August 21, 2022 - Update from Katja

 

 

Update about Tobias - June to August 2022 - ¼

It has been a while since our last update. It also has been a while since my last entry in English. I apologize in advance about any funny mistakes. Lol

We are home now, but the first part of my blog entry still happened in the "Clinic". The second part at home :)

Tobias is taking a nap right now and that makes it easier for me to write. It still feels that I want to use every minute to move his body, make him practice talking and so on. Tobias turned into a project which sounds horrible I understand, but at times it feels like looking at an object and wondering on how to make it even better. It makes me jump to God, I still believe, believe it or not ;), I wonder sometimes if God looks at us the same way. “How can I make my child even better?” At times at works, because we listen to our inner voice other times we follow our ego strongly, because we just now better. I personally pray daily for inspiration and just for that one day. One day at the time has been working better for me so much better. After having many panic attacks and heavy anxieties, I have learned in recent month from my thinking mistakes.  I had to look at how I approached the situation, Tobias’ life changing brain bleed. It has been a learning curve and I am still trying to figure out how to stay happy and grateful, how to feel content and hopeful as well as how to life a normal life in those times. We are still in the REHA-Clinic, which is amazing to be honest. Tobias shows still potential. I of course know that, but it is easy to get distracted by negative thoughts.

 

I want to write in bullet points some fun facts about his recovery below and then tell you later a bit about some rehabilitation products I have found helpful and the way I have found them.

 

 

Speaking/Communication:

Tobias is communicating with us. He uses often the same words like: Yes of course or not at all. “I am not” Nevertheless, he has been using more words in recent weeks.  Since Tobias had surgery, about two weeks ago to have a medications pump implanted “Baclofen pump”, his life has changed. He has more strength or better energy to talk since fighting with his muscles and movements has become secondary. To correct myself, does not happen in the same form anymore.

 

Walking/sitting:

This topic is a bit upsetting to me, since Tyler and me, more Tobias, have been putting so much energy into helping him. I am disappointed sadder than anything else. I have been walking with Tobias around his bed a few times, but this seems impossible now. He was walking with the help of a therapist as well during therapy. The medication makes him so relaxed that his tone is completely gone and with his tone also his muscles strength. Sitting is slowly improving again, that is good news. His right leg is still strong, not as strong as with his tonus. The plan was to reduce the tonus and then built muscles to increase his strength. We are going to reduce the medication today.

 

The medication, Baclofen, has been reduced to 100 micro mg. Crazy, but Tobias is now able to make a step again. We do have to work on his core once more and of course his left site a lot.

 

Having said that, I did lots of research regarding atomized tools in rehabilitation. Virtual reality has always been an interest of mine. While Tobias stayed at the “U”, we stayed with my sister-in-law Lisa in NSLC. Her son Tyson had some fun VR games. I never participated but to be honest I should have. I felt guilty having fun in some ways. Our minds are funny when under stress and traumatized. Since I am a trained special ed teacher, (in German: Integrativer Lerntherapeut F.I.L.) I always wondered what else I could use to make learning more fun to the kids.

 

I have found a company called https://www.cureosity.de/en/kliniken-und-praxen

https://www.cureosity.de/en/kliniken-und-praxen

This company developed a program to support patients like Tobias with more severe or less severe impacts due to a brain injury. I totally fell in love with the product. After many conversations, I was able to get this product as a private person and hopefully support through the health insurance. I am so excited, Tobias is a virtual learner, being put in a virtual world and using his body and especially seeing himself during stuff as a healthy person should tricker a mirror effect, activate his left site, strengthening his ability to focus and so on.

Here is a cool study I have found:

 

https://www.researchgate.net/publication/268789198_A_Mirror_Therapy-Based_Action_Observation_Protocol_to_Improve_Motor_Learning_After_Stroke

 

It influences healing, connecting and strengthening the weaker site of your body after a stroke.

 

Next entry:

 

It has been a while since I wrote the above. A lot has happened. We prepared our departure from the clinic (12^th of August), said our good bye’s to the people who touched our lives in the past 8 month. So much to say here. I would like to write more about those people in a later blog entry. What I want to say in the meantime is, that

we will always meet people who we appreciate, and other we don’t, nevertheless, I leaned in the past 12 month, that there was not one person, who did not have a purpose in the past 12 month  of my life, both clinics. Some people made me so angry because I felt that Tobias did not receive the right care from them, or we simply did not have the same therapy goal in mind and so on. Some people were so pleasant, they brought light into my dark spots of the day. The noises of kids who were mental and physical handicapped kept me often awake at night, but at the same time reminded me, of how lucky Tobias was. His injury cannot be looked at with pretty eyes, it is severe, but nevertheless, there are other young people who walk, but will never be able to have a smart conversation with their loved once again. Tobias will and already can in some ways. Tobias has a kind of Aphasia, speaking is difficult, but with lots of new training from very specialized therapist, we hope to improve that. We communicate by writing, speaking and body language.

 

Life challenges in a “double pack”:

My friend Li from the clinic, another hero mom and her daughter, are alone with their son and brother. The husband got cancer around the same time the boy was bit by a tick, which caused the boy severe brain damage .. a long medical story which I don’t want to mention into details. His father died on cancer in January 2022, around the time were also the boy became again very sick. He can walk now, this since about May 2022, but he is not able to talk or to think a complex thought. You cannot leave him unattended at any time. The mother lost her husband and in a way her son, The daughter lost her father and in some ways her brother, too. It seems like, that life challenges can always be topped. Yes, you are right. I feel much lighter and very grateful knowing how harsh life can be, it could have been much worse, I guess. It is also crazy how much strength HOPE gives us all. It drives me forward, sends me creative ideas and the power to pull through.

 

The touch of others:

Friendships have been formed and a network has been created. I appreciate life much more. I also was able to look at my old me from one year ago. How many times did I visit the sick or contacted the weak, people in needs? I always have been trying but there was always something else, a thought I could be annoying, to many people have been visiting, I don’t know the person that well and so on. It is crazy, how much the focus of life changes, when your own life goes up-site down. How many times did I wish I would have done more. Life is life, so there are many opportunities to share the burden of others, so I promised myself I will.  I am very proud of Tobias, with how much dignity, patience, trust and love he holds high, the day since he understood what has really happened to him and how much it has impacted him.

 

A forgetful mind – a punishment:

Currently, Tobias forgets happenings very fast. If the brain things “Not important”, it is gone a few minutes later. The activity, the talk, the movie, the conversation, the book he is listening too, never made it to the long-term memory. Luckily, he has all his old memories, but Tobias is so far, only able to create very few new memories. I hope that will change.

 

 

Eating-swallowing-chewing

 

In my next blog entry, I will talk about the exercises I do with Tobias, but also the tools I use and find helpful. I want you to know, that I still feel strongly, that Tobias will get out of this, back to school and able to live what he has dreamed for. I might be one of the very few people who believe in his healing. He has spent 12 intensive months with him. 8 months in Germany on his bedside at a clinic. I brought him to every therapy and watched him. I fed him every meal as well as he was able to take it. I laugh with him, made him laugh, smile and forced him to talk. All the above with lots of humor. Humor got his interest, and it made him feel alive.

 

 

 

 

At home – harvesting potatoes J: