Friday, October 3, 2014

Day 71

I went to the Natural History Museum last Saturday while Karly and Lora were off exploring Bethesda. I especially enjoyed the tarantula feeding. The big guy is holding a cricket suspended underneath him which they said would take about 4 hours to drain. Sunday, I grilled pork chops and prepared some oven-roasted potatoes and super yummy sweet corn from the Farmer's Market earlier that day. Monday, we were so excited to be able to meet 10 yr. old AJ from Nebraska. He is 14 months post-transplant. I was able to ask Sara several questions which helps me understand things to come. Monday and Thursday labs were okay. We were allowed to try lasix last weekend which definitely brought the BP back to normal. Her heart rate is still high. We are not allowed to take other BP medicine that could lower it right now. Also her CR came down as the tacro level went below therapeutic. As we increase tacro so does the CR increase.  It probably went high also because of the lasix. It is yucky high again. Her GVHD was worse again probably because tacro level was lower. As you can tell, it is quite the balancing act.

On Wednesday, we were blessed to be able to watch my sister and niece present at an Ethics Course for Freshman medical students at the Bethesda Naval Hospital, formerly known as The National Naval Medical Center. Several parents of difficult medical situations are asked to sit at a table after the presentation. The parent presents a 2-3 minute history of their situation. The medical students at the table ask questions that deal with ethics and things that would make them a better doctor. We were able to share our story at one table and lead the discussion. Ridge, Deana, and Debbie were among other table leaders. It felt useful. It is a fantastic program that all medical schools would benefit from. Afterwards, we were able to share a delicious meal from The Cheesecake Factory. Deana(sporting one of Karly's blond wigs) and Karly in photo to the left. Thursday evening was NIH Movie Night. We have mostly been at the House by ourselves. A mom and son(7 yr. old) from Jamaica moved in Wednesday, so we have another presence in the House. Tonight is game and dinner night at the House. Maybe we will get to know them better tonight. Karly, Zach and I will be going to a dance studio tonight to try Fox Trot and Swing Dance. We have a busy weekend planned. Frederick, Md on Saturday and Annapolis on Sunday. I am really excited about Sunday because we will be hanging out with my cousins. My sister will be joining us and maybe my uncle. All is well with us. Contentment, joy, peace and God's presence are with us. Things to pray about: she is getting the MRI of her Brain and Abdomen next Thursday. We hope to get some answers in regards to the Kaleidoscope vision, neurological symptoms, and arteries near her brain as well as see what is happening with the renal arteries. Thanks for praying. God is in control at all times!

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