Its time to move on and take some action

Well, I have once again reached a point where I feel I need to move forwards - it has been nearly 4 MONTHS since Tália's muscle biopsy and still NO FORMAL RESULT - am I being too patient??? Time to get the ball rolling. I refuse to sit and wait!!! I am so relieved to have made contact with the 'Walking with Giants' Foundation and will be joining their annual family conference. It will be nice to meet other parents going through a similar thing as ourselves. I think we need to look outside Spain as I still feel things are not moving fast enough here. The therapy and physio side is going well but dare I say I think that we should probably take a trip to the States. I have started making enquiries and writing to different doctors but before any progress can be made - I need the muscle biopsy results!!!!

Muscle biopsy in Barcelona

Well its been a long time since I wrote - over a month. Unfortunately my beloved Dad slipped away from this world on the 23rd December. It has been therefore a difficult month - whilst he passed away peacefully and beautifully with the immediate family around him, there is an aching feeling of loss of a loved one -like part of your body has been torn off. We all miss him terribly but also understand that he is at peace - his body was riddled with cancer and as he slipped away, the expression of suffering turned to one of freedom.

Well I miss him terribly as I was his little princess but that is another story for another time and really this blog is to focus on Talia. Now, especially after my Dad's passing, I am determined to do what I can to help her. I want to get her up and walking and I have many goals.

On the 19th January, Andrew and I were in Barcelona, hospital San Juan de Dios to do a muscle biopsy. The muscle biopsy is the final test necessary to find out whether Talia has a mitochondrial disease. As yet we have no diagnosis.

I have to admit that listening to her cry through the biopsy was awful, yet I guess a good sign that she was conscious and has a fighting element in her. Still this time it seemed harder - I guess after everything that's happened with Dad, I feel more sensitive. Despite the latter, I firmly believe that he is our guardian angel and that he is protecting Talia. She was so close to him and many an afternoon she would lie beside him and have a her nap - right up till the day he died. She would curl up to him and fall fast asleep. It was beautiful to watch this bond.

Anyway the specialist in Barcelona seems convinced that Talia has got some mitochondrial problem but we remain unsure until the biopsy comes back. The doctors in Barcelona were amazing - so warm and professional and caring.

Today I have been to Costa del Sol to remove Talia's stiches (about 4 on her leg). They removed them but the wound still looks quite fresh. My best friend Susan came with me and we had to hold Talia down whilst two nurses worked to remove the stiches. My poor baby - I hate to watch her suffer.

Having said that - she has an amazing character and energy and within half an hour was laughing and smiling - she is just so adorable and a real gift.

Anyway more to follow tomorrow - time to get some sleep! I am so exhausted - some of this may not make sense!

Moving Forwards

Well - its been some time since I've updated my blog. It has been quite a month with Dad being unwell - full of up's and down's, a real roller coaster ride. But that's another story and perhaps some day, I'll tell it but not now.

Tália has been on her gluten and dairy free diet for a month now and so far so good. As a mum its hard to tell whether its the diet working or if Tália is naturally just growing up but I have to say that a few changes have been noted. Firstly, she seems much happier in physio and speech - she no longer cries so much and seems to be genuinely excited and happy. Secondly, she seems to be sturdier on her feet - not walking but standing. Thirdly, she seems to be communicating better - a few more sounds and just an overall awareness and fourthly she seems taller. So all in all a positive step forwards.

We have made the decision to send her to nursery 3 times a week as of January. I have had this itch again that has made me feel as though things need to move forwards again - we cannot stay stuck in our ways. I feel that interaction with other babies and toddlers is what Tali needs and that will give her the inspiration to walk and talk.

I'll find it hard to leave heras I just adore being with her but I need to help her to adapt to society and expose her a bit to the real world. The toddler group has opened my eyes and I have seen how happy she is there. Also in her physio sessions in San Pedro, her cousin, Indy has been coming with us and now Tali loves it - she actually shows off a little to her baby cousin!!

We have also finally received an appointment for a muscle biopsy and are heading for Barcelona mid-Jan. So I hope to continue posting through the next weeks.....