Well, so much time has passed since I last wrote - the time of the awful swine flu and illnesses Tália faced through November and December. However the last month has been extremely positive and the New Year inspired me to start afresh and throw myself into focusing on Tália's therapies.
My New Year's resolutions are to get her walking, talking but more than anything else keep her healthy and pray that she continues to be the contented and happy girl that we all adore. But as you all know, my life is a roller coaster - I have some of the most amazing days and some frightening days.
Swine flu saw Tália fall back down to 6 kilos (with clothes on) and I have to admit I felt very discouraged. My heart plunged to see the endless hours of work, the hard earned weight just disappear in days. But, amazingly enough, she has miraculously bounced back. When she had swine flu, I really did not know which way my journey would go - where would we end up, how much could Tália's little, tiny body take. So I put off weighing her for a while and then I noticed that she was slightly chubbier - her trousers seemed tighter and my arms felt tired after carrying her for a while. And guess what???? She has passed the 7 kilo mark - yes in 1 month, she not only recuperated her weight but put on the most ever in a month since she was born. I am ecsatic, it is a miracle. It is like the sign I was waiting for to help me with my decision whether to tube feed or not.
I am trying though to take all this in my stride, staying excited but maintaining calm as my life is filled with so many ups and downs that I need to try and stay positive but realistic.
Despite the change in weight though, the last month has seen Tália reach many milestones.
- Tália has learnt how to eat and feed herself using her hands - previously she couldn't pick things up and refused to touch food. I thought I may feed her purees forever but now I get such pleasure out of seeing her digging into her Spanish Omelette and chomping at her chocolate whilst being able to wolf down a Happy Meal.
- Tália's speech - whilst still delayed and no very clear words, she is trying to communicate. Tália is making more sounds and seems to be more switched on.
- Muscle tone - Tália's tone has improved. November and December were terible, she could barely sit but now we have her standing again and I am determined to get her walking. She has been using a machine like a power plate, called vibrosphere, recommended by my incredible physio,Ana Duarte. My in-laws and mum bought the machine for her and she has been on it nearly every single day and the vibrations seemed to have made a real difference to her muscle tone.
-Sleeping in a bedroom with her sister - we no longer have Tália sleeping with us, we finaly had the guts to move her and she sleeps beautifully with her sister. So we have gained some space in our room plus she is closer to being more independent. It is easy to shelter a special needs child, easy to baby one - especially one so miniature - but we want her to feel older and independent.
Showing posts with label Swine Flu. Show all posts
Showing posts with label Swine Flu. Show all posts
Wednesday, 27 January 2010
Wednesday, 2 December 2009
Good Days, Bad Days
Well it has been a real roller coaster ride. On Sunday, Talia looked positively awful, she was so chesty and refusing to eat again. I went to bed with a heavy heart fearing another trip to hospital. But then, all of a sudden she woke up looking like a new person. She had more energy and actually ate three good meals. She is on a number of natural and homeopathic remedies and they seem to be helping her lots. I really do see allopathic and natural medicine as complimentary - I have needed both for Talia and it concerns me that people often see them as two sides of the spectrum.
Anyway she had a fab day yesterday too, slowly with more energy - able to sit up again, able to chat a little but then just as I was starting to relax, we had an awful night last night. But what on earth caused her to cry all night long? It really puzzles me. I thought perhaps she had kicked the side of her cot and hurt herself.
Anyway I have just spoken to the physio because after examining her, my gut tells me that her hip has come out of its socket a bit. I have given her an anti-inflammatory and she has eaten so now I am just watching her. If it gets any worse I will take her to the physio to check it out and then perhaps to the Dr.
She has just managed to fall asleep so that is a good sign - she was in too much pain last night to rest. Lets hope that she wakes up feeling better.
My oh my - it is already December - I feel as though the last three weeks have been about survival and getting through them. It is pretty scary to see Talia sick - she is so small and skinny that seeing her lying down and so floppy does thrust me back into reality. I can see just how vulnerable she is. Yet in our own ways, aren't we all?
I am so looking forward to going back to our physio sessions and all the activities - we have so much fun together and we really do enjoy the moment. I have seen Talia improve so much over the last few months. We just need to get over this hurdle and continue with the race.
I have finally received the muscle biopsy report from Barcelona. I spent quite a lot of Monday translating it - dare I admit that I quite enjoyed the challenge of translating the medical jargon? Wow, I learnt so many new terms - it really got my brain ticking. Probably not a bad thing since I have spent most of my time watching and listening to Baby Signing Time!
It appears that nothing abnormal has been picked out yet. I have written to the Drs asking whether this means Tália is not a mito patient. It appears that there is no mito problem in the muscle tissue but what exactly does it mean in real terms. Her lactate seems to be at its lowest level ever. However the mito medication - Q10 and Carnicor do make a big difference to her. Oooh I really don't know - you think you have a dignosis and then you end up back at square one.
Anyway she had a fab day yesterday too, slowly with more energy - able to sit up again, able to chat a little but then just as I was starting to relax, we had an awful night last night. But what on earth caused her to cry all night long? It really puzzles me. I thought perhaps she had kicked the side of her cot and hurt herself.
Anyway I have just spoken to the physio because after examining her, my gut tells me that her hip has come out of its socket a bit. I have given her an anti-inflammatory and she has eaten so now I am just watching her. If it gets any worse I will take her to the physio to check it out and then perhaps to the Dr.
