Nick went a week without any pain medicine, while we were doing 4 turns day. Wait, we don’t do turns! Still in external fixator mindset. 4, .25mm remote control magnet lengthenings is what we were doing till yesterday when we only did 3 because right about the time last night in which we needed to lengthen he started having spasms. He also did a lot more walking yesterday than he has lately since we went out for Charlotte’s birthday and he had walked more on Sunday as well because we went to a community brunch. It felt really good to get out.
Spasms though, are to be expected. It’s still hard when it happens and your child is in pain and you know the meds wont kick in right away. Thankfully it wasn’t too bad and today we will go back to 4 lenghenings.
In other big news Nicholas got an acceptance letter to the middle school program he wants to attend. He was really happy to get the news! Here is the program mission statement to give you an idea of what it’s about:
“The International Baccalaureate aims to develop inquiring, knowledgeable and caring young people who help to create a better and more peaceful world through intercultural understanding and respect. To this end, the organization works with schools, governments, and international organizations to develop challenging programmes of international education and rigorous assessment. These programmes encourage students across the world to become active, compassionate and lifelong learners who understand that other people, with their differences, can also be right.” – IB Program Mission Statement
Today he is back to no pain. Steven did his first lengthening at 4am and I will do the second at 10am. We are trying to spread them out more today. I am encouraging Nicholas to eat a banana every day to help with the spasms. We’ll just see what happens and try to keep to the 4x per day schedule or call the RIAO. I am not even sure if skipping last nights last lengthening was the right thing but in the moment it’s what Nick wanted to do and giving him control is important. Although pain or no pain this show must go on. Thankfully we have medicine to help make it possible, if it’s needed.