It's been a hard week. Like really hard. One of the hardest in a while.
We got some news we weren't expecting at Nolan's orthopedic appointment. It had been three months since we went and had his scoliosis checked, and in those three months, Nolan has accomplished a TON. We just knew this past Wednesday we would get good news. How could we not?
We believed this until we were handed a paper copy of his X-Ray with the curve measurement. 34.5 degrees. This was plus 4.5 degrees in three months. In the previous six months, the curve has "held," and there was no change. We knew that good news wasn't going to follow a curve that had grown by +4.5 in three months.
Dr. F started talking about how he felt Nolan would be a better candidate for back bracing and not backcasting. Casting is usually more helpful to kids that have an unknown cause for scoliosis and not kids (like Nolan) that have scoliosis associated with a syndrome (Nolan's Goldenhar Syndrome impacts his ear, heart, and even his spine).
We needed to go ahead and move forward with the bracing. The brace will need to be worn a minimum of 16 hours a day with hopes that "the brace will 'hold' his curve until either he reaches an age where back surgery makes sense, or he stops growing." This is where the lump in throat started and didn't stop until I had tears running down my face and asked Dr. F to repeat his last sentences.
Until he needs back surgery. That would mean it got worse, and the brace wasn't working. Once you operate on the back, the chances for multiple operations go up. A curve getting worse could put pressure on his heart and lungs. And since Nolan has low heart-function, this is a terrifying option.
Until he stops growing. That would be when he was 16-18 years old. Over half of his day, every day, for the next 15-17 years, will consist of wearing a brace (I still can't wrap my head around this timeline. I am 30. That is half of my life).
Dr. F is one of the best pediatric orthopedic surgeons in the country. He sits on the board of pediatric scoliosis research associations and has been a leading doctor in scoliosis research and development. He knows what he is talking about, but I sat there and questioned every word he said.
I couldn't understand it. How are we getting life-changing news again? Hasn't Nolan's life been impacted enough? Haven't our lives been changed enough? We were in shock.
So here we are five days into finding out this news, and to be honest, I am not handling it well. We are still in shock. We are sad. And we still haven't wrapped our heads around being okay with the unknown (again).
We will get there, just like we have a hundred times before, but this hit hard. And it still is hitting.
We know Nolan is tough.... but I don't want him to have to be any tougher.
We know we will find this strength to get through this... but I don't want to have to be any stronger.
At one point, I asked Dr. F if we were overreacting or if this was as impactful as we thought it was. He paused, looked down, and said, "This is very appropriate. This is a hard conversation. Being in a brace isn't 'normal' for a kid, but neither is back surgery. I'm sorry." It validated us but didn't make it any easier.
The next step is for Nolan to get fitted for a brace in a few weeks and have a spinal cord MRI at the end of the month. This will help determine is there anything else. As you can imagine, we are terrified of this appointment. First, because he has to go under again, and second because there is a possibility they could find something.
After that, we pray. We pray that this bracing works. We pray that Nolan beats the odds yet again. We pray he shocks doctors with his amazing progress, just like we have seen him do many times before.
We will get back to a place of acceptance, I am confident we will, but it will take a while, and we probably won't get there until he has been wearing the brace for a while and we see how he is doing.
It might sound like "just a brace," but it is a lot more than that.
I am sure, in time, that it will become "just a brace," but for right now, it feels a lot bigger than that.
Thank you all for allowing us some time to be vulnerable and upset. When you are told news like this, your life changes, and we are taking a few days to feel the impact of that.
Thank you for supporting us through this and each step in our story. There is much Moore to be written.