Today Noah finally had an appointment with a Dr that we have waited over a year to see -the spine specialist from Melbourne. For years Noah has had scoliosis, but over the past 12 months it has gotten a LOT worse with him massive growth spurts because of him going through precocious puberty.
We have done all that we could to keep his spine mobile - putting rolls under him when laying on his side, positioning him as well as possible, using the second skin body splint (which he grew out of way too fast and hasn't worn for around 8 months or more now). No matter how hard we tried, we couldn't slow the curve down.
I hate looking at the curve and hate thinking about how much of an impact it haves on Noah's health and how uncomfortable it makes him. Before our appointment today Noah had a spine X-ray. It's one thing to see the curve in Noah's spine when you dress him and hold him, but seeing it on an X-ray just makes it seem so much worse.
After the Dr saw Noah and looked at his X-rays he said that really for Noah it was 'all or nothing'. 'All' meaning a very major operation to place steel rods in his spine to straighten it up or 'nothing' meaning just that - to leave things how they are.
He said that the operation is huge and very painful and that it would be very risky and wouldn't be sure if Noah would actually make it through the operation and if he did he wasn't sure whether he would cope with things after the operation with the risk of aspiration etc.
If we did do the operation it would mean a lot of pain and he wasn't sure that the gains were worth it. He would have a straight spine, but it wouldn't necessarily lengthen his life or give him a better quality of life, but may do the opposite to that because of the pain he would have to go through.
It's a very hard thing to listen to a Dr tell you these things, although you already know it. I know that Noah won't live long but when a Dr reminds you of this it reminds you again of that first time you are told - almost 9 years ago.
The Dr was lovely and said that it was up to us, but wanted to give us both sides and if it were up to him he would leave it. I was glad to hear that, as that is what we had thought already as we didn't want to put Noah through something like that. I just hope that the curve will slow down as his growth slows down so that it doesn't impact on his health anymore than it already is. Already we are noticing it's impacting on his lungs and breathing and causing more reflux.
On the positive side (yes there is one!) the Dr pointed out that Noah's curve starts at the top and comes back around to almost the same spot at the bottom which means he is able to sit straight and comfortably. He said if he wasn't able to sit comfortably then we would have to look at considering the operation more. When Noah is in his wheelchair you actually can't tell that he has such severe scoliosis which is a blessing.