We’ve been working really hard on doing what we can at home, while we wait for Rehab. When we left the hospital we felt very lost, because we just didn’t know what to do or how to help Ethan regain his strength.
We’ve since then pulled together some resources and tools (like this water tummy time mat someone got him) and done our best.
We tried the mat today and he LOVES it! He was much more motivated to try and lift his head and actually did quite well!
He did have a seizure about 1 minute in. Something overwhelmed his brain. His nurse was over too and we aren’t sure if it was the mat overstimulating him, or if it was the work he was putting himself through, or a combination of the two. It’s hard to tell. We gave him a break and tried again. It didn’t trigger a seizure again, and we’re giving him short time spans to try the mat.
We need to keep working him, while balancing things as much as we can. We will take things as they come, and he will tell us how much he can do, how fast.
While the seizure quickly lessened the excitement in a sense, as we then had to focus more on that, we are taking this progress as a victory! It’s a reminder of his determination, strength and fragility all at the same time.
This journey is a rollercoaster, with hitting emotional highs and lows sometimes within 30 seconds but we are hopeful that over time things will settle a bit.
One day, one milestone at a time 💪🏻