This week has been tough, dare I say. I guess I am just a little exhausted between physio three times a week, swimming twice a week, speech therapy twice and then there's the other kids, the meals, the home and the business - trying hard to balance the balls but hit rock bottom when I ran out of nappies last Sunday. How on earth can that happen - I felt so frustrated that I had forgotten such an essential thing! Sometimes big things don't get you down - its the little niggles that tip you over. But hey, I'm upright again (well more or less). Other mums going through this will know how I feel (I hope). There are good days and bad days - days when I can walk around with a bounce in my step and days when I feel I am living a dream.
On Wednesday, we were due at Materno Infantil again - yep my favourite place. Its crazily chaotic - so many kids needing attention. The hospital is reknowned for being one of the best pediatric units in Andalucia, yet the decor and surroundings are pretty shabby.
We left at 7:30am on Wednesday morning from Mum's home as my parents took the girls to school for us so that we could head to Malaga. At 9:40 I get a phonecall to say my 10am appointment is cancelled and to just turn up for the 12pm one. So two hours to kill in Malaga with a tired baby!! My husband walked around in mobile office mode speaking to clients, negotiating deals and running the business. I used the time to get some of Talia's b-day pressies ( will be 1 in two weeks!) and buy my eldest daughter a much-needed bathing costume.
Once at Materno we waited patiently for our 2 appointments - one at 12pm and the other at 12:10pm. We got in to the first at 1pm - it was fairly run of the mill. TAlia weighed 2.670kg and height is 62/63cm. Anyway after that we were rushed off to the neurologist. This was the appointment we were supposed to have at 10am but apparently th esecretary cancelled the wrong doctors patients so we could have turned up at 10am - what a mess. Anyway the Dr looked at the brain scan that we had from the UK and concluded that she saw some retardation in the myelinization of the brain - something the DR at Costa del Sol had mentioned to me. She said she suspected a metabolic illness. We then opened up to her and said that we were undergoing tests in the Costa del Sol and that lactate levels were high - an indicator used in metabolic conditions. She was in agreement with our Costa del Sol Dr and felt that we needed to do a muscle biopsy.
What she said actually was pretty scary and uncomfortable. She said that whilst some metabolic problems could be cured, the majority were extremely complicated and progressive an dwhist our daughter was progressing, this could just suddenly stop. To be honest, I felt quite ill. But at the back of my mind i kept telling myself - this is all guess work, nothing has been proved and she is getting better each day. Anyway we should do the muscle biopsy as it may be curable but we need to move fast as any damage to date cannot be erradicated but future damage can be avoided. So now I have this little bee inside me that wants to move so fast but you know what a process like this is like. I am just one mother fighting her corner.
We t hen went on to see an endocrinologist who agreed that metabolic illness was a concern - however the digestive unit did not think that the figures were elevated and that she would just need growth hormone - I pray that they are correct.
It was quite a day and we arrived back emotionally exhausted - just days ago we thought Talia looked great - now she may have a grave illness. We need to be strong and positive as that is the only way through this.....
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