Wednesday, August 21, 2013

Chicago Trip pt 2 and Fishoff Info

Following Landon's appointment Tuesday, we were left to wait in Chicago until our scheduled train home on Friday afternoon. We had initially planned on running more tests at Comer but Dr. Marcuccilli was kind enough to differ our testing to Kansas hospitals and take the lead on our case from afar. This allows some of our medical expenses to be absorbed by KanCare while he, very generously, will review the test results in Chicago at no expense to us. So instead of tests for Wednesday and Thursday, we turned into tourists.

As I mentioned in my last post, I can't emphasize enough how terrific Ronald McDonald House was to us during our entire stay. We asked if they had any suggestions for activities to do in the area and they went above and beyond. They were able to get us tickets to Shedd aquarium for Thursday and we really enjoyed our visit there. The fish were beautiful and it was a nice break to do something outside the doctor's office with the baby. We frequently get caught up running from appointment to appointment and don't make time to do enjoyable things together. Landon's favorite part of our day off was the water taxi ride. He really loves the wind in his face and the sound of water.

We enjoyed eating at new restaurants, seeing the sights, and making a plan for discovering more about Landon's condition. Most of all, we enjoyed spending quality time together and relaxing for a while. The beauty of this trip was that what we thought would be a litany of hospital tests and procedures turned into our first family 'vacation'. It really is important to step away from your problems occasionally and give yourself a moment to get perspective.

Our train ride home was uneventful in the best way. Landon slept wonderfully the whole way and feeding him through his g-button was much easier than a nasogastric tube would have been in that situation. We arrived back in Omaha late Friday night. After a trip to the Cass County Fair Saturday, we were back home Sunday. During the next few days, I called Children's Mercy in Kansas City to schedule an EEG, spinal tap, and blood tests for Landon. We are still awaiting a schedule for these procedures but we should have an appointment soon.

I would also like to let everyone know that our Landon Shrader Family Fishoff is officially finalized and we have a set date and location. On August 31 we will have a fishing tournament at Spillway State Park in Manhattan, KS at picnic area 22. Registration begins at 7 am and runs until 9 am but there will be someone there to take new registrants all day. We will be accepting fish for weigh in until 4 pm that day. The Manhattan community has been very generous and through donations we have been able to acquire over $500 dollars in prizes. There will be prizes for first and second place in 5 divisions: Men over 18 & under 18, Women over 18 & under 18, and child/parent team. Everyone who participates will get a meal ticket for a fish fry and hotdog feed at 4:30 after the prize giveaway. Registration is $10 for participants over 12 years old and 12 and under participate for free! If anyone has any questions about participating just let me know either by commenting or emailing me at

Thank you all for your prayers and thoughts. We are lucky to live in the community we do with the friends and family we have. Your support has been incredible and we look forward to hosting this event as a way to celebrate the time we've had with Landon and the blessings of having a terrific community around us.

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