Yes, it has been less than a week, but it is life. This is the first time, Dad and Eben are going back to Mayo Clinic. We are praying for just a few days. Eben will be fitted for a bi-pap and have a few more tests. [...]
Eben Bockenstedt - Journal
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We got here Tuesday night. We stayed in a hotel until Friday night. Last night, we were able to move to Ronald McDonald. We had hoped to be a quick trip. Unfortunately, Eben is having an outpatient procedure Monday morning on his esophagus. We hope that once he is given the green light we can drive home Monday night. He has to be back on the 17th of October for tests. They are going to place him on a bipap. After this is done, if his pressures don’t improve the neurosurgeon will put in an ICP. [...]
Tuesday, we will travel back to Minnesota. Eben is due for his 3 month brain MRI and the genome is back so we get to hear the results. The head of pediatrics sent me a novel about his genome, but it will be so nice to ask questions in person. I will write more about that when I have had the chance to speak to the genetics doctor face to face. [...]
Summer is over and school has started back, but I wanted to take a moment and thank a very special young man to us.
This summer God gave us s gift. Jordan was able to be Eben's personal care assistant. He began working with Eben this summer and through Jordan's love and persistence Eben had the best summer of his life. [...]
We are headed home for 2 weeks. The neurosurgeon doesn't have the right equipment to reprogram Eben's. (He doesn't want to replace it if he doesn't have too.)
The overnight study they did showed Eben seized 3 times. I had no idea. I slept through the whole thing. I knew the techs came in, but I thought it was to readjust wires. The tech never woke me up. (That made me feel like a heel!) they need to ween him from one seizure med and start him on another.[...]
Bart and I have been the recipient of being blessed this year. Being able to take our son to find answers meant the world to us. Although, we still are in a long process of finding him help. We want to thank each and every person who loved on us this year from taking care of our kids to sending us money for food and gas.
This season when we are contemplating the gifts we are giving and the ones we have received. I want you to know your gifts to us have made a difference to our son and family, and that difference means all the world to us.[...]