Woke up this morning determined to call up some doctors and chase them up on bits and pieces - the UK Dr to chase him up on a test that I've been charged for but have never received any results for, Costa del Sol to find out what's going on with the muscle biopsy and Materno Infantil to give latest lactate and spinal fluid results to the neurologist we see there. So, after sending my two eldest girls to school and after feeding Talia a good breakfast. I placed her in her donut to play and started some phonecalls. This donut thing is new - before she couldn't hold herself up in there and I would have to lie her down on cuhions but today she sat pretty well and played with her toys. She is great on her own as it gives her the feeling of independence.
Anyway I spoke to the Dr from Costa del Sol and he told me that they have decided to do a skin biopsy on Monday at the Costa del Sol. He stated that it was est to start with this - it should be just like an injection with a fine needle. He said that with a muscle biopsy they would have not been able to use a local anaesthetic as it can affect the sample and that after what I had told him about Talia's sedation with the MRI she had in February, they decided it may be best to start with a skin biopsy.
I spoke to him and asked him some questions like ,
'Do you think she definitely has a metabolic illness?
'What will we be looking for in a biopsy?'
'Are there curable metabolic illnesses?'
'How serious an illness could she have?'
He was very supportive and answered the questions to the best of his ability - although it was a pretty negative picture. He said that they were pretty sure she probably was suffering from a metabolic problem as the lactic acid in the spinal fluid and blood lactate were elevated, that they were looking at several fairly serious illnesses and the extent that Talia was affected would just depend on exactly what type of illness she had - some patients die in early infancy and others do not get diagnosed until adulthood - so I am just praying Talia's condition is not so serious.
Anyway I also spent time on the web checking out metabolic conditions. I felt stronger this morning and on days like this I choose to do research as most of what I read is pretty awful. However I want to know what is going on and I want to know what questions to ask and regardless of what any doctor says, I am going to do my best to build a good life for my princess.
I recently saw a natural doctor who said that he felt that Talia would struggle through her first five years but be fine thereafter - this thought gives me so much hope. I am not one to give up. Th estories I've heard from friends and physios about miracles that occur everyday - children who are told they can never walk but do, children who survive against all odds, these give me hope.
Anyway, next appointment Monday - I must say that I finally feel that I have a good team of doctors there - they are quite caring and supportive and very professional. If any mum needs help on who to se, please contact me.
Anyway must sign off - girls are singing in a theatre production tomorrow, need ot ensure their clothes are prepared - the joys of motherhood!
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