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!
8 comments:
Hi, I'm an adult with mito. I have complex I,II, and V problems. So exciting that you will be going to Cleveland! My home is in Indiana, so not super far from Cleveland (not close either). If the Dr(s) are okay with it I recommend recording your visits. Rachel
hugs thinking of you.
Thank you so much for your comments - Tina, thanks for so much positive energy. Thanks for your advice Rachel - I will ask if I can record the visits. I am so interested to know more about complex deficiencies so if you have anything you think, please let me know. Some really simple things - eg like avocados make Tália have instant energy. If you have any other tips, please let me know. It would be so good to be in touch. How are you doing? How do you manage living with Mito? I really want to increase awareness here. The States seems so far ahead. I am sure that there are many more mito cases that have gone undiagnosed.
Hi
It's Helga, we meet on Wednesdays with the kids! I find it amazing how much strength and positive energy you have, this is a difficult situation you are in, not having answers or a diagnosis for Tália. She is a lucky girl having come to you! I sincerely hope something good comes out of your trip to the US, in fact I'm sure it does. The air on planes is very dry, about 10% so lots of fluid for her on in the air:-) If you think there is anything at all I can help you with I'd be very happy to. H
For me I find a high fat, high protein, low simple carb diet is really helpful. Someone said this diet is normally helpful with complex 1. If she feels better with a fatty food like avocados then this might be something to check out. I work a lot at pacing myself and resting before I completely crash. I have cold intolerance, so I just carry a blanket around with me everywhere, but for others the heat is a bigger deal. If I see you mention a symptom that I have I'll leave a comment if I've found something helpful!
Hi,
After our conversation over coffee the other day I have looked at your blog and researched a little about Mitochondrial disease. I can't believe that every 30 minutes a child is born that will develop the disease by the age of 10. I really meant it when I said I would love to help. I really think that so much can be done to raise awareness and I would love to help in any way I can. You said you want to go to the press when you are back from your trip and I would love to get involved. You are really inspirational.
Please contact me at dawnplows@hotmail.com
Miracle Baby!!
Is it possible I could try some Yoga with her?
leenakinger@gmail.com
hi this is Rekha from India. Donot give up hope!!! If thiss child chose to enter the world and chose you as her Mom there is reason.... you are the only person who could have fought this battle.. Amazing that i went through this same situation when my daughter was born with Down Syndrome 30 years ago and we had no information or internet. NO ONE WANTED TO TALK about the subject and please read my childs challenges on our website www.downsyndrome.in
We are all with you and if at any time you are tired and need support please let us know, i shall come and help personally as i believe that we are all have the same connection and pain. love Rekha
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