Star had another hospital appointment today and thankfully it was not as distressing as the last. I’m keeping a new blog to track her journey, not just with her neck but with her hypermobility and autism too. You can find it at www.zebrahooves.co.uk
We are now looking forward as the past week has gone quickly and it could possibly be just a couple of weeks before the halo is taken off. Also, the consultant has promised to get us a referral to a rhuematologist so they can take a look at Star’s hypermobility and hopefully get her a proper diagnosis.
We took the bus to the hospital again today, despite Star getting sick on the journey last week. I had hoped it was a one off, but she did feel sick again this week, just not as bad. I really considered getting a car so I could take her myself, but hopefully things will be better when the halo is removed, and that shouldn’t be too long now. Maybe I’ll arrange a lift for the next appointment. Anway, I need my money so I can finish carpeting and furnishing our new house, a car is a luxury we can’t afford right now.
There was an old lady on the bus who was very interested in Star and asked lots of questions. Now, I actually find this quite refreshing. I’d rather people ask than just look and quickly look away if caught looking. She’s not a monster, she’s receiving treatment and I’m happy to discuss it with anyone who asks. She does get a lot of stares off other children. I think they are really curious as to what it is on her head. When I took her to the theatre just after Christmas one little boy came up and started asking questions and his parent dragged him away apologetically. I don’t think you should apologise for a child’s curiosity.
We have a local mini supermarket close by our home and the guy behind the till rarely speaks to customers apart from to say how much is owed. If you ask him a question his answers are really short and to the point. I don’t think this is a bad thing (I’d probably be the same) but it is a sharp contrast to the other shops in the area where everyone is really chatty and knows everyone else’s business. When I went in the shop with Star he didn’t hesitate in asking lots of questions about her halo and what was wrong with her. It was obvious that English was not his first language which is probably why he doesn’t normally say much. I was pleased he finally spoke to us.
last week I was feeling down about it all, but now I believe the end is near and that the future will hold answers and support. I do hope I’m right.