Eight months ago today my daughter woke with a stiff neck. It got worse, I took her to the GP. It didn’t get better so I took her to A&E, and now, eight months later things are still no better.
At first she was treated with a neck collar and regular physio therapy. That didn’t work and she actually got worse so she was given a manipulation to put the bones back in place and fitted with a halo to keep her neck straight. This took three months, thirteen weeks to be exact. The day the halo came off her neck twisted again.
Yesterday we found out that one of her bones had deteriorated, probably due to rubbing against another bone when her neck was at it’s worst. Now the bones will not stay in place without help. This means an operation and the return of the halo.
Star cried when she heard the news. She had gone into the appointment her bubbly cheerful self. She had picked up a Stop Smoking leaflet in the waiting room and told the nurse that she was going to give it to Daddy because she wanted him to quit smoking. She was chatty and happy. We’ve been in that consulting room so many times, we’ve been given bad news so many times, but nothing has phased her. Until today. Today she cried. I cried with her, how could I not.
She wants this to go away now. She loves the hospital, she loves the nurses, they all make such a fuss of her. She actually enjoyes her stays on the ward.
She’s had enough now, she wants it to stop, she wants to be fixed, or left alone.
I’ve had enough too, it’s not easy seeing your child suffer. It’s not easy transforming your life to fit around a child that is sick.
It’s scary thinking what might happen.
Very scary, but you have to hide it for fear of scaring her.
I hope and pray that my little girl will be fixed soon and all this will a nightmare of the past.
Was so sorry to hear this news, really feeling for you. Hope they start to treat you all better and do the best they can. Hope you are also getting extra support and help from somewhere… make some calls, or I will if you need me to? x
Thanks Steph x I'm still waiting to hear from the hospital, I hate the waiting 🙁
oh Anne – so sorry to hear this. Its been such a tough journey and I'd really hoped and prayed it was over when the halo came off. You guys are amazing and I'm sure it will all soon be a nightmare of the past as you wish it will be – keep staying strong in the meantime and send our love to Star. xxx