Thrown a Curve Ball

San Diego is very possibly a no-go!!  I'm as surprised as you are. ;)  I found out on Wednesday that the mitochondrial specialist that I got referred to is booked through the month of December..  Plus, he only sees 3-4 "adult" patients one day per month.  And I just can't really wait that long.

My G.I. system hasn't been functioning well at all for the past 2 weeks, I'm starting to get right-sided muscle weakness, and as I wrote before, I'm losing movement in my left eye.

I also got my holter monitor results last week---I wore a holter for 48 hours, and in just that short of time, the report states I had over two thousand single premature atrial contractions (PACs) and over fifty PACs in pairs.

Plus, my sleep hasn't been great...I often wake up in the middle of the night with sopping, sweaty legs.  The holter report also said my heart rate dropped to 55 bpm during that particular night.  So my neurologist ordered a sleep study for me.  Unfortunately, the place is booked, so the study isn't until September 4th.

I see my neurologist in 2 1/2 weeks and my cardiologist this coming Monday.

But anyway, back to the story. ;)  So San Diego looks like it's not working out...no worries, though, because my geneticist in Cincinnati referred me to an even better place!!!  But until I know for sure that it's a go, I won't be saying a word about where I may be going! ;)  Please say a prayer that this particular dr. will be willing to see me and sooner rather than later...it's sad that there are so few mito specialists in the country.

Stay tuned! :D

Full of Awe

It's been almost 3 weeks since my saliva tube for the exome sequencing got sent off to the lab!!  Counting down 3 more weeks.. ;)  With this new test, the lab can sequence over 1,100 genes!  Being excited is an understatement.  Knowing that there may be even more potential answers is so encouraging.

Look at this picture below.  That, my friends, is what's in every person's DNA...!  This picture alone speaks of God's wisdom and handiwork! :)  Getting the chance to have my nuclear DNA sequenced is eye-opening.  I truly serve and worship a great God!

And as I was thinking about this, going through all these health trials is really part of God's good purpose!  If I didn't have any of these problems, then I wouldn't have the opportunity to learn all of this!  I thank the Lord for His plan in my life.  So please don't wish my life any different. :)

This is even better in full screen, so feel free to click this picture. :)

The small red box in the first picture is this magnified below:

Isn't this SOOO fascinating?? =)

Also, if none of my health issues had happened, then I wouldn't have met this precious little guy back in April at the Ronald McDonald house in Ohio.  I never grow tired of this picture.  Isn't he the cutest 2 year old ever??

He recently had a bone marrow transplant and is soo brave.

Hard Week

This has been another difficult week.  On Wednesday, my 89 year old grandpa passed away suddenly, faster than all of us were expecting.  He was in the end stages of kidney failure but given 4-6 months to live.  But this past Wednesday, he had a catastrophic event---the social worker thinks he must have had a heart attack or something like that.  I already miss him so much. :'(  This is the second family death in not even 2 months.

One of the things I'll always remember about my grandpa is how he always made me laugh:

• When I was little, he used to call me "shorty."  That was his nickname for me.  I didn't like being called that then, but now...I chuckle!
• Ever since I started getting bad headaches last year, he always wanted to know how I'm doing and if I still have "an itchy head."  Haha! ;)  For some reason, he got mixed up between those two things!
• A few weeks ago, I wanted to take a picture with him, so I told him to say, "Cheese!!"  He said, "Cheese!!  Bleu cheese!!" :D

Holding me on his 70th birthday. :)

One of my favorite pictures with him taken just one month ago. <3

Love So High

This past Saturday, a dear mom from my church passed away after a long, long battle with cancer.  I am going to miss her so much. :'(  I first got to know her more when I graduated from high school with her daughter.  And when I got home from the hospital last September, she came to my house and blessed me with a beautiful orchid plant.  I'll never forget that visit with her.  It was such an encouraging time, talking about books and all things medical-related.  We were fighting different health trials, yet we shared a bond because both of us could at some extent understand what we were going through.  She was the epitome of joy.  And she sent me such sweet cards and emails that I treasure still today.

Whenever I saw her in person, I always thought to myself, "If she can do this, so can I!"  She was such an inspiration to me.

Please pray for her beautiful family---her husband and 3 daughters. <3

I think of Matt Redman's lyrics in the song Love So High.  And a line in the song (verse 2) about Jesus says, "Your wounds are our healing."  I just ponder that and how it is SO true.  Because of Jesus' love so high, his wounds on the cross do bring healing.  Mrs. S's death is not the end but just the beginning!  She is now healed, experiencing the fullness of joy in Heaven! :)

Listen to this song.  It will bring tears to your eyes:

"O death, where is your victory?

O death, where is your sting?

...thanks be to God, who gives us the victory through our Lord Jesus Christ."

~I Corinthians 15:55

More tests..

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