Saturday, August 3, 2013

First Meeting with Primary Care Physician

Landon had his first appointment with his primary care physician on Wednesday and Karen and I are very pleased. Dr. Knopp agreed to take Landon after a representative from Infant and Toddler Services of Kansas contacted him and told him of our situation. We were both a little worried that he would feel coerced into seeing Landon and might not be very engaged with his case but the truth was quite the opposite. I was unable to attend the appointment but Karen said he was thoughtful, considerate, and very interested in being Landon's physician.

While at his appointment Landon was updated on his vaccinations and took them like the little champ he is. After the vaccines and an exam, Dr. Knopp surprised Karen by expressing real concern with our emotional and psychological well-being. He wanted to make sure we were comfortable and were pursuing counseling if we needed it. He was also proactive about contacting Landon's other doctors and making sure that everyone was on the same page as far as medications, dosages, and test schedules. We are very pleased with Dr. Knopp and after a long search it is a nice feeling to find someone we are comfortable with.

The big news this week is that our little family will be traveling to Chicago to meet with Dr. Marcuccilli of the University of Chicago Medical Center. Dr. Marcuccilli specializes in brain malformations that happen during development. The University of Chicago is also where Landon’s blood will be part of a genetics panel to assess whether or not Landon’s condition is something that could be inherited by any future children Karen and I might have. Hopefully this trip will give us some answers we have been searching for since Little Goat’s birth.

We will leave very early Monday morning from Omaha on the Amtrak train to Chicago. Landon does not do well enough in his car seat for us to be able to drive and he was not cleared by his doctors to fly so the train it is. We will arrive around 2 on Monday afternoon and Landon’s appointment is at 10:00 the next morning. Based on the result of his exam and any tests he chooses to run, Dr. Marcuccilli may choose to run more tests on Thursday. We will take the train home Friday afternoon and should be back in Kansas soon after.

This is Karen’s first trip to Chicago and I wish it could be under more relaxed circumstances. I have really enjoyed each of my trips to the city and I think she would as well if we had time to be tourists. Unfortunately, we most likely face two long days in hospital waiting rooms out of our three day trip. The hospital is near Lake Michigan so maybe we can make a trip over on Wednesday while we await test results and enjoy some time outside with Landon.

I am anticipating quite a bit of news after our trip and hopefully I can get a blog written on the 9 hour train ride home Friday. Landon has been doing extremely well since his gastric feeding tube was put in and there has been little to ‘write home about’ so to speak. As much as we enjoy the little joys of more restful nights and nicely cleared up diaper rashes, they don’t make for very riveting reading. Hopefully this trip will be a catalyst for some big news in the near future.

“…Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.” – Jesus, Matthew 17:20


  1. This is great news. I'm glad things are settling down for you, and hope there is more good news to follow. Thank you for the update.

  2. Good luck guys, I hope this works out and that God blesses you.