Complex i, iii and iv and a new journey

Well, what a few weeks. Talia is slowly regaining her strength after we had a bit of a dip. I rushed her to hospital about ten days ago - she looked limp and floppy and she seemed to lose tone, especially in her mouth - eating and chewing seemed to cause discomfort and pain. So we took her to Costa del Sol where between a glucose drip and carnicor they managed to make her look much better.

I am just so grateful to the UMDF as there are no mito experts in this part of Spain and I gave the Drs the sample letter from the UMDF handbook. The hospital was great as they just prepared everything following the handbook advice. I feel scared sometimes though when my decisions are so important, so alone if the responsibility is on my shoulders. What if I make a mistake???

I can't help but think about what happens to mums who don't have these tools or don't use the internet because the web has been my saving grace.

I also received the muscle biopsy and it appears Talia has a multiple complex deficiency. Despite having something, I still have so many questions.

And this has led me to book an appointment in CLEVELAND CLINIC. I just really need to do this. I need to know that I am doing the best possible thing for the future. My Dr says the prognosis was better than anticipated but never mentioned what was anticipated so I am still a little in the dark. But I am re-inspired again - time to take the bull by the horns, time to find out more! So I'm off to the US in just a couple of weeks. I feel excited as I visualized this trip but also apprehensive - long journey with Tália but just feel I need to go.

Has been a hard week - have missed my Dad loads. He would have really been there checking out hotels, Drs and helping with the planning. I am so lucky though because my sister-in-law is coming with me and it is so good to have company and someone to be with, someone to chat to and some one to have a good laugh and glass of wine with!

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!!!!

Difficult week for Tália

Well Thursday last week was brilliant - Mum came with me to take Táli riding and Táli thoroughly enjoyed riding Deci, a big horse. We then went to Ana's and were absolutely amazed when she held on to a wooden trolley and pulled herself to a standing position all on her own. It was exciting and we were on such a high. But this is an emotional roller coaster, filled with high highs and low lows. I guess she was over exhausted but she caught a cold. Now a cold in a normal child is no big deal but in a smallie, it is. She has gone alll floppy and is finding it hard to hold her weight. Her appetite is poor and her muscle tone has been pretty low. So just need to keep on feeding her and keeping her going. Fingers crossed that things get better and that we don´t have to take her to Costa del Sol tomorrow.