Tuesday, October 15, 2013

Appointments and Community Support

This post is long overdue and I'll apologize now for how long it has taken me to finish. I've gotten so busy between classes, homework, studying, and surgery that I've had very little time to organize my thoughts and write about the events of the past few weeks. Unfortunately I don't see myself getting any less swamped in the near future so I will warn anyone reading that it might be another extended wait between updates.

That said, we've had an extremely eventful past few weeks and have a full schedule in the weeks to come. On September 29, my parents hosted a fish fry at their home for our community and supporters. Several dozen people came out on a beautiful Sunday afternoon to eat and have an opportunity to meet Landon. We really appreciate all the volunteers who helped prep food and pick up. We wish we could have stuck around longer but I had to get back to study for an exam on Monday morning.

Little Goat has had a tough road over the last month. We have consistently struggled with balancing his tremors, gassiness, and spitting up. As he gets bigger, we have to give him more anticonvulsant to control his tremors. However, as his dose of anticonvulsant increases, Landon gets very gassy and has had several nights where he has been up screaming until the early morning. We can control the gas a little by increasing the amount of food he gets with his meals every 4 hours but he spits up significantly more. As I've mentioned in previous posts, the biggest risk to Landon's health right now is to spit up and aspirate.

Landon had several appointments last week that we are still waiting to hear results back from. They drew several milliliters of blood to test Monday. On Friday, Landon had x-rays taken due to swelling in his right leg that has made it approximately 1.5-2 times larger than his left leg. The swelling was diagnosed as a blocked lymph duct but the radiographs were taken to rule out any more significant complications. It is difficult to assess if Landon would be in any pain if he had more sensation in his lower extremities but he acts happy and comfortable so we are not overly concerned it right now. Landon's appointment Friday left us concerned about other issues right now. Dr. Katz has suggested that we consider placing a tracheostomy tube. He described Landon's current condition as "perilous" and that he is "at high risk for a respiratory crisis." This advice has weighed heavily on Karen and I for the past few days. Is it fair for Landon to go through another significant surgery? We can't know for sure but it is likely that the tube will be uncomfortable. Furthermore, it will silence Landon so that we won't hear his cry or rare coos anymore. Those are risks and moments that Karen and I are not willing to give up considering Landon's long-term prognosis and we have elected to not go with a trach tube.

We were extremely fortunate to have time to come home Saturday evening for a fundraiser held for Landon at the Elmwood-Murdock High School. There was a silent action, bingo, great food, and wonderful company. The event was hosted by the FBLA chapter and we wanted to thank that group of students for their selflessness and generosity. In particular, we would like to thank Brenna Backemeyer as the primary organizer of the event even with all her other responsibilities as a student and chapter President. There was an unbelievable show of support and hundreds of people showed up to eat and support us. Everyone was far too generous but we couldn't be more thankful. It is events like this that remind me how lucky I am to have been raised in this community and is a great source of pride.

Emotionally, Karen and I are both struggling to stay energized. We both emphasize having a positive attitude and lifting each other up during difficult times but lately we have just been getting exhausted, both mentally and physically. It's tough sometimes when it feels like you're in an endless struggle that will never end. Conversely, if our struggle ever did end it would be the worst day of our lives. The whole situation is incredibly taxing on our emotions and attitudes. Knowing that we have support from family, friends, and community is really all we could ask for. Thank you for all your prayers as well. As we continue to embrace our situation and try to live each day as a gift, we could not do it without our faith.

"Life is not easy for any of us. But what of that? We must have perseverance and above all confidence in ourselves. We must believe that we are gifted for something and that this thing must be attained." - Marie Curie
Life is not easy for any of us. But what of that? We must have perseverance and above all confidence in ourselves. We must believe that we are gifted for something and that this thing must be attained
Read more at http://www.brainyquote.com/quotes/keywords/perseverance.html#mIRfXBfzE5EHQXYr.99


  1. Trent, Karen and Landon,

    I am in awe of all of you. It was an honor and a privilege to get to meet Landon at last and get to hold him, he is so beautiful! Thank you for sharing your son with me, I must admit I fell in love with that little man!! I am keeping all of you in my thoughts and prayers. Your families and community are unmatched.

  2. Much love and light to you all. Thank you for sharing your lives, and be blessed with those magical moments with Landon. He loves you and feels your warm, safe comfort.