I am sitting here typing in the dark because Danica has been up screaming already tonight that her legs are hurting. This is a symptom that has been increasing over the past weeks and is worse when she is lying down. She is sleeping next to me now but her legs are moving all around like she has restless leg syndrome. Every passing day I am more sure we need to get these pieces together quickly and find her some relief.
We have an appointment set with Dr. Menezes at The University of Iowa Hospital on Friday, May 28th at 2:30 pm. My parents have lovingly offered to take the trip with us so we will be driving and they will be able to help watch Danica during the consult after Dr. Menezes examines Danica. (In most our visits with doctors either Dan or I, usually Dan, has to take Danica out so the other person can converse and listen. It always makes us feel like we are missing information and disjointed when we leave.) My sister Rochelle and her boys will come here to stay with Delaney while we are away.
We met with Dr. Cohen today, Danica's neurosurgeon for her first decompression. He so kindly spent an hour with us going over the newest scan and many of our questions. He confirmed Dr. Menezes is the only doctor in the US who is truly specialized in Danica's condition. He was impressed with our quick referral from Hopkins, and he even emailed us tonight that he has a call in to Dr. Menezes to discuss Danica's case. I will update a little more tomorrow on his advice for us as we head to Iowa and actually have to make these big decisions.
We are feeling glad to have a plan in place and several times today God has confirmed in my own mind and heart this trip to Iowa is clearly His leading. I have a little sheet of paper in my Bible that says in my mom's hand writing "Proverbs 3:5-6. I love you dearly." She gave me that note and a bag of Twizzlers laying on my bed when I was 15 and seeking direction in my life. I keep it because those verses connected to her love have always given me strength and peace. Tonight I will "Trust in the LORD with all my heart; and lean not on my own understanding. In all my ways I will acknowledge Him, and He shall direct my paths"--OUR path on this journey.
"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.
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