This little light of mine

Do you know this song? I learned it at my Grandma’s church as a child. I have a repertoire of songs I have sung to the girls at night since they were babies, and this is always one of their favorites. I caught Danica singing this tonight in a puddle of sunshine as she played with her “Little People” house. Her favorite verse is “Don’t let Satan blow it out!!! I’m gonna’ let it shine.” She raises her little finger in the air and blows the candle out. We have had a week of darkness in many ways and today, after a long night of Danica waking up many times screaming, holding her right leg and thrashing around, there was a little light. It came through rays of ordinary grace and tonight Danica went to sleep without a struggle and our home has a peace we have longed for.

I have struggled to find any time or energy to update on the somewhat excrutiating details of the week. I also wonder if I share too much dark if people will turn away. There have been minutes and hours where there is only a smoldering of faith left in this house. Today I was reminded in several ways it’s okay to be real about Danica’s suffering and the effect it’s having on Dan, Delaney and I. It’s a hard thing for people to look at this kind of pain closely for a long period of time. It’s an intimate thing to sit with us and not be able to fix this hurt but still stay. For all of you who continue to do this we thank you.

Danica had her recommended Klippel-Feil scans of her major organs on Monday. It was perhaps one of the hardest hospital days she and I have gone through. We received the reports that all her major organs look healthy and there is no deformity apparent. We spent several hours trying to get a good scan of her gynecological organs and found that trying to keep a two year old’s bladder full enough to view these underdeveloped organs is almost impossible. After forcing fluids and putting her on and off that table over and over again I made a mommy call, and we did not finish that scan, but I feel very confident this is something we can do at a later date.

Danica’s nighttime symptoms continue to worsen. We have stayed faithful with the collar during the day. We have had numerous conversations with Dr. Crone, neurosurgeon at Cincinnati Children’s, Dr. Fuchs, neurosurgeon at Duke and our dear Dr. Cohen, Danica’s “primary” neurosurgeon at Rainbow Babies here in Cleveland. I also finally received a call back from Dr. Menezes’ attending, Dr. Ahmed, who saw us at length during our Iowa visit. They all agree the suffering Danica is in is not “livable.” Dr. Fuchs and Dr. Cohen agree performing a further brain decompression now may give Danica the relief she needs neurologically to get her further in her growth before we would fuse her. They are not convinced her instability would be dramtically increased as a result of doing this surgery first and separate from the fusion. Dr. Cohen, in particular, stressed he still defers to Dr. Menezes because of his greater experience with this kind of cranio-cervical instability. Lastly he reminded me that my mommy gut has driven me from the very beginning and Danica’s case is rare enough with the combination of the Chiari and the assimilation that no one can really be sure what the right decision is and each one comes with it’s own set of risks. At the end of the day Dan and I have to make this call.

Dr. Crone in Cincinnati believes we need to decompress and fuse now. One thing we haven’t really talked about at length with anyone is the actual mechanics of fusion. This part of a tandem surgery would be performed by an orthopedic surgeon not a neurosurgeon. We have an appointment in Cincinnati next Friday, the 18th, with Dr. Alvin Crawford, the orthopedic surgeon there, to get all our questions out on the table and try to understand this complicated procedure. We believe this is a foundation needed regardless of if we decide to fuse now or later and who we decide to choose to actually perform the surgery. We plan to go as a family this time, stay two nights and take the girls to the Cincinnati zoo as a kind of mini vacation. Delaney has particularly expressed the need to be included in some of these trips. Although the driving and hospital visit will be difficult we are all looking forward to leaving our house and the pressures we feel here and being together.

Our frustrations with Dr. Menzes office are simply the inability to really access him in any meaningful way since our lengthy visit several weeks ago. I have talked to his PA several times about Danica’s worsening issues, and she has urged me to stay the course a little longer. Dr. Ahmed was more concerned today, but he needed to discuss with Dr. Menezes who is out of town until Monday evening.

When I watched Danica last night I was so afraid. There is definitely something hurting her when she lies down. She says her eyes are “glittery” and her leg is “fuzzy.” Please continue to pray for her protection during the day and particularly at night. Please pray we will find some kind of guidance in the next week so we can confidently move forward with a decision to help give her some relief. We need daily strength and little lights to help us continue to find God in the dark.