Ian’s Story

Site created on December 11, 2019


"And the Lord said, “If you had faith as a grain of mustard seed, you could say to this sycamine tree, ‘Be rooted up, and be planted in the sea,’ and it would obey you." Luke 17:6

On Sunday, December 8th, Ian was diagnosed with transverse myelitis (spinal cord inflammation) after days of fatigue and fever followed by an acute onset of pain in his bladder and increased weakness in his legs.  His diagnosis has been further defined as acute disseminated encephalomyelitis (ADEM) which is essentially an acute, but widespread attack of inflammation in the brain and spinal cord.  

Today Ian is very weak and lethargic, but every day we see a little more of the Ian we all know and love and hold out hope that his return to former strength and intellect will happen quickly.  There are more questions than answers when it comes to Ian's recovery, however.  We do not know today how long Ian will need to be in the hospital nor how long it will take for him to make a complete recovery.  We also do not yet know if his form of ADEM is likely to have a recurrance or if this will be a one-time attack on his body.  What we do know is that the prayers of family, friends, and strangers alike...even if that prayer contains only a mustard seed's worth of faith... is capable of great things and ask for your continued prayers for Ian's recovery.

Newest Update

Journal entry by Brian Brost

I will give thanks to the Lord with my whole heart;
I will tell of all thy wonderful deeds.
I will be glad and exult in thee,
I will sing praise to thy name, O Most High.
Psalm 9:1-2


Ian has been home for 2 weeks, and I figured it is a fitting time to provide one final update.  Ian did record a short message which is also attached to this post.

Update on Ian
Ian is doing AMAZING!  Every prayer and hope that you all have offered up for Ian's recovery and for our family has been answered with the very response we had hoped for.  Both physically and mentally, Ian is probably above 95% of his baseline and gets better every day.  He is playing piano just like he used to, eager to resume school lessons, once again reading for hours a day, and is even going to try ice skating tomorrow!

In terms of explanation of what caused Ian's encephalitis and transverse myelitis, we don't have much more to share than what was described previously.  The consensus remains that the inflammation in Ian's brain and spinal cord had a viral cause.  It could have been an immune mediated response to CMV as originally presumed or it could be related to the virus they identified in his spinal fluid, HHV-7.  In either case, Ian's response to the virus is considered extremely rare.

On that note, we would be remiss not to emphasize how grateful we are for the team at Mayo Clinic who worked tirelessly to diagnose and care for Ian throughout his nearly 6 weeks in the hospital.  We do not take for granted the amazing experts that worked on Ian's case and the compassion shown by all the staff.  There are people we met that we will never forget.

In terms of recovery, there is not a way to pin point what change in his treatment enabled such a stunning response, but we delight knowing his recovery is a gift from God and an answer to so many prayers.

So what is next for Ian?  He is recovering very well and no longer needs physical or occupational therapy.  He has also cleared infectious disease and psychology follow-ups and no longer needs to be seen by those specialities.  He will be followed for a little while longer by speech and language pathology and also has neurology follow-ups in February with repeat MRI imaging on February 3rd.  We hope to receive confirmation of further resolution to his inflammation.

THANK YOU
On that note, we have fully entered a stage of gratitude. It will take some time to reach out individually to everyone who has supported us over these past weeks and months. Please know how grateful we are to all of you...grateful for you and the love and care you have shown Ian and our family.  The comments via Caring Bridge, the emails, the texts, the gifts of support, and, most importantly, your prayers have made all the difference.

Words are not enough to adequately thank you and to express our joy in Ian's complete recovery!

What to Pray For
Continue to join us in prayers of gratitude. God is good!

 
"And the Lord said, “If you had faith as a grain of mustard seed, you could say to this sycamine tree, ‘Be rooted up, and be planted in the sea,’ and it would obey you." Luke 17:6
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