Suffice it to say, we've gotten "answers" but we haven't been completely satisfied with any of them. None of them really fit. Of course, his symptoms change so often that hardly anything has a chance to fit before something else comes up.

Last week we hit a wall when we had to take another last-minute flight to the ER, this time for chest and abdominal pain. At the hospital they did an EKG, a blood test and even gave him something for acid reflux, just in case. Later, he had a CT scan for his abdominal pain. Everything came back normal. His doctor didn't have any suggestions any more. He referred him to a GI doctor which will take weeks or more to get in with.

So, we sat down and talked about a difficult decision that has been on our minds for a while: going back to Georgia.

It isn't a new idea; of course it has been in the back of our minds all along, but we really didn't think it would reach that point. With this last flight into Anchorage, however, we realized that we can't keep this up any longer.

We've been in Anchorage as much or more than we've been home lately, which means Jonathan isn't working and we're spending extra money on hotels and meals in addition to medical care. Poor little Ethan never knows where he will be sleeping next. And as much as we love and are loved here, Port Alsworth isn't a place for sick people. Even with most modern conveniences available (except for any type of medical care whatsoever), the bush is still the bush and everything you do is more difficult in some aspect.

So, we've worked out a plan. We've arranged to have Jonathan's brother house-sit for us so that we can leave the majority of our belongings, taking only bare necessities down with us. We are hoping to be gone for only a few months, expecting to return to Port Alsworth for the start of the busy season in April or May. Until then, we will be living with Jonathan's parents, enjoying family and friends and seeking better medical care.

This hasn't been an easy decision by far; we love it here. We have a cozy house, we have sweet friends, we live in one of the most beautiful and adventurous places in the world. We've worked hard to make this home and it is now. We are heartbroken to leave it, even for a season, but it simply makes sense.

 We will be leaving very soon, catching a flight to Anchorage tomorrow and leaving Alaska on Wednesday afternoon! Every day out here has become a nerve-wracking roller-coaster with Jonathan's health and it makes no sense to prolong it now that we've made a decision.

I can't close this post without thanking you. Friends from all over the country have reached out to us. We are so grateful for the endless prayers and emails and offers of support from so many of you, even when you didn't understand what was happening. You knew we needed help and that was enough to keep you on your knees until you knew otherwise. Not many can boast such friends. How richly blessed we are!!!

When we returned home from Anchorage on Saturday we found a spotless house, our dirty dishes and laundry cleaned, cookies and a sweet note waiting and dinner on the way! I cried. It was so much what we needed. We are loved and we are not alone.

 

July

It's salmon season! 

July has flown by (almost literally with a pilot-husband ;) but we've had time to make some pretty big Alaskan memories (is there any other kind?).

Probably the most memorable has been our first salmon season as residents! 

Because we have now lived in Alaska for over a year and are considered residents, we are allowed to net as many salmon as we can eat in a year...for free!

 A salmon that had been swiped at by a bear. Rare sight!

We were able to share a net with some friends and took turns picking the net on different days since none of us were free every night.

Our first evening was a beautiful one! The lake was calm and the sun was out. The other two nights were a little wet and chilly, but that just added to the experience. :D

Overall we harvested about 42 salmon, with our biggest catch being 22 in one night. 

I had absolutely no idea what we were doing, so I was very glad that Jonathan did! :) After the first night I caught on and was filleting right alongside Jonathan and our good friend Jael who netted with us. :)

Filleting salmon wasn't the only new skill I mastered with this experience; we went all out and bought a pressure canner to can our own salmon with. I'd never actually canned before, but it turned out not to be quite as intimidating as I had thought. Time-consuming, yes, but still relatively simple. Now we have 3-dozen Ball jars stuffed with yummy salmon to enjoy all winter long!

Aren't they so pretty?

We didn't can all of our salmon - the majority of it we froze in meal-size packages for easy dinners.

One night of netting = sink-full of salmon fillets

This is about a 1/4 of the salmon we froze.

Lots of hard work, lots of fun, and it pays back all year long! We are so blessed.

June Date Night

It's hard to believe June is over and gone and we are halfway through the summer up here!

