Tuesday 5 May 2009
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!!!!
Subscribe to:
Post Comments (Atom)
3 comments:
Hi there I got your link from the comment you left on Courie's blog. I hope you dont mind me coming and taking a peak. Your little girl is gorgeous by the way.
We are still evolving our diagnosis but were thrown into the weorld of Mitochodrial disease in July last year when the MRI Eve had showed lesions consistant with Mitochondrial Cytopathy.
What a rollercoaster this journey is.
Just wanted to send you some love and hugs. We are in England so a little closer than our USA friends...still too far to call in for a coffee sadly. Mitochondrial Disease is a lonely diagnosis as we have noone local to us to talk with.
Sending al our love anyway.
Tina
Hi Tina,
Thank you for your lovely message - and whilst we can't get together for coffee, the UK just sounds so much closer. Perhaps we can chat over the phone some time. Where abouts in the uK areyou based. I have lots of family and friends there and do go over from time to time.
I just got home from hospital yesterday - Tali needed to be put on a drip. She had a common cold but then things got complicated when she stopped eating and started losing tone. The hospital here had never seen a mito case like this before and basically thanks to my UMDF handbook, we followed their advise in a sample letter that they have on their site. I just hate to think what would have happened if I didn't have the internet. However the hospital were fantastic as they let me manage how long we stayed for - whilst its scary cos I'm alone, they are supportive and open tolearning as we go.
I finally got muscle biopsy results but quite frankly, it could be written in Japanese - the Dr in Barcelona didn't exactly explain in layman's terms. Anyway, the overallidea is that there are deficiencies in complex 1, II and III, III and IV.
Anyway, enough waffle - how are you doing - you have been through so much. How is Eve?? Is she very low weight like Tali. Lets keep in touch. I am seriously so close to packing my case and going to the States for a second opinion. What do you think??
Maybe we can piece some of this together - no one here has mentioned oxygen (and I think Tali probably needs some)or sleep disruption checks.
Anyway, my email address is info@hamilton-homes.com. You can contact me directly as I check them all the time.
Thank you for finding me - you really do seem to be doing so well - I read a little about what you have been through but am going to go back and read some more - I just needed to write to you first. I couldn't wait another minute. Maybe we shouldbuild up a European network for mito mum's???
Loves Shani
hi, I have emailed you, but my email often ends up in spam folders so just wanted to check you got it?
my email is tdlhillier@yahoo.com.au
hope you are having a reasonable weekend and Talia is feeling a little better. We are hoping to seize the day and go and see a friend who is holidaying near us. Church first then off to Centre Parks, Hope to talk to you soon.
Hugs
Post a Comment