"Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all . . ." Emily Dickinson
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"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be." Psalm 139-13-16
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Dan, Monica, Laney and Danica
About Danica and Monica's Chiari and related conditions
Our little Danica has a Chiari malformation in her brain. What this means in simple terms is she has a gap where most people's skulls are closed so some of her brain is sticking out into her spinal column. She had brain surgery in November, 2009, which brought her some relief, but her brain became herniated again, and we were told she needed another more involved brain decompression. In addition to her Chiari, Danica was diagnosed with atlas assimilation, a congenital formation of her skull fused to her neck vertebrae. She needed spinal fusion to help make her stable. Both surgeries were at Cincinnati Children's Hospital on October 5th, 2010. She braved 5 months in a Minerva brace and wheelchair and another 8 months in an Aspen collar. On October 25th, 2011 her scan showed complete fusion. Danica's brain and spinal cord MRI on February 22nd, 2012 showed a true miracle. Except for her obvious fusion hardware and cerebellar sling her scan looked completely normal. Praise! We continue to deal with a recurring infection and travel for her follow up scans to check on her bones as she grows. She is doing well with very little pain or symptoms.
For over a decade I have suffered from wide spread pain and other neurological symptoms. I was diagnosed with fibromyalgia in 2001. Through Danica's journey I finally put the pieces together. Over the last five months of 2011 my health declined to include constant suboccipital pain and disability. I saw Dr. Fraser Henderson in Maryland on October 19th and scans showed what we really already knew. I too had craniocervical instability, atlantoaxial instability, Chiari malformation, cervicomedullary syndrome and Ehlers Danlos Syndrome. I have had nine surgeries since August 2010. I suffer from daily pain and a progressive "invisible" illness.
This blog is our story. We live in hope.
For over a decade I have suffered from wide spread pain and other neurological symptoms. I was diagnosed with fibromyalgia in 2001. Through Danica's journey I finally put the pieces together. Over the last five months of 2011 my health declined to include constant suboccipital pain and disability. I saw Dr. Fraser Henderson in Maryland on October 19th and scans showed what we really already knew. I too had craniocervical instability, atlantoaxial instability, Chiari malformation, cervicomedullary syndrome and Ehlers Danlos Syndrome. I have had nine surgeries since August 2010. I suffer from daily pain and a progressive "invisible" illness.
This blog is our story. We live in hope.
Information on Chiari and related disorders
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2011
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March
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- I'm not crazy . . . I'm just a little unwell
- Outside the boat
- Kindness as Grace
- Light as Grace
- Disney and the American Dream
- The Little Blue Engine
- This is our story, this is our song
- Faith is the subtance of things hoped for
- A little video taste of our joy today . . .
- PRAISE
- It feels like hope
- Finish the race
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"I will hope continually, and will yet praise thee more and more...I will go in the strength of the Lord GOD..." Psalm 71:14, 16
ReplyDelete"Be of good courage, and he shall strengthen your heart, all ye that hope in the LORD." Psalm 21:24
So nice to see the pictures. Oh to have the faith of a little child. She is such a beautiful child Monica. You do such a good job putting the music and videos together! So proud of and impressed by you. You and your family have been teaching me so much, as I walk through a hard journey of a different sort. Anyway, will continue to pray for all of you. Carol
ReplyDeleteWeeping through this as I watch it over and over and over. GREAT is His faithfulness. I love you.
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