It’s always amazing how fast summer goes once we hit the 4th of July. We have been so grateful to get some really good caretakers and therapists to work with Trevor this summer. Trevor has been continuing to work hard at his recovery. Even though he is unable walk or talk yet, we have been able to do some summer activities with him now. We finally made it to a youth baseball game and it was so great to see the kids that mean so much to Trevor to interact with him. He has helped the kids with many activities and encouraged them the last few years. It meant so much to us to now see these young kids coming up to him and encouraging him.
We did therapy in the city pool one day and he tolerated it and did really well for over an hour. We are so lucky to have a facility like that to use.
Trevor has always loved being on the water and we did get him and his wheelchair on a pontoon for some time on the lake as well. It was good to get him out there again, but I sure did miss pulling him on his wakeboard and seeing him do his jumps and tricks. He had become a really good boat driver as well and we all enjoyed having him pull myself and the other kids around too.
We are now starting some new treatments in Fargo. He will begin doing hyperbaric oxygen therapy this week. This involves Trevor laying in a chamber enriched with oxygen under pressure to allow the body to take in more oxygen to be delivered to damaged tissue to aid in healing this tissue. This procedure is FDA approved for about 13 different diagnoses, but injuries such as Trevor’s is not one of them. However, there has been many testimonies and case studies showing improvements for head injuries and other conditions. We have decided we need to give this a try even if it is not covered by health insurance, and there really aren’t any serious risks to the treatments if they are done appropriately. We need to thank everyone again who has helped in any way to make this feasible to do.
Trevor’s recovery is still a long and slow grind, but we do notice improvements in his strength and balance and awareness. We continue to hope and pray his progress continues and he can some day give us all words of encouragement again like he is so good at.
It has been a while since the last update, and our world has been everything but normal lately. We went a period of keeping Trevor pretty isolated due to the threat of Covid-19. It was hard to decide what was best for him, limit his contacts and exposure to the virus but in doing so would also limit visits and official therapy. We did the best we could with our own versions of therapy for him during that time. After some time to see if the virus was going to explode in numbers or not, we have now resumed a full therapy and rehab schedule and have had other really great outside help assist with Trevor as well.
Trevor's recovery continues to be very slow, but he does continue to keep making steady positive progress, and we are thankful for that. We keep hoping for a breakthrough and sudden positive changes, but need to realize he has a lot of work ahead of him. What makes us so proud of him is how he keeps working hard day after day. He has always been one of the most determined individuals I've ever known.
He has been working a lot on going from a sitting to standing position and now does that with assistance. When looking from week to week, he has gotten stronger and he is getting some of his equilibrium back. We have been working on communicating and getting his oral motor skills going again as well.
He loves getting videos from friends, coaches, teachers, and others. We also get more reactions all the time from him when we read letters or cards people have sent. We love to hear some of the stories people have told of something Trevor and them have done or memories they have with Trevor.
We have made it to the football field a few times to be with his teammates as some of them workout or do drills, and he gives us a big reaction as we enter the field every time. It is so hard to not see him out there doing the drills. Not having him to help with the spring planting or helping with the newborn calves has been hard for us all. But when he does something new or makes new gains in his recovery, we are as proud and happy for him as ever.
With all of the unknowns and craziness that 2020 has brought so far, the one thing we do know is that Trevor will continue to give everything he has in his rehab. We appreciate all of the support and prayers sent Trevor's way as he continues to keep grinding in his recovery.
