Day 205- DANCING WITH THE LORD

Wow, I sure did let a lot of days pass since my last post. So, what has been happening? Karly and I flew to Maryland on July 14 to attend Reid's Memorial Service just prior to her hospital treatments. Tracy and the girls drove out. The service was honoring to him and his family. Of course it was emotional, but so good to see many family members. We were cared for by Debbie and Ridge's friends for meals, and special events...bonfire, horse riding, and swimming. Konner and Kassidy were able to spend some extra days with their cousins before they attended their second Sibling Day at NIH. They experienced a full day of activities planned just for the siblings of the patients at NIH. They were interviewed as well by CBS news in Bethesda and quoted in a Gazette and Newsletter.
Here are the various Sib Day stories beginning with Channel 9News Now last Friday:
http://www.wusa9.com/news/local/story.aspx?storyid=162638

NIH Clinical Center:
http://www.cc.nih.gov/about/news/newsletter.html


Gazette story:
http://www.gazette.net/article/20110727/NEWS/707279562/1036/siblings-get-window-into-world-of-nih-medical-procedures&template=gazette

Karly's appointments went as usual. She continues her treatments. She still hasn't felt well since February. We have looked into several scenarios and tried various drugs related to those scenarios. No improvements noted. Upon leaving last time, we started a different antibiotic. It seemed to do something to her abdomen and stomach unlike anything she had ever felt. She had difficulty explaining the feeling. Never-the-less, her appetite decreased largely, and she just didn't feel like eating. After 2 weeks of this medicine, the pain became extreme in her abdomen. She discontinued this medicine. After 2 weeks off her stomach, abdomen and appetite are better. The good news in all of this is that finally after almost 6 months of feeling really crappy, the headaches left for 3 days, she had energy, and she felt clearer than she could remember. So the story continues: after being off the drug for two weeks, all the symptoms returned. Upon our last visit to NIH over August 14-16, it was determined to admit her Sept.1-10, put a PICC line in, give her some heavy duty antibiotics and a fungal for her resistant fungal infection and blast those bugs. I will have to back track on my next post to include the vacation to Alaska which occurred between those two visits. For now, life is staying busy. Being gone for at least 8 days out of 21, then having the weekend take up another 5 days, that leaves 8 weekdays to get everything done I would normally do in 21 days. Of those 8 days, the evenings are volleyball and dance and meetings. The days are schoolwork, appointments, paperwork, and preparing for all said activities...you know... the parent roles. blah blah blah...not complaining really. I was just trying to figure out where all my time goes. The good news about that is "God is in control of all of it". It just ebbs and flows according to Him. I have to remember to not get ahead of myself. I actually was blessed to have about 5 hours catching up with a close friend in Indy yesterday. What a joy it was! Things in the Koch Household are well with each other and well with the Lord.
Love,
Mom