Monday, March 10, 2014

Not health, but healing . . . not the end, but it is the road

This life therefore is not righteousness, but growth in righteousness, not health, but healing, not being but becoming, not rest but exercise. We are not yet what we shall be, but we are growing toward it, the process is not yet finished, but it is going on, this is not the end, but it is the road. All does not yet gleam in glory, but all is being purified. ~Martin Luther

As promised, I am writing a quick update from the dark of our hotel room.  Danica's MRI today went very well.  She did wonderful with her anesthesia.  The doctor noted there was a bunch of green mucus when they pulled the tube, and we filed that away as something a little odd since Danica hasn't really been sick. Dr. Crone was thrilled with Danica's brain scans.  Her Chiari is tucked neatly in the cerebellar sling, and she has beautiful cerebral spinal fluid flow to her brain.  We talked a little about how really remarkable her healing is.  It stops you in your tracks when so much of your life is about a little part of the brain in the back of the skull and finally you see it there, safe and sound.  Danica's scans did show a completely blocked left sinus.  Most of us would be howling in pain if our sinuses looked this bad.  The radiology report used scary words like "acute" and "diseased."  Dr. Crone suggested antibiotics right away and then an ENT consult.  Our loving primary care doctor took my call and phoned in a prescription to a pharmacy here right away.  She has been having nosebleeds and other mild symptoms we didn't get too frantic about. We are so thankful for the timing of this MRI or this infection could have gone on for weeks or longer. Please pray she will have healing with the medicine we are trying.  

Tomorrow we head to orthopedics to look at her fusion.  When we are settled back in at home I will sum up.  Thank you so much for all your love.  She is healing, and it is not the end, but it is our road.  


  1. I'm glad you had an update on your page today. A facebook friend posted a link to your blog so I clicked on it rather than going to my list of favorites. The update the link took me to turned out to be an old one (fortunately) when Danica was having new problems. I'm glad to read that things are going well for her.
    My daughter and I both have chiari, EDS and IIH. It's been a long journey. Cristina's journey is a story of hope I share with other parents. She had over 25 surgeries between 2004 and 2007 for chiari and associated problems. We never thought she would be better or be able to live on her own. We even had the garage remodeled into a downstairs bedroom for her since she couldn't climb stairs and had trouble walking. Fast forward a few years. She's now 25, a college graduate living on her own and holding down a full time job as a special education teacher. She's off all her pain medications. She will never be pain and symptom free, but she's living the life a 25 yr old should be living. Our miracle was not granted in her complete and total healing, but it was in her remaining a wonderful young lady who's always willing to help others.
    I see that same willingness to help others in what you write. Thanks you for that. I pray that your family will receive miracles large and small in the coming years.

  2. Today's Washington Post has large article about Ehlers-Danlos and Dr. Henderson written by Jeff Leen- should be easy to find on Post website