Doctors

The last few months since we've been out of hospital have been a blur of doctors.
It started with the physio at the hospital when she was three weeks old. What can a physio do to a 3 week old baby - nothing! They really just had to wait until she was a little bit older. At that stage she hated being unwrapped and she still had her jitters so there really wasn't anything they could do.
The next person we saw was the speech pathologist. A lot of people get confused as to why we would see a speech pathologist if she is so little and can't talk - its so that she can coordinate her mouth muscles to be able to suck on her bottle. We started seeing the speech path at 5 weeks and it was then that I decided that I could stop breast feeding. It was a tough decision cause I'd wanted to breast feed all along, I wanted to give Holly the best I could give. It was hard to stop. But I know its been in her best interest to stop, her growth charts are amazing, you can see on them before vs after sorting her feeding out. The chart just jumps up into the normal range the week after we got it all sorted. So much of a relief, at least we know she is getting her nutrients. We saw the speech path last week and we've got another appointment in a couple of weeks so I'm sure you'll hear more about it as time goes on.
The neurologist (Dr S) was next. I was a bit nervous about seeing him again. He was a nice enough bloke. He asked me if I had seen Holly's MRI. I said no and no thank you. I didn't want to see it. From a biological point of view I think it would be very interesting, but from a mother's point of view, no thanks. I think I'd concentrate on what is not there rather than Holly. I don't need to see it, I think it would just upset me. Dr S explained that her carotid arteries got cut off as her head grew. As her skull grew at about 20-23 weeks the arteries that lead into the skull were severed. He said that it could have been something as simple as the placenta laying on her head wrong, its not genetic at all and its quite a rare condition. The technical name for it is hydranencephaly. Basically it means that her brain didn't grow and that cerebral fluid is in her skull. Dr S explained that she has a little bit of brain in the front of her skull, a tiny layer across the top and a little bit in the back. Most of the docs we've seen haven't been able to tell us what Holly is going to be like other than to say that she won't walk or talk. Each and every case is different so we just can't generalise. Dr S doesn't think I'll want to go back to work. I'm not sure. I can understand his reasoning though. Holly has just so many appointments. There is not a day that goes by that we don't have something to do with therapy or doctors or something. Dr S was saying that physically having someone mind Holly won't be all that bad, it will be whether I am ready to let someone else take her to all those appointments - am I willing to give that part of it up, do I want someone else hearing the information about her that I need to hear. I totally agree with that.
After neurology was Vision Australia. What an amazing organisation they are. I cannot rate them highly enough, amazing. Our early childhood specialist, R, is truly a fantastic man. Right from the first moment he met Holly he was so kind and gentle with her. He gave us such reassurance that we aren't the only people in the world.
I'll edit more of this one later - off to go out for the evening.