"we're not out of the woods yet"

Those were the doctor's words. "We're not out of the woods yet".

This is a critical period for lung development and the brace is controlling J's spine while he grows so the doctor said he must stay in brace. It is normally recommended that they stay in for 18 to 24 months. We've only had just over a year.

When I said what his colleague had said last time-that J wouldn't have to wear the brace after the next appointment- he dismissed it, saying that that person was just a fellow ie a trainee. That feels awful- like I was stupid to believe him. He didn't say that but even so. It doesn't feel right that we should be led to believe/hope something which if he (our "proper" doctor) had seen us would never have even been mentioned.

J said he hates the brace to the doctor in no uncertain terms today! At least he is verbalising and expressing what he feels. Silly brace!

I said how he complains that it feels tight and the doctor said he'll get us an appointment with the orthotics department and J can have a new one.

J and I sat in the cafe afterwards and I asked him for a hug because I was feeling sad. He said he felt sad too.

I was so hoping he could start school in September without it. It makes being independent hard for J. Getting dressed without it is bad enough but he simply can't bend to put on socks or shoes when he's wearing it and it makes other items harder too. And going to the toilet alone is not possible either.

J didn't cry or react too badly (I did have tears in my eyes as we left the hospital- I'd had so many hopes that we could close this chapter).

In the car I said a few sentences so J could hear using what I've learnt in tapping but without actually tapping as I was driving eg Even though I hate my brace, I accept it is helping my back. Even though my brace means I can't bend, the curves are being controlled so I don't have to wear a cast again.

We need to work on positive feelings towards it so J can accept it for another 6 to 12 months.

And actually it's ok. A new brace won't stink for a while. It'll fit better so J will be more comfortable.  He can choose a different design (the vehicles have elicited a great response from others though so we need something equally cool to start school). And the independence thing will come.

I am learning how to manage my feelings as other parents boast about their children's independence- and we will get there eventually.

And at least J is enjoying dance and sporty things now he's a bit more flexible. We'll keep working at that.

Thank you for all the good wishes. Next time we'll go without building up our hopes too much. At least - and really this is almost the most important thing- the curves have stayed stable while in brace. The doctor said they are always unpredictable and there's no knowing when they might get worse, so we need to protect J's lungs while he grows.
And staying the same (visible curve on the xrsy but not anywhere near as bad as when we started) is a victory of sorts.

I am tired and waffly. Time for bed.  Especially as M's molars are emerging (several at once poor sausage) and he screamed for 3 hours last night despite milk and calpol!