She's 1 and has a severe deformity of her upper spine and an additional associated problem.
We don't know exactly what's happening there but she has recently had an MRI scan and we will get the results in a few weeks.
It's rare but generally with this kind of thing surgeons like to wait as long as possible before surgery (if at all) and I really hope we can wait until she's at least 3. On the other hand I haven't seen many images online of children with problems this dramatic at this age.
That said, you wouldn't know if you didn't know what to look for, she was crawling and walking relatively early and is such an active happy little thing, it's not holding her back at all. We love her so much and are so proud of her. She loves to go around waving at everyone she spots and blowing them kisses!
Normally I can put it aside and just enjoy each day but I've had such a wave of sadness and worry tonight I just had to write about it somewhere. We're so lucky to have her and she's absolutely amazing but I'm so scared about what the future holds for her. I guess once we speak to the surgeon we will know more.
And objectively, I do think she is going to be just fine. She's doing so well already. It's just so hard and I don't know why it had to happen to her.
If anyone has any words of wisdom that would be greatly appreciated. She's meant to be in bed now but she keeps looking over at me and giggling! 😊