The rest of our UK trip was a whirlwind - the days following the brain scan were filled with trips to the geneticist, neurologist for further opinion on the scan and a few trips to a laboratory for bloodtests. My poor Talia -constantly poked and priked. Taking blood was traumatic as she was still bruised from earlier tests and she was not well hydrated. Well to cut a long story short - we are back in Spain and are still seraching. The last few months I have just been focusing on physio, swimming and speech theraphy. We are at Aprona everyday now and are working hard to build up Talia's muscles. The geneticist has come back with results and so far all genetic testing is fine however he has pointed out that Talia's lactate levels are high, suggesting that there may be a metabolic poblem somewhere. Further to these findings, I called Materno Infantil who do not think the elevation is significant - however after Talia lost 100g a couple of weeks ago, I decided to go back to the Costa del Sol and re-visit a doctor I saw there in November. To be honest, the service I have received there has been far superior to the servicein Malaga. Yesterday they repeated the lactate test and within an hour had the results - incredible!! Unfortrunately it is still high and this means that we need to do further testing in terms of a muscle biopsy. Apparently there are only two places in Spain that do this so we may have to head for Barcelona.
The doctors yesterday were fantastic andthe nurses in the Costa del Sol were playing with Talia. There were about 3 doctors watching her and they even tried to analyse a new test that they have never done before - for once I felt as though somebody cared here in Spain. Finally I could see a team coming together.
The doctors also took spinal fluid yesterday - they did a lumber puncture. They warned me that Talia may suffer from headaches and backache afterwards. We were sent outside to wait as they needed to concentrate without us around. It is so difficult to watch your child suffer - I feel emotionally exhausted.
Last night was awful, Talia cried lots and was obviously in excruciating pain - I was beside myself as nothing would calm her. Ithink that holding her only worsened the back pain. Eventually we put on my mum's deep relaxation CD and within 10 minutes, Talia was asleep. We repeated this a couple of hours later and managed to soothe her again.
My poor baby - she is beautiful and I hate to see her suffer.
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