Sunday, June 6, 2010

Risks and benefits

We moved Danica's toddler bed out of her room tonight and put a twin mattress right on the floor. She has continued to have very "restless" legs and body at night. Really, it's more like thrashing around. I have bruises all over me from sleeping with her in our bed. We let her stay with my mom last night so Dan and I could try to get some rest (which unfortunately didn't happen due to our power going off three times). My mom said she was like a pinwheel with her body moving around in circles through the night.

As I began tucking her in, and she read me "Goodnight Moon" almost word for word, I thought about how I would post our sweet moment and just a few basic updates. More than an hour later I am exhausted from trying to get her to sleep. She had no nap today and finally as her little body settled down I could feel her muscles twitching when I rested my hand on her back. We are so tired from trying to keep her safe. We are so weary of telling her "no" and yelling that she can't do basic things like crawling around her Thomas track with her trains and holding her neck in the looking up position (it's one of the worst for her). We feel so mean for constantly scolding Laney for beginning to play with Danica in any active way because she may get hurt.

It's been just over a week since Iowa. Danica has worn her collar constantly except for sleeping and bathing. The first day home I had taken it off for her to eat, and she slipped off the bench and hit her chin really hard, so I realized she really should not be without it at all knowing how unstable she is. This week we have circled back with all four neurosurgeons who have consulted on her case. Without going into the details of their opinions here tonight I can tell you bottom line is Dan and I have to weigh the risks and benefits of having both operations immediately. Dr. Crone from Cincinnati, the doctor who found the bone issues on the 3D CT, said Friday, "This situation is not practical or livable. You have to take the risk to give her the best chance at some kind of childhood." I ran back to Dr. Ben Carson's book, "Take the Risk." The entire book addresses medical, spiritual and faith based and practical life situations with four questions he always asks himself when facing an important decision. In our situation the questions are:

1. What's the BEST thing that can happen if we operate?
2. What's the WORST thing that can happen if we do operate?
3. What's the BEST thing that can happen if we don't operate?
4. What's the WORST thing that can happen if we don't operate?

The next steps for us begin with all the Dr. Menezes recommended Klippel-Feil scans tomorrow at Akron Children's hospital. I am trusting they will all be clear. Much of this entire journey has been my mother gut and Divine leading. Because of my high risk pregnancy beginning in week 5 and my kidney being blocked from week 19 on, our little Danica was followed by maternal-fetal specialists continuously and had more ultrasounds than I can count. I firmly believe we would have noticed something with her major organs. I am glad we are doing these scans to rule out any other genectic deformities, but I am hopeful tomorrow will be uneventful with news and merely a formality.

Dr. Crone wants us to come back to Cincinnati and meet with Dr. Alvin Crawford, the orthopedic surgeon at Cincinnati Children's. He would explain to Dan and I in detail the process of Danica's fusion. He would explain the instrumentation used, bone grafting, etc. In all the talks we have had about her need for fusion no one has explained the details to us. We understand the brain decompression surgery for her Chiari, basically a further decompression that would not involve bone removal this time but coagulating (removing) the herniated part of her brain, opening the dura and putting in a dural graft. This surgery would be done at the same time by the chosen neurosurgeon as the fusion. We will get a referral call from Dr. Crawford's office this week to make an appointment.

We have huge overwhelming deicisions to make. I also believe we do not have a lot of time. Something in the same mother gut that has pushed me forward these long 14 months tells me if we do not make a decision soon something emergent will happen and we won't get to pick our surgeon. Please keep praying. Please pray that we will be very sure and have the courage needed to just MOVE.

I cannot leave tonight without again thanking all of you who are loving us. We have had so many amazing expressions of care to our family in the last months, and I can tell you some days they are like the literal hands of God reaching out to touch us. I have posted about my amazing sister Heather and her "Cookies for a Cause." For well over two years I have been blessed to work from home doing database work running lists for political and charitable direct mail. The ladies of RMLC who I interact with on a daily basis ordered cookies to deliver to all their clients this past week. Their support has been unfailing since all this began. By taking two days out of their schedule to make client visits and hand deliver these cookies and tell Danica's story they not only help spread awareness about Chiari and increase support for our family but are an amazing example of what their business is about. Philanthropy of any kind always comes down to real people. This is the best "health care plan." My sister's tireless love, the love of these amazing women, YOUR LOVE has changed us.

Dr. Carson writes in the aforementioned book, "Faith by definition is a risk." I have moments and even hours where I feel hints of peace and know my faith is secure. Admittedly, the rest of the time I am a wreck. The most wonderful thing about the foundation I stand on through all this is I cannot be moved even when I am doubting and certainly not feeling what I should. He is unchanging and nothing I say or do alters His care for me. I am safe. Danica is safe. Delaney is safe. Dan is safe. We are resting in the shadow of the Almighty God. No one can pluck us from His hand. Carson continues to write, "We all have the choice. But only when someone takes the risk of faith can he or she begin to experience the best consequence and the best rationale I know for belief in God. That's the privilege of a personal relationship with the Creator of the universe, who wants to offer His widsom and guidance to help us deal with all the other risks we face in our dangerous world." Amazing love and unmerited grace are our gifts tonight. Sleep or no sleep we will rest in these truths!


  1. Weeping over this... for you, with you. Praying so hard, friend. So very hard. Thanking Him for life, the beautiful gift of life He has given all of you. May you sleep in His sweet safety tonight. Loving you so hard it hurts.

  2. Well said Angie...I am right there with you feeling the same...

    Praying for peaceful answers, sleep and guidance, and most of all, success and comfort for Danica and your family.


  3. Monica, thank you for these updates so I can focus my prayers for Danica and for your family. We will be in Ohio in late June / early July and I hope we can get together. Stay strong!

  4. A quote from Oswald Chambers: "Faith is confidence in God before you see God emerging, therefore the nature of faith is that it must be tried...If we have confidence in God beyond the actual earthly horizons, we shall see the lie at the heart of the fear and our faith will win through in every detail."

    I Sam. 30:6 - "And David was greatly distressed...but David encouraged himself in the LORD his God."

    Ps. 34:7-10 - "The angel of the Lord encampeth round about them that fear him, and delivereth them. O taste and see that the LORD is good: blessed is the man that trusteth in him. O fear the LORD...for there is no want to them that fear him. The young lions do lack, and suffer hunger: but they that seek the LORD shall not want any good thing."

    Mal. 4:2 - "Unto you that fear my name shall the Sun of righteousness arise with healing in his wings; and ye shall go forth, and grow up as calves of the stall."

    Continuing to pray.

  5. I will be praying for you today. I don't really know what else to say, but I wanted you to know that a stranger out there is thinking of you all, and praying.

  6. I love you Dearly. Safety is from the Lord. Mom

  7. Monica & Dan....Praying Proverbs 3:5-6 as you make these monumental decisions..."Trust in the Lord with ALL thine heart, lean not on your own understanding, In all your ways acknowledge Him, and He will make straight your path!!...
    Love you...Bonnie

  8. I'm praying for you as well! He is with you, keeping you safe, and NEVER forsakes you. I'm praying for peace as well.

  9. I found you via (in)courage today. Thank you for sharing your story. May you continue to rest in God's unfailing love and grace.