What a crazy world we live in now! The whole Covid-19 virus going around is affecting everything we all do. It has impacted what we envisioned having Trevor back home would be like, too. He hasn't been able to spend time with his friends and family like we thought. We had to suspend having therapists and healthcare workers come out to continue official rehab. We've had so many people reach out and want to help or visit in some way. However, we just cannot risk exposure of this nasty virus to Trevor. As of March 30th, he also has a new baby sister, Berkley Gene, who we need to protect as well. It is hard to believe it was just one week before his injury that he found out his new sibling was going to be a girl. In typical teenage boy fashion, he had a lot to say when he found out by responding, "Congrats!" He hasn't had a chance to meet her in person yet, but really has checked out her pictures. We had just got into a good routine with therapists and healthcare in the home before that was suspended, but he still has been hard at work with rehab with us. Progress is still slow, but improvements are noticed when looking from week to week. We have equipment at home to keep him working hard. His balance and equilibrium is slowly getting better, and he is getting stronger with his movements also. However, he still is not able to talk or walk. It has been so good to be back at home for him. He really enjoys going for drives and getting ample fresh air. We had a lot of snow geese and a few bald eagles migrating through and he really just felt at home watching and listening to the wildlife at sunset. We want to thank everyone who has reached out with offering help, finishing up home modifications, building therapy equipment, moving things, preparing meals, helping us at work, and everyone who keeps Trevor in their prayers. It has been a long road so far, and this caronavirus sure has added another level of obstacles for him to overcome. But anyone that knows Trevor knows he will keep giving it everything that he has.
March 11th was a big day for Trevor. Trevor finally made it back home on Wednesday after getting his staples and stitches out. He seemed to really enjoy his ride and just listening to the radio and getting out in the country really made him feel good. After being in a hospital for nearly five months, it has to feel good to be home. He and I both were a little teary eyed pulling into the farm.
Trevor still has a long road ahead of him for rehabilitation. He has been getting a little stronger and doing a little more each day. He stood with the help of two people on Tuesday for a short time. He will continue getting the help of talented therapists here at home and of course he has a huge support system here to work with him too. He has so many people cheering for him and rooting for him. I have so missed watching him play on the football field or basketball court or riding a snowmobile or helping on the farm, but it still is inspiring to see him work so hard to overcome his current challenges.
We all wish we could have a big welcome home party and Trevor really misses seeing his buddies, but we just need to wait for now with all the illnesses going around. We just need to keep Trevor healthy, and he is expecting to have a baby sister arrive sometime in the next couple of weeks too!
We again want to thank everyone who has been working hard to get our homes ready, the people helping set a routine for the coming weeks, and all of the continued support and prayers from people all over.
Trevor's surgery went well today and he is resting and recovering in the hospital. He looks to be doing pretty good tonight. Now we will be just taking it day by day and hopefully starting back up with therapies tomorrow. Thank you to everyone keeping Trevor in your prayers and thoughts today.
Tomorrow will be a big day for Trevor. He will be arriving at the hospital early for his cranioplasty procedure and will be there for a couple days if all goes well. We have been looking forward to this day for a long time. The procedure itself should only take a couple of hours and we hope he will be back to doing rehab shortly after. The most common complication for this surgery is infection. For anyone praying for Trevor, we ask to pray for guidance for the surgical and medical teams, pray for no infection, pray for comfort for Trevor, and pray for a fast recovery, and pray for healing and a successful procedure. Thank you again for the continued messages and cards supporting Trevor and all of his loved ones. We continue to be humbled by the number of people still praying so hard for Trevor and his rehabilitation. We ask for you to keep him in your thoughts and prayers over the next few days as these days will be big for Trevor and his many loved friends and family.
We did make it to Lifescape in Sioux Falls today despite the big change in weather. We left a relatively warm Lincoln, NE and by the time we made it to Sioux Falls, it had dropped nearly 30 degrees and was very windy. However, back home, school had already been called off due to blizzard conditions. The four hour ambulance ride really wore me out, so I can only imagine how hard it was on Trevor, but we made it and he was doing ok and getting acclimated to his new surroundings. It will be nice being a little closer to home, but we will miss the new friendships and connections we made while at Madonna in Lincoln. The staff there had been really great and the kids we met there that are tackling their own battles are fighters. It is inspiring to see them work so hard and make progress. We will miss seeing all of their smiles every day. We will be getting used to the new surroundings the next few days and also getting ready for Trevor's next procedure in twelve days. He will be continuing with therapy and working hard in the mean time. We can notice some little changes every week, and if we look back to where he was when we arrived in Lincoln, he has come a long ways. But he still has a long road ahead and the unknowns are what really wears on a person. The support and prayers from everyone is what keeps us all going during this long, long grind. It really is touching to see how people are still reaching out and caring. Last night a raffle was held at our home basketball game for a beautiful quilt made up of T-shirts designed for Trevor. Seeing all of the shirt designs combined into one quilt and to see how so many different ideas can come together for one purpose is overwhelming. It is the true definition of "team". And Trevor so loves being involved with a "team". We want to thank everyone for the continued support and prayers.
