Sunday, April 18, 2010

Meeting with Dr. Cohen, other opinions and a gift

Wednesday I was able to drive to Cleveland to pick up copies of all Danica's records, the op report from her first surgery and discs with her scans on them to send to Duke and to Cincinnati Children's Hospital. Dr. Cohen graciously met with me to discuss questions Dan and I had following our personal research about the results of Danica's latest MRI. These are some things I was able to clarify/take away from our conversation:

1. He rarely "coagulates" or removes the tonsil in cases like Danica's. I understood he is firmly in the camp who believes brain tissue shouldn't be messed with unless absolutely necessary. When I asked him about research showing the tissue is damaged and results when other doctors do choose to go this route he agreed the tissue is not in good shape and results have not shown any long term negative effects.

2. He reminded me he had presented Danica's case to most of the chief pediatric neurosurgeons in the United States at a conference immediately prior to her surgery last fall. Danica's case is made even more rare because her Chiari is exclusively on the left side. He said most of the other doctors agreed with his initial surgical approach although there were some who told him they didn't think it would work. (I want to reiterate to you how humble and accessible and open this man is. Our meeting on Wednesday reminded me how grateful I am for his gift of helping our Danica and his advice now as we move forward.)

3. He commended our choice of seeking another opinion from Dr. Fuchs at Duke as well as suggested Dr. Kerry Crone in Cincinnati. As you can imagine pediatric neurosurgeons are a rather small and elite fraternity who rely on one another's research and expertise in many cases. It was helpful to know these were good choices at this stage.

Everything was overnighted to the other surgeons on Friday. I'm sure it will take a few days for them to get to the doc's desks and be reviewed and then for us to hear back from them. In the meantime we are trying to breathe a little and do some "housekeeping" to brace for what's to come.

One of the biggest issues right now is trying to really figure out what we owe for all Danica's medical expenses last year and getting Summa to follow through and pay their part. Besides one group of bills from early last year which Akron Children's allowed us to consolidate and make a monthly payment on we have a growing stack of "ignore" bills. Bottom line, one brain surgery is excrutiatingly expensive but now we are in a new year, have a new deductible, and are facing even more than we can imagine. As parents this has to somehow be put on a back burner, because we have to find Danica the best care at any cost, but it is still always there. When we begin to break under the anxiety and fear we only need to remember God's faithfulness to find some peace. We have so many stories we could tell of His gifts to us through the kindness of others over the last three very hard years, but I want to tell the newest one before I close.

Our most dependable car has needed new tires since last April when all this began. We have put countless miles on those bad tires driving back and forth to all Danica's appointments, physical therapy and to Cleveland. With these other opinions at Duke and Cincinnati we knew we were going to have to drive even further from home in the next month or so, and we knew the tires were bad enough we couldn't take a chance. Dan receives a quarterly bonus from his job which we would always use to try to catch up on bills or to take care of something larger like car repairs. His company cut those bonuses in half beginning in Jaunary. He gets the quarterly half bonus this Friday. We knew we were still short the amount needed for the two bad tie rods to be repaired and the four new tires we needed. I have been praying. I haven't told anyone about this need, just my God.

Last night my parents stopped over and my dad handed me an envelope with the exact amount we needed to add to Dan's bonus for the repairs and tires. This money was from a family who used to attend our church but moved away. They heard about Danica and our family and felt moved to bless us. This gift met our immediate need, and it was the perfect encouragement to us there is nothing our God cannot do. I know any discussion of personal finances makes some people uncomfortable, but it is a very real part of our life right now and of Danica's journey. Tonight we are trusting and resting and waiting and so very thankful.

Thank you to everyone for all your cards and emails and calls of love to us this past week. They mean so much. Most of all thank you for continuing to pray. Danica had a few rough times last week, mostly at night when she has overdone it and cannot rest. She had a really good day today and although her tortocollis seems to be getting worse she is still able to run and laugh and play. She will always be my hero!

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