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!