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.
Thursday 29 May 2008
Wednesday 21 May 2008
Back to blogging
Well the days go by and each day I have the intention of signing on and writing but life is pretty hectic and full for me at the moment. I am juggling three kids alongside attending sessions at Aprona each day and trying to help my husband by working from home whenever I have spare time (basically after kids go to bed!). Anyway I hope to continue my story and I go back now to our time in the UK. Below is an extract from my diary of a day that still sticks out in my mind - the day of the MRI scan:
Day 6 UK
An extract from my diary
Woke up bright and early today – my stomach was in knots. This was the big day. I prayed so hard. We parents make so many decisions and sometimes the responsibility is terrifying.
Two coffees later, we found ourselves in the paediatric ward of the hospital. We read through numerous text messages from friends and family all sending well wishes and love. These little messages are so wonderful, keeping us constantly aware of the love and support we have. The sky was blue and it was a crisp day – I was longing to go for a walk outside and stroll around with Talia in the pram
My husband and I watched everything and everybody like hawks – we watched the quantity of sedative etc. I was really quite anxious but tried to keep my façade of looking cool, calm and collected – inside I felt slightly sick and jelly-like. Talia was weighed and she is a total of 4.180 kilos.
We were taken into a room where a drip was placed into her hand – this was horrible to watch but luckily the doctor was so professional about it that it was soon over. Talia looked a sorry state with her arm all bandaged up. Luckily the sedative worked quickly and within minutes she was fast asleep. We were given a special machine attached ot her tiny thumb which gave us a reading of her pulse and oxygen absorption level. I watched the screen and refused to take my eye off it.
Seeing Talia sound asleep, the nurses managed to bring our appointment forward to 10am. I was allowed into the room with her during the scan and after answering a few questions I was allowed in. We had to lie Talia on the bed and cover her ears with special headphones. MRI scanners make a very loud noise and this is why Talia, myself and the nurse all had to wear headphones. The room felt cold and icy – thankfully, I had brought Talia’s snugly blanket.
The scan was, thankfully, over quickly. I just kept praying visualizing, my grandfather, great uncle and Guru watching over Talia and protecting her. She looked so vulnerable.
Now I’m back upstairs sitting next to my Talia waiting for her to wake up. I have never been so desperate for her to wake up before. The doctor has just come up to see us and says that he’ll get back to us later this afternoon regarding the results and how to take all this forward.
13:15 – Here we are still waiting for Talia to wake up – she is still sleeping and Andrew and I are a little nervous – her eyes are starting to flutter. My husband has just spoken to my mum and she is doing some ‘Om trayam bhagams´ ( Sanskrit mantra for Talia’s well-being and protection) with my sister in law. I really don’t like this sedation – I just want my smiling Talia awake again – she has been under 9ish.
21:00 Talia finally woke up around 16:30 much to our relief – we were worried we would have to stay at the hospital. What a day it has been, I am emotionally exhausted. Thankfully we are staying with my brother-in-law – its good to have supportive family around. My sister-in-law has just been a pillar of strength and has kept my other two girls busy – they have had a wonderful time – walks through the parks, playing with squirrels and sleepovers with their cousins. The doctor came back with the results and much to our relief there seems to be no gross damage. Despite the latter, he would like us to see a specialist neurologist in Harley Street tomorrow. Right now, I am so exhausted and need to lie and watch my baby.
Day 6 UK
An extract from my diary
Woke up bright and early today – my stomach was in knots. This was the big day. I prayed so hard. We parents make so many decisions and sometimes the responsibility is terrifying.
Two coffees later, we found ourselves in the paediatric ward of the hospital. We read through numerous text messages from friends and family all sending well wishes and love. These little messages are so wonderful, keeping us constantly aware of the love and support we have. The sky was blue and it was a crisp day – I was longing to go for a walk outside and stroll around with Talia in the pram
My husband and I watched everything and everybody like hawks – we watched the quantity of sedative etc. I was really quite anxious but tried to keep my façade of looking cool, calm and collected – inside I felt slightly sick and jelly-like. Talia was weighed and she is a total of 4.180 kilos.
We were taken into a room where a drip was placed into her hand – this was horrible to watch but luckily the doctor was so professional about it that it was soon over. Talia looked a sorry state with her arm all bandaged up. Luckily the sedative worked quickly and within minutes she was fast asleep. We were given a special machine attached ot her tiny thumb which gave us a reading of her pulse and oxygen absorption level. I watched the screen and refused to take my eye off it.
Seeing Talia sound asleep, the nurses managed to bring our appointment forward to 10am. I was allowed into the room with her during the scan and after answering a few questions I was allowed in. We had to lie Talia on the bed and cover her ears with special headphones. MRI scanners make a very loud noise and this is why Talia, myself and the nurse all had to wear headphones. The room felt cold and icy – thankfully, I had brought Talia’s snugly blanket.
The scan was, thankfully, over quickly. I just kept praying visualizing, my grandfather, great uncle and Guru watching over Talia and protecting her. She looked so vulnerable.
Now I’m back upstairs sitting next to my Talia waiting for her to wake up. I have never been so desperate for her to wake up before. The doctor has just come up to see us and says that he’ll get back to us later this afternoon regarding the results and how to take all this forward.
13:15 – Here we are still waiting for Talia to wake up – she is still sleeping and Andrew and I are a little nervous – her eyes are starting to flutter. My husband has just spoken to my mum and she is doing some ‘Om trayam bhagams´ ( Sanskrit mantra for Talia’s well-being and protection) with my sister in law. I really don’t like this sedation – I just want my smiling Talia awake again – she has been under 9ish.
21:00 Talia finally woke up around 16:30 much to our relief – we were worried we would have to stay at the hospital. What a day it has been, I am emotionally exhausted. Thankfully we are staying with my brother-in-law – its good to have supportive family around. My sister-in-law has just been a pillar of strength and has kept my other two girls busy – they have had a wonderful time – walks through the parks, playing with squirrels and sleepovers with their cousins. The doctor came back with the results and much to our relief there seems to be no gross damage. Despite the latter, he would like us to see a specialist neurologist in Harley Street tomorrow. Right now, I am so exhausted and need to lie and watch my baby.
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