We've had a bit of an odd summer, first with nearly an entire month of sunshine and warm temperatures, followed by a month of chilly rain. Currently we are enjoying a mix of both and the forecast for the 4th looks spectacular!

Jonathan and I were able to go on our first baby-less date recently, compliments of my friend Rebecca Hadden who is working at Tanalian Bible Camp this summer. She graciously offered to babysit with her spare time and gave us a chance to try out the new cafe/coffee shop/general store here in Port Alsworth - the very first of it's kind!

After our dinner we got to try out the boat we are one-third owners in and had an amazing time just boating around the lake for a bit. We were blessed with a quiet evening and the lake, usually rather bumpy, was quite calm.

Here are a few pictures: (Fun fact - these were all taken between 11-12 at night!)

Leaving Hardenburg Bay - such a perfect night!

Bye-bye Port Alsworth

Out on the lake

My handsome captain.

My new dream home. ;)

Let's call it a night.

What a wonderful date night! That memory is definitely a keeper. How blessed we are to be living in one of the most beautiful spots on earth!

Ethan - 4 months!

For my birthday Jonathan bought me a new 50mm lens for my Canon Rebel T3.  I've heard wonderful things about this kind of lens and it sure hasn't disappointed me! Here are a few of the most adorable photos Ethan has given me recently. :)

I can't believe our sweet little boy is 4 months already! He is growing in leaps and bounds and changes every day. Currently he is enjoying experimenting with his voice...loudly. He has discovered the world at his fingertips and loves to feel Momma's hair or Daddy's scratchy face.

At his 4-month checkup, Ethan weighed 13lbs, 14oz and was 25" long. I'm definitely starting to feel that when I tote him around in my Moby wrap. :)

We're so excited that Jonathan's brother, Joseph, has moved up to live with us and work at Lake Clark Air! Ethan has finally met one of his six uncles and he and Joseph are already buddies.

In August we're planning to join my (Jenna's) family for a vacation in Wisconsin. We can't wait to finally introduce Ethan to more of his family!

May Celebrations!

It seems like we have been celebrating nearly nonstop for the past few months; that must be one reason that this is my favorite time of year!

To begin with, I forgot to post about our one-year anniversary back in March! It has been one year chock full of transitions: marriage, moving across the continent, pregnancy, new baby...just to name a few! It's been a year full of transitions, but even more abounding in blessings and grace! Looking back, we wouldn't change a thing.

This May we celebrated Mother's Day, my birthday, and one full year in Port Alsworth!

We can hardly believe it's already been a year since we packed up everything we owned in this rig

and drove 4,700 miles in 10 days! It definitely was the trip of a lifetime.

This birthday was spent a thousand times better than my last one was: tearfully trying to navigate Anchorage alone in our manual transmission Ford Ranger, whilst Jonathan was flown out to Port Alsworth, last minute, for pilot training.  It sounds dramatic (it was), but we get lots of laughs out that story...now ;)

This year was the first birthday I've been able to spend with Jonathan, so that automatically made it a win! Plus, I had the most adorable baby to snuggle and play with. To top it all, Jonathan baked me a homemade Boston cream cake! It was even better than it sounds. :)

Last Saturday, we attended the Fifth Annual Sourdough Fly-In, here in Port Alsworth. It's a flying competition hosted by Lake and Pen Air, complete with a cookout, a live band and, of course, airplanes! 

Ethan, unfortunately, wasn't all too thrilled about spending a day away from his cozy bed and familiar surroundings (we're going to be working on his flexibility a little more...) so most of my time was spent trying to console him instead of taking pictures. I do have a few I can share from last year though. ;)

In the competition they have categories such as: Spot Landings (where the pilots must land as close as possible to an orange line), Pizza Drop (where a passenger drops an object out of the low-flying plane, as close as possible to a cone) and Short Take Off (where the pilots compete to see who can get off the ground in the shortest amount of runway)

Perhaps you're still wondering why it's called the "Sourdough" Fly-In? Our fun isn't over yet! Sunday morning, before church, there is a fundraiser breakfast hosted by Tanalian Bible Camp where they serve sourdough pancakes!

All in all, the Sourdough Fly-In is a super-fun event that, I think, really captures the spirit of Port Alsworth. If you ever decide to visit, come in May!