Tuesday, November 07, 2006
We have been trying to keep our chin's up lately, with not much success. It is so upsetting having Sheena regress with her development thanks to her Infantile Spasms. At the moment I feel that we miss out on all the fun stuff that most parents have (and we used to until she was six months). Simple things like picking out toys that she would like. Sheena isn't interested playing with toys at the moment, so there is no use. All she wants at the moment is to be cuddled and comforted. The Down Sydrome thing doesn't worry us much any more, its the IS that keeps on hitting us like a tonne of bricks everyday.
Part of me thinks that Sheena is starting to get better. She is starting to grimace less now that she's weaning off her Pred medication, but she is still grimacing a lot. I checked on the IS Yahoo Group, and other parents found that their baby also did hard-blinking while on the Pred, then it went away. Lets hope.
The back-arching has gone. A couple of days ago she had a positive UTI on a urine test that I do at home. I rang the Dr, and he said to go get it tested properly at a local clinic that night, or wait until the next morning to get it checked. I am getting a lot more relaxed about these things, so I left it, and checked it again myself the next day, and it was all-clear. Perhaps that might have caused the back-arching. Tonight her glucose is up again, but I'll give that another day too.
Her new thing is holding her head with her hands. It looks like it could be a headache or ear infection, but could just be her new 'thing'. It has been a couple of days, so I might follow up on it tomorrow if she is still at it. She only had 3 bottles and 2 small breast feeds today. That is hardly enough for a 10 month old baby. She would take the bottle, suck on it a couple of times, then reject it. It makes me think its her ears, because it would hurt to suck.
Hubby and I both noticed that her face swelling is starting to subside. That is something to look forward to. She is such a pretty poppet, but the moon-face has not been her best look.
It's Melbourne Cup Day today. We were busy doing home maintenance, so didn't take much notice of the races.