The new address for Trevor is:
Lifescape Children's Hospital 2501 W 26th Street Trevor Zuehlke Sioux Falls, SD 57105
Trevor has been continuing to make small but steady progress here at Madonna. We continue to hope for larger gains, but keep appreciating small and steady gains instead. Shana and I just arrived back in Lincoln today while Nicole and TJ have headed back home for a few days now.
Today we did find out we were approved for another week here at Madonna with plans of returning to Sioux Falls later next week to start settling in there before Trevor has his cranioplasty procedure in March. It feels good to have a plan going forward instead of being day to day again. We all really appreciate the continued prayers and thoughts the last few days. The messages and calls and cards really help keep us all focused and going forward when fear and uncertainty creeps in. God is good and we trust He will guide the way for Trevor’s healing.
Trevor’s mom, Nikki, wrote this on January 18th, the three month mark since Trevor’s injury...
“Our Heavenly Father already knows" Matthew 6:32
Today marks 3 months exactly since our whole life changed in a blink of an eye. Our world as we knew it will never exist the same. This has been the most difficult thing by far we have ever experienced. I cry or tear up at some point yet every day. There is not a day that goes by that I don't miss ''Him"., the Trevor we all knew. As a mom, it is so hard to watch your baby go through this. I want him back. Even the littlest things are difficult or impossible for him at this point. I have questioned God...but then I pray that much harder, asking God to take care of my baby and to heal him completely and let him know if trust him. I am so thankful that he is still with us and i am reminded that God does have a bigger plan and we need to be patient, as hard as it is. Trevor has come so far, i sometimes forget that until i look back at where we started. We celebrate every little thing from him eating a few bites of thickened juice or ice cream to eye blinks, to him following us when we talk to him. He does remind us that he is in there and just has a hard time communicating yet. We believe by the power of God and all the prayers he will get there...
This has changed so many people in so many ways... people who didn't even pray before now pray. It has brought out the good of so many people actually restoring many peoples belief of the good of people. We have strengthened many of our old relationships and met many people who have changed our lives for the good. We are so thankful for all of the support and prayers from everyone. Honestly, some days that is what gets me through. The random messages, prayers, cards, visits, and gestures. I can't wait to share everything with Trevor. He will be blown away.
I am not sure what God has in store for us, but I know he has forever changed our lives. What once seemed important is now trivial. Life is too short to dwell on things that don't matter. it has brought all of us closer for sure... this has been healing for many of us. Boy will Trevor be surprised when he realizes how close all four of his parents now are. I am so thankful at how God has worked through the four of us. We now make time for God, where our lifestyles were previously "too" busy in many aspects.
I tell Trevor every day that God is healing you from your head to your toes, inside out by the stripes of his cloth, its just taking a while because you are so tall:) I know God has big plans for Trevor's life.
The photo I shared is one from Karlie today... she has a journal that she has put a bible verse in every day since his accident. I should have her put them together in a book for me... they are a constant reminder of the power of God and truly that anything is possible.... God is working a miracle for Trevor.
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.
Trevor suffered a head injury during a football game in Warner Friday, Oct 18. He was taken by ambulance to Aberdeen where he was evaluated. A CT scan showed bleeding in his brain, and he was airlifted to Avera Mckennan in Sioux Falls for surgery to drain the blood and relieve pressure. The CT scan did not indicate neck or spine injury. Currently, he is in a medically induced coma to keep him still so his brain can heal and the swelling can go down. They will not do another CT scan until he is past the acute phase and swelling is gone. His medical team say he is stable, holding his own, and not losing any ground. His pupils are reactive to light, he has a gag reflex and shifts away from the nurses when they squeeze his fingertips. They were able to turn his vent setting down to minimal, which indicates he is doing a great job breathing on his own. These are all good signs. He is receiving several medications to reduce swelling and pain, and to prevent infection and fever. For now, the doctors can't tell us much more until they start trying to wake him up. We know Trevor is strong and determined, and he will fight his way back with everything he has, because he never gives less than 200%. Thank you to everyone sending prayers, please keep praying.