Daddy's Girl

Well just when I think that its all onwards and upwards, there's a kink in the road. My father has looked under the weather for a while and I have been worried about him but I guess that since mum's been away he has kept up a brave face so that not to worry me. Mum arrived last Thursday and to be honest I felt a huge wave of relief to know that she would be there with Dad. I have spent some time with Dad but I am his little girl and I find that instead of looking after him, he just looks after me - he goes to the supermarket t buy special food, he comes with me to collect my girls, he refuses to let me pamper him.

However as we headed to Malaga airport to pick mum up, he looked greyer and generally unwell and at that point I knew that he had kept going and now felt able to let his guard down. Sure enough that evening, we rushed him to hospital.

Its been a tough week - seeing my Dad, for he is the perfect Dad to me in hospital. He is just right by my side with Tali, so actively involved with my life and I just want him to be well. The Dr's have performed tests and we have still to wait for the results so I can't say much at present. He is unable to leave hospital until his cough goes - he has an awful cough but we are hoping that that is just due to a chronic bronchitis.

Unfortunately he was rushed into hospital on the eve of my daughter's birthday which he didn't want as he wanted to go in after her birthday. Thankfully he did go in though because he did need medical help. This weekend of birthday plans has been the perfect distraction for my kids but extremely hard for me to try and stay with it, together and exuding joy and happiness. But we did and the girls had a great time - a big sleepover and a trip to McDonald's coupled with watching High School Musical in La Cañada.

Yesterday I felt a huge relief as I went to the hospital and my Dad looked much better - so much more colour in his face and chatting more. He still can't leave but that's cos his cough is still bad but hopefully he'll be out soon. Mum has been by his side at hospital - literally she stepped off the plane and into the hospital. The test results will be out soon but I remain positive - I spent 3 months waiting for Tali's test and despite Dr's thinking the worst, they have confirmed that she does not have Pyruvate Dehydrogenase Deficiency. So worrying about results prior to their release seems ludicrous.

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.

Baby Talia

Well its been a while since I last posted in my blog and that´s cos its been quite a tough time for me. As you will know if you have read this blog, I was on bed rest cos Talia wasn´t growing within my womb. I don´t know what went wrong but it seems to have all started at 26 weeks when I was on holiday in HK and bled substantially - since then baby´s size and rate of growth was a problem. All seemed more or less ok for the first 6 weeks of Talia´s life - she was putting on weight and appeared to be thriving, but then she started to miss key developmental milestones and since then I have been trying hard to find out what she has and how I can help her.

She is a beautiful, gorgeous baby but at 7 months she only weighs 4.45 kilos (with clothes on!). She eats and sleeps but does not grow.

I am going to go back and post what has been happening, the research I have done and the doctors I have seen in the hope that women in a similar position in Spain can hopefully learn about the system etc through this blog. I also hope that anyone reading this who recognises signs or symptoms can contact me or comment and help me to help my darling Talia.