Aug 10, 2013

What a week!  To my great surprise and disappointment, I found out on Tuesday that the exome sequencing DNA test hasn’t even been started yet… 🙁  Here I thought the test was almost completed!  Long story short, we found out that this certain laboratory in Massachusetts is out-of-network for our insurance.  So ever since July 1st, the lab (together with my doctors) has been doing all they can to get this DNA test covered, appealing and fighting to show insurance how necessary this test is.  I don’t know what’s going to happen, but I should hear by next week what they find out.  I know it’s in the Lord’s hands.  Thankfully, if getting the test through this lab doesn’t work out, there are always others.

On Wednesday, I heard back from that mitochondrial specialist in San Diego. 🙂  After thoroughly reviewing the referral and my records for 5 weeks, the dr. formed a plan.  Before he decides whether to see me, he’d like me to get some extensive tests done first and then review the results:

1. another lumbar puncture (spinal tap) — I can’t even remember what it is he wants to check in the cerebrospinal fluid because it was too complicated..

2. whole exome sequencing — if the lab in Massachusetts doesn’t work out, he recommended one in Maryland.

3. repeat electromyogram and nerve conduction study

4. possible muscle biopsy

This coming week, I see neurology and G.I. on Tuesday and Thursday.  And hopefully, I get the echocardiogram results as well.
I came across this poem when I was cleaning through a computer file last week, and I wanted to share it with you.  The words are so rich!
He sat by a fire of sevenfold heat,
As He looked at the precious ore, 
And closer He bent with a searching gaze 
As He heated it more and more. 
He knew He had ore that could stand the test, 
And He wanted the finest gold 
To mold as a crown for the King to wear, 
Set with gems with a price untold. 
So He laid our gold in the burning fire, 
Though we would have asked for delay, 
And He watched the dross that we had not seen, 
And it melted and passed away. 
And the gold grew brighter and yet more bright, 
But our eyes were so dim with tears, 
We saw but the fire⎯not the Master’s hand, 
And questioned with anxious fears. 
Yet our gold shone out with a richer glow, 
As it mirrored a Form above, 
That bent o’er the fire, though unseen by us, 
With a look of unspeakable love. 
Should we think that it pleases His loving heart 
To cause us a moment’s pain? 
Not so! for He saw through the present cross 
The joy of eternal gain. 
So He waited there with a watchful eye, 
With a love that is strong and sure, 
And His gold did not suffer a bit more heat, 
Than was needed to make it pure.
Post written byKerissa

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