She has just managed to fall asleep so that is a good sign - she was in too much pain last night to rest. Lets hope that she wakes up feeling better.
My oh my - it is already December - I feel as though the last three weeks have been about survival and getting through them. It is pretty scary to see Talia sick - she is so small and skinny that seeing her lying down and so floppy does thrust me back into reality. I can see just how vulnerable she is. Yet in our own ways, aren't we all?
I am so looking forward to going back to our physio sessions and all the activities - we have so much fun together and we really do enjoy the moment. I have seen Talia improve so much over the last few months. We just need to get over this hurdle and continue with the race.
I have finally received the muscle biopsy report from Barcelona. I spent quite a lot of Monday translating it - dare I admit that I quite enjoyed the challenge of translating the medical jargon? Wow, I learnt so many new terms - it really got my brain ticking. Probably not a bad thing since I have spent most of my time watching and listening to Baby Signing Time!
It appears that nothing abnormal has been picked out yet. I have written to the Drs asking whether this means Tália is not a mito patient. It appears that there is no mito problem in the muscle tissue but what exactly does it mean in real terms. Her lactate seems to be at its lowest level ever. However the mito medication - Q10 and Carnicor do make a big difference to her. Oooh I really don't know - you think you have a dignosis and then you end up back at square one.
Thursday, 26 November 2009
Swine Flu confirmed
Well, we got the results back and believe it or not they came back POSITIVE FOR swine flu. We have now brought Talia home and she is doing ok. She is weak and very coldy - she has lost her voice but her colour is so much better since they put her on the drip and rehydrated her.
It is so good to be home. Talia did not sleep well in the hospital - she found the drip very disturbing and cried all night complaining by saying Ay! Ay! My poor baby was very unhappy. Thankfully though they prepared everything for us at the hospital with the carnicor she needs etc. We have decided against Tammiflu as Tali has now had the flu for a week and the fevers have calmed down significantly. Weighing up the possibe side effects of possible diarrhoea and vomiting, we decided against it. However the Drs have told us to return if she takes a turn for the worst.
Our physio, Ana hs been amazing, she spoke to the homeopathic Dr and and bought us loads of vitamins and suplies to boost Talia's immunity and help her cough.
It is so good to be home. Talia did not sleep well in the hospital - she found the drip very disturbing and cried all night complaining by saying Ay! Ay! My poor baby was very unhappy. Thankfully though they prepared everything for us at the hospital with the carnicor she needs etc. We have decided against Tammiflu as Tali has now had the flu for a week and the fevers have calmed down significantly. Weighing up the possibe side effects of possible diarrhoea and vomiting, we decided against it. However the Drs have told us to return if she takes a turn for the worst.
Our physio, Ana hs been amazing, she spoke to the homeopathic Dr and and bought us loads of vitamins and suplies to boost Talia's immunity and help her cough.
Could Talia have Swine Flu?
23rd November 2007
Well, here I am in the Hotel del Sol, looking out the window of my five star room.
Back to life, back to reality… I think I should write a visitors guide to hospitals. By the way I resemble an alien – poor Talia had the fright of her life when she awoke from her sleep - her mum had turned into the green boggy monster. For here siteth I dressed in green overalls and a mask, looking like an alien from out of space, lest I should catch the dreaded lergy from the baby who practically slept, breathed and peed over me yesterday – weird really, especially since she got the flu from me!!!!!
Anyway she has been tested for the dreaded GRIPE A or dare I mention S----- flu. We, our whole family were ill for the last week with high fevers, coughs, sore throats and achy bodies and I did my best to avoid Talia – I was terrified she would get ill. She spent one day with her granny, one day with Susan and the last few with me…. She seemed to be battling well until she stopped eating yesterday and started getting all chesty. That was when I knew that she needed to be hospitalised. She wouldn’t even take water.
Well she is now on a drip, poor baby. She had a hard time – it took them about 40 minutes to take her blood and put the drip on – I wasn’t allowed in with her and all that I could hear were her heart-wrenching cries. Why does my poor baby have to go through this – she is my angel.
Well, here I am in the Hotel del Sol, looking out the window of my five star room.
Back to life, back to reality… I think I should write a visitors guide to hospitals. By the way I resemble an alien – poor Talia had the fright of her life when she awoke from her sleep - her mum had turned into the green boggy monster. For here siteth I dressed in green overalls and a mask, looking like an alien from out of space, lest I should catch the dreaded lergy from the baby who practically slept, breathed and peed over me yesterday – weird really, especially since she got the flu from me!!!!!
Anyway she has been tested for the dreaded GRIPE A or dare I mention S----- flu. We, our whole family were ill for the last week with high fevers, coughs, sore throats and achy bodies and I did my best to avoid Talia – I was terrified she would get ill. She spent one day with her granny, one day with Susan and the last few with me…. She seemed to be battling well until she stopped eating yesterday and started getting all chesty. That was when I knew that she needed to be hospitalised. She wouldn’t even take water.
Well she is now on a drip, poor baby. She had a hard time – it took them about 40 minutes to take her blood and put the drip on – I wasn’t allowed in with her and all that I could hear were her heart-wrenching cries. Why does my poor baby have to go through this – she is my angel.
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