Materno Infantil

The Materno Infantil was packed –we turned up with a stools sample and starving baby (had to leave her without food again). The doctor we had seen privately looked after us – he was amazing. He managed to pull a few strings and his colleagues saw us immediately – something unheard of. Some of his colleagues rubbed in that they were doing it for their friend as he was worried about Talia. First the endocrinologist saw her and to be honest she looked baffled – she said that Talia had no obvious hormone problem. She ordered some blood tests –MORE blood tests – My poor baby! Then the neurologist saw her. She didn’t say much, just that she thought that Talia’s problem was connected with the central nervous system and that she needed to have an MRI and see an ophthalmologist who would look into her eyes and check the nerves at the back of the eyes to see if there was any damage. We asked when this would happen and she said that the MRI appointment would take ages to come in and the ophthalmologist one would probably take a couple of weeks. I asked numerous questions about my daughter – would she be able to walk? What would her future be like? How weak was her muscle tone but the neurologist looked at me and said that she couldn’t say and just to focus on the present.

It was a long day and there was a lot to take in. I thought the Materno would have all the answers but I left realizing that Talia definitely was not a text book case – we left it that we would go back after a month. We´ve been back but there is no more news – the TSH stills seems erratic but not enough to merit treatment. The neurologist wont see us till we have the MRI – the appointment still has not been given to us and I do not want to push for it as they will have to sedate Talia for about an hour. If there is any damage to the brain, I don’t think I would be able to do anything about it anyway so I prefer to wait till she´s older. The positive is that numerous things have been eliminated – one of the main things being cystic fibrosis.