I've just had a phone call from Hope's lovely neurologist (dr Ch). He wants to see her. Tomorrow! He said he has some results from some blood tests he wants to discuss. Plus do some more tests. Boo hoo, I hate blood tests. Plus he wants a urine sample. So it may be a long afternoon :0(
He asked how Hope was doing too. I told him that I had upped the meds again today (that's 800mg now) and that the seizures were still creeping up, and hope is having between 30-40 spasms a day. He said that's too much still, so I think we may end up discussing changing the meds a bit earlier than originally planned.
Oh god, I am so scared. I was shaking after the call, but now I just want to cry :0( but can't because I don't want Jordan and max to worry .
Earlier today we had the leader and a playworker round from koalas (the special needs playgroup). They were both lovely and I'm looking forward to starting In September. It will be nice to meet parents in similar situations and their extra special babies and children.
They asked me whether I had made a claim for disability living allowance and carers' allowance. To which i replied I hadn't. I guess that's because I don't want to have to. I'm still hoping I suppose that she'll all of a sudden be fine. That she won't be entitled to it. But who am I kidding? Only myself! And since my maternity money ends this month, and there's no way I can return to work yet, the extra money will help. It's just I don't want to be eligible for it :0( either of them; disability allowance because it means hope is disabled, and carers' allowance, because I am not her carer. I'm just her mummy
Oh, for an ordinary life ... :0(
1 week ago