I have to confess, the past week or so I've not cleaned them daily. Not a good idea. Just before Lucy's bedtime yesterday she told me she could feel something on one of the points. I took a look but it was hard to see because it was one of the back ones which is covered by hair. So I cleaned it and found it was covered in dried blood and gunk. Of course I cleaned the rest of her points too. Then this morning when she got up, one of the points on her forhead was oozing gunk. So now I'm being extra vigilant in keeping them clean and she will have to go the hospital if it doesn't stop in the next 24 hours.
This morning I gave her a bath.
I use a black bag and wrap it around the vest, tucking it in at the neck and sides and finally rolling it up under the vest at the bottom. Then I cover her shoulders with a waterproof cape that I use for protection when dying my hair. She sits on a small seat in a few inches of bath water and I was her down, well the bits of her I can actually see. Then I wash her hair by pouring water from a cup. The shower would be too powerful and we might get the vest wet. She cannot hold her head back with the halo on, so I have to be careful. We use baby shampoo on her hair, not ideal because it really is for babies and not much use at all for getting an eight year olds long locks clean. The hospital suggested baby shampoo, but I'm thinking I might try some Simple shampoo instead, something really mild and gentle but actually meant for washing hair, not baby fluff.
Lucy likes to suck on a flannel while I wash her. This is because she gets some sensory comfort from it and it distracts her from my washing. It doesn't hurt her washing her hair, but it can be uncomfortable and feel strange. It's like when she was a baby and hated having her hair washed, I would give her a flannel to suck on then.
After her bath I have to make sure that both her and the halo frame and vest are completely dry. I can use a hairdryer so long as it doesn't get to hot. I was quite happy that her points were really clean afterwards, although her forehead needed a little attention to get clean while in the bath. I'd really hate for her to get this far and end up with an infection.
We've still not been given an appointment for her CT scan yet, I hate waiting on the hospital to call, although I have to say the radiology department are usually pretty good.
The pain in her groin is still there, but it comes and goes and doesn't seem to be bothering her too much. She doesn't seem to be getting many headaches now either which is good. She can also get out of bed by herself now, she just wriggles her way to the edge and lowers her legs with the momentum giving her the strength and balance to lift her upper body up.
|two of the points|