Another Step Forward… and Another Challenge
Dystonia :(
5/28/20262 min read
Another Step Forward… and Another Challenge 💙
Hi everyone,
I thought it was time for another little update from my hospital room.
The good news is that I am finally off Vapotherm after weeks and weeks of needing lots of breathing support. My lungs are still recovering, and I still get very tired, but being off the machine feels like a really big step forward. Mum and Dad say they can finally hear more of me again instead of just the constant noise of machines around my bed.
Even though one battle is getting better, another one has decided to make itself known.
Over the last few days I have been having some really difficult bouts of dystonia. Dystonia is a condition that causes muscles to contract and tighten without meaning to. For me, it can make my whole body twist, stiffen, jerk, or pull into uncomfortable positions. Sometimes it looks like I am fighting against my own body, and it can be painful and exhausting. The episodes can come suddenly and can last quite a while, leaving me completely worn out afterwards.
The doctors think all the stress my body has been under from the pneumonia, collapsed lung, infections, and long hospital stay may have made my dystonia much worse. When my body gets overwhelmed, tired, uncomfortable, or poorly, the dystonia can become very hard to control.
Because of this, the team are now slowly weaning me onto a new medication to try and help calm the dystonia episodes and make me more comfortable. It takes time because they have to increase it carefully and safely while watching how my body responds. Mummy and Daddy are hoping it will help me settle more and allow me to rest properly again.
Hospital life still feels a bit like a rollercoaster at the moment. One minute there is progress, the next there is another hurdle waiting around the corner. But I am still fighting, still pushing through, and still surrounded by so much love.
Mummy, Daddy, Dollie and Archie have barely left my side through all of this. They are exhausted too, but they keep cheering me on every single day, even during the hardest moments. I honestly do not know what I would do without them.
Thank you to everybody who continues to check in on me, send messages, pray for me, and support my journey. Knowing so many people are behind me means more than words can ever say.
Hopefully the next update brings even more positive news.
Love,
Lenny 💙