THIS IS MY STORY . . .

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Jul 3, 2013

Yesterday:

My first saline infusion went great!  I don’t think I’ve noticed any benefit yet, but I guess it is a little early to tell.. 🙂

this is my infusion chair. 😉


Today:

My tube of saliva for the exome sequencing got sent off to Woburn, Massachusetts!!  Here’s to counting down 6+ weeks once again..  This DNA test costs $16,045…!  It’s moments like these when I’m VERY thankful for medical insurance. 🙂

I saw my neuro-ophthalmologist this morning, and she did another full exam.  Dr. F gave a few reasons why I can’t move my left eye very well.

1. I either have weakness of the eye muscles due to a mitochondrial disorder…

OR
it’s something entirely different like…
2. an enlarged cranial nerve
3. inflamed eye muscles
So she’s ordering 2 MRIs: a brain MRI (it’s been 7 months since my last one) and an MRI specifically for my eyes called an orbit study.  That will be interesting!

This morning, my geneticist in Cincinnati sent a referral for me to see a mitochondrial specialist in San Diego!!  It’s sad there are none in Oregon..  It will still probably be months before I can get in to see this dr., but I’m excited to finally see an expert who understands mitochondrial disorders.

Enjoy the sunshine! 🙂  To end, here’s a quote that I love.  I just read it today, too!

 No man can estimate what is really happening at the present. All we do know, and that to a large extent by direct experience, is that evil labors with vast power and perpetual success- in vain: preparing always only the soil for unexpected good to sprout in. ~ J. R. R. Tolkien
Post written byKerissa

This post has 2 comments

  • With the saline infusions, I don't know how warm your summer has been, but I've been struggling a bit even with the infusion the past two weeks with the hot weather.

    Praying for you girl!!!

  • Yeah our summer has been super hot! We just went through a heat wave. 🙂 But thankfully, I think it's starting to cool down.. Thank you so much for your prayers, Alana!! Love you! <3

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