Trevor’s Story

Site created on October 20, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Kurt Zuehlke

It has been a while since the last update on Trevor. We all made it through the holidays and last week was the first full week of a "normal" routine in quite a while. Trevor did get his trach tube out on December 29th.  It didn't really happen as planned, and required a trip to another hospital due to some bleeding around the trach sight, but it was taken out and has now healed very well, and he has been doing very well without having it in. The transfers and extra commotion really wore him out, so it took a few days to just recover and catch up on rest. It really wore me out, so I can only imagine how much it exhausted him. 

The week of January 6th went pretty well. There is an increase in focus, head control, and more stamina. He shows many signs of hearing and understanding what you talk about. He is trying so hard to help with moving and other certain tasks, but just cannot quite coordinate the muscles to do the more complicated tasks yet. He makes many more sounds, but cannot make words yet. He has started eating more soft foods and does a real good job of swallowing and protecting his airway, but he does tire out very fast when he starts out concentrating on tasks. We did finally see a small smile out of him, which was so good to see his small dimple above the corner of his mouth.  

One of the hardest things for us is not being able to communicate verbally with him to know what his needs and wants are, although we have started to catch on to his cues and he is becoming much more consistent with using eye blinks or eye closing to answer us. We miss visiting and talking with Trevor so much. I remember one of our last conversations was about taking the ACT's and colleges he wanted to visit and play football for, and of course the grain and cattle markets. He really had a vision of what he wanted with his future and seemed so mature for his 17 year old body. 

As time moves on, we really keep waiting for some large steps forward in progress. We have been trying to come up with a plan going forward for Trevor's best interests that include getting the skull flap put back in place which has to happen in Sioux Falls. There will be so many big decisions to be made soon, and we will need to rely on following whatever God's plan is for Trevor going forward. We did find out our stay in Lincoln was approved for a couple more weeks by insurance, so now we at least know that for sure. 

We are often asked what specifically people can pray for.  Nikki wrote the following:
Pray for God to guide us with Trevor's recovery and healing process.  Specifically when the time is right to get his bone flap put in and also for the insurance company to see the continued progress even though it is slower than they would like.  We are on God's time and plan, not insurance's. Pray for all of Trevor's loved ones (family and friends). I know it is so hard because we miss the Trevor that we knew and are trying so hard to trust in God's plan. 
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