Face Time

 https://www.caringbridge.org/visit/emilykoesters/journal/view/id/6127b82ed4c6d833fb7919cf

Click on the caringbridge site for the one week post op update on our little giant.

Eagle Eye?

 Here is our latest update on Emily's CaringBridge site, which this site can be reached in a link on this page anytime to get the full scope of her SIOD medical journey.

https://www.caringbridge.org/visit/emilykoesters/journal/view/id/61214d8facd8c03d7e8b45f0

Eye Surgery

 

Emily and I are heading back to the University of Iowa for her eye surgery Wednesday.  We hope to get a room with the Ronald McDonald House there, and if not they can get us a reduced rate at a nearby hotel prior to surgery and for post op.  We've been fortunate to stay at a few RMDH across the country over the years as we go to different hospitals for her SIOD rare needs.

So what is being done exactly?  Well... in simple terms, yet not the full scope- yes, she has a detached retina and it needs repaired.  She also has pigmentation scarring in both eyes.  We knew this and were being followed for it to see if it was an SIOD thing or something else. The only other SIOD patients ever to be documented with any kind of retina issues were a female sibling set documented back in 2003 and they are no longer living.      (Although the pathology of SIOD is currently not well understood, the underlying immune dysfunction of these patients may contribute to development of these ocular conditions. These findings may help to elucidate the pathophysiology of SIOD and lead to potentially new treatment options.) Ophthalmology Journal

As our new Iowa ophthalmologist told Emily, "Thank you, Emily.  I am learning something new from you today."  

So in a nutshell- the surgeons have not ever seen or worked on an SIOD kiddo, but the one surgeon is highly skilled in macular degeneration and will be overseeing her surgery.  They are hoping to repair all  of the left eye of the retinal edema and the multiple breaks in the retina, but not guaranteeing full vision repair or that the repair won't need to be done again.  They will also provide some drops for the right eye to hopefully keep it from detaching.

 

Emily continues to teach us all about SIOD, about courage, and about believing in possibilities as she defies ALL the odds stacked against her.  Now  excuse me while I do laundry, dishes and spend time with the fam before we need to divide and conquer again.  Stay tuned...

I have a feeling we're not in Nebraska anymore...

 Much has happened since this Little Giant turned 18.  Our annual birthday blood drive- saved 99 lives- our local county fair where Emily and her sister brought a prize winning black bantam cochin chicken- they named Rose and won a purple and blue ribbon with her for showmanship and cage showing.  But the most precedent thing now on the top of our list is Emily's recent medical battle that has docs baffled currently- again.  

Monday night Emily felt like she had something in her eye and things were a bit blurry.  By Tuesday evening it was so bad she could barely see out of her left eye and she was very worried, so I took her to our Children's ER in Omaha, NE.  ER docs brought in the Ophthamologist and she discovered Emily had a detached retina.  She referred her Wed to a retina specialist in Omaha the next morning.  There was also pigmentation scarring ( which we knew from a few years earlier) and it is in both eyes and the doc feels it may be a genetic thing.  So now we are in Iowa.  Emily and I  are bouncing back and forth from my folks in Cyclone territory to Hawkeye territory at the University of Iowa Hospital until the genetic eye specialists can determine best next steps which more than likely will require surgery.

Daddy Joe is holding down the fort and taking our youngest- the 5th grader to her first few days of school and Grandma J is helping as well where needed with the tween and the animals until we know more and know when we will be coming home and Emily can start her Senior year.