May 15, 2010

So here we go again

Yeterday was an extremely emotional day.  From talking about DNRs for a potential fatal diagnosis to "Nevermind".  My eyes are still swollen today from the crying ... first out of pouring my heart out to God in pleading.  Then in pouring my heart out to God in praising. 

10am the Neurologist came in.  Immediately she asked about SMA.  I told her it had been ruled out and we got the results just last night.  She saw his symptoms and asked when the test was done.  4 days old.  She said she wanted it repeated as they can have a false negative that early.  She thinks it's SMA.  So here we go again. 

She also is ordering a brain MRI.  His one done at 2 weeks old showed normal.  But a CT at 8 months showed something abnomal. An MRI will show better what is going on. 

If the SMA test comes back negative, she wants to order a spinal MRI.  She thinks there's a possibility of spinal cord issue/injury/disease. 

If that comes back normal, she'll order a muscle biopsy. 

In the meantime, she also wants Manny to see the Opthamologist.  He does these strange things with his eyes and I've been wondering what it's about so this satisfies MY curiosity as well.  But you can also see some neurological things through the eyes so it's a pretty non-invasive way to rule some things in and some things out. 

On another subject of concern, through the night, he slept just fine (considering how often people come in to probe him).  He had suctioning once an hour.  Nebulizer every 3 hours.  Vitals (including temp ... the hard way) every 4 hours.  Fluids changed every 2 hours.  Well, you get the idea.  But he slept through MOST of it. 

But me?  Nope. 

Why?  His oxygen levels kept dipping very low all night.  The deeper the sleep, the lower the numbers and longer it took to recover.   We're thrilled a pulmonologist is coming by today.  Wondering what he'll think about what is going on and how to address it given how weak his muscles are. 

So we're still in need of some major prayers and More Miracles!  Feel free to pass this blog along to any prayer warriors you know.  They can become a "follower" or they can subscribe and get a notification any time it's updated. 

Love to all, Beth (tired Mama)


  1. still praying every day!!

    Charlotte T

  2. Praying for darling, sweet, beautiful, wonderful knit-together-by God-Himself Manny. And praying for his faithful, strong, willing-servant Mama, who fiercely loves, the way her Daddy does. Bless you, Bethie.

  3. Manny is blessed to be placed in your home. He is so cute it is must be hard to wait on all these test with such dire outcomes. No matter what God knows the plans he has for Manny and he will be well loved by you and his family.

    Praying for answers, and improvment, God is the great physician.