Good Luck, Bad Luck, Who Knows?
That’s how I think of this day. If I had written this blog earlier on, it would have been filled with anger and frustration, concern and a sense of sadness at the humanity shown by people, but why?????
Here is an extract that I wrote earlier on:
‘What happened to humanity? Why do people let systems get in the way of healing? Why are we all fighting each other rather than heading towards one common goal?
Today has been frustrating and it is on days like this that I feel lost. The world has so many labels and boxes – what happens if we don’t fit into any of them? Today I awoke to a very coldy Tália with her streaming nose and chesty cough and choking away. I knew at once that this bleary eyed girl needed a decongestant but what do you give a 4.9 kilo child with suspected mito illness? A local paediatrician would not know her history and most Drs can’t cope with it without advanced notice, Materno Infantil just seemed too far, so finally we settled for Costa del Sol. Unfortunately my usual Dr was not there – he has shown nothing but empathy and support for us. Anyway I called the ward and spoke to the secretary and explained the problem. When no doctor called us and as Tália looked worse, we decided to head straight for the hospital and dropped the other two girls with my Dad. We went straight to the ward rather than emergencies as:
- Tália has no diagnosis but suspected mito disease means that flu’s and colds should be treated differently from that in a the normal patient
- A Couple of Drs there, at Costa del Sol, were aware that Tália had a skin biopsy and were aware of what they were looking for
- We could not risk seeing any general Dr on duty as Tália probably cannot cope with certain medication
Well, luckily a Dr saw us nearly immediately although explained that next time we should go to emergencies – I asked if we should go down and he said not to bother. He saw Tália and decided to give her some ventolin in a nebulizer.
It was whilst I was struggling with a screaming, crying Tália, coughing and choking, and trying to get the mask on her whilst my husband held her head still, that another nurse came in. I assumed that she was going to help me get the mask on but instead she just ignored Tali and ignored our distressed state and began to say that we were breaking the system, that we should have gone to emergencies, that we were taking up their room and resources etc. Tali was even more upset and the mask nearly poked her in the eyes. My husband asked the nurse if we could speak later and I said that I would like to explain to her why we had decided to go straight to the ward but she said she didn’t want to hear, that she was leaving and that she wouldn’t wait until I had finished. Tears welled in my eyes, I felt out of place, I felt unwanted and I couldn’t believe how insensitive a nurse could be. Surely seeing a mum so worried with an obviously tiny baby should spark compassion? Couldn’t her talk have waited? Did she have to have a go at us when we were focusing on her child?
She left the room as my husband got rid of her by telling her we knew the procedure and we wouldn’t come up again. Once she left, we gave up, switched off the nebulizer and walked out. I was crying. The nurses outside were surprised that we finished so quickly – we said that we were made to fell uncomfortable and unwelcome and walked straight out without looking back. They were shocked’.
Later on in the day, I spoke to my mum and she said that perhaps Tália didn’t need the ventolin – having been asthmatic, she explained that every time she had a high dose, she would shed weight. Also it would make her shaky – Tália didn’t need an asthma remedy but something to decongest her.
I came home and decided to look up some herbal remedies and my brother and sister-in-law surprised me by buying my Echinacea and driving all the way to drop them off. I received an email from the Dr in Barcelona who gave me the name of a decongestant to use – Mucorex.
So now I look back at my day and it no longer seems so bad – perhaps that nurse angered me enough to leave and stop the treatment. Maybe she was sent to stop me from giving Tália ventolin. Also Tália seems better. Now with a clearer head I ask myself was that nurse a stroke of bad luck, or was it good luck that she had a go at me? So, good luck, bad luck – who knows? All that I know is that I may not medically fit into any box but when I’m lost I have friends and family pooling together and ultimately that’s the best.
Monday, 1 September 2008
Saturday, 30 August 2008
Helicopteros Sanitarios to the Rescue
Tália seems to have caught a chill and yesterday I was really very concerned about her. We went to my sister-in-law's for tea and whilst there I could hear Talia's chest rattling in my hands. I was pretty terrified - I know that by now after all the positive surroundings and literature I should be as calm as a cucumber but I still have a way to go. I was a little panicked as I really wasn't sure what to do. Weighing only 4.9kilos, I can't just take baby cough mixture out of the cupboard and give her a spoon, I need to be careful. Also would it be an exaggeration to take her to hospital - should she be getting extra oxygen? And what about the lactic acidosis and all that, I would need to explain to whoever was on duty and hope that they would know what to do. As you can see, my mind was not still. Anyway I decided when like that,you should do nothing but wait for some kind of sign ( a trick that I learned from of Monkeys and Dragons). So slowly I set off home on my own with Tália and left the other two girls with my sister-in-law.
The drive home was awful as Táli was crying and started to cough and choke. I felt useless, unable to do anything as I had to focus on the road. When I got home I decided to call Helicopteros Sanitarios as my mind cleared and I realized that driving to the hospital would probably traumatize Tália more. At least I could put Táli in bed and the Helicopteros could check her in her own surroundings - that way I would be able to ensure that she didn't have an infection or need oxygen.
Helicopteros saw Tália and said that she just had a pretty bad cold and lots of mucous in her throat but thankfully not in her chest. They told me to call them back if her breathing changed. Once they left, I sprinkled some holy water on her and listened to a tape on meditation. When my husband finally arrived back with the girls, Tália was kicking away and full of beans - thank God.
The drive home was awful as Táli was crying and started to cough and choke. I felt useless, unable to do anything as I had to focus on the road. When I got home I decided to call Helicopteros Sanitarios as my mind cleared and I realized that driving to the hospital would probably traumatize Tália more. At least I could put Táli in bed and the Helicopteros could check her in her own surroundings - that way I would be able to ensure that she didn't have an infection or need oxygen.
Helicopteros saw Tália and said that she just had a pretty bad cold and lots of mucous in her throat but thankfully not in her chest. They told me to call them back if her breathing changed. Once they left, I sprinkled some holy water on her and listened to a tape on meditation. When my husband finally arrived back with the girls, Tália was kicking away and full of beans - thank God.
Money is an Energy
It is so difficult to balance everything sometimes. At present the market conditions in Spain are tough and my husband is working all hours. Sometimes I feel like a single mum – he goes early, comes back late and I feel as though he has missed the girls. When he’s around he’s fantastic but unfortunately he is also exhausted. I know that many a woman out there can relate to me and that’s why I am writing this.
My husband is a fantastic man and by working he is providing the family with bread and butter – he is thinking of us yet why do I sometimes feel angry?
My grandfather was a great inspiration to me – he worked up to his last days. His tale is a tale from rags to riches – he went from poor to very wealthy through his hard work. But one thing that has always struck me was that he really respected his family – he was always there for my grandmother – she came first – she was his goddess Luxmi and he often referred to her as his goddess. He always made time for her.
I really feel that people do need to work hard but I also believe that some out time is just as important – after all spiritual love and attention are much more lasting than material possessions. I also strongly believe that if you focus your attentions on your work but then also spend time with your family, the positiveness will naturally attract financial gain – by going into panic mode and running around like a headless chicken trying to close 101 deals, you achieve nothing. I don’t know why but in my heart I really feel rich and I really think that my husband needs to slow down and open his eyes and that this will help him to see more clearly the scope that we have. I believe in my heart that we will have the financial resources we need –money is just an energy and whenever we need anything, it just seems to flow but how does one explain this concept to someone else?
My husband is a fantastic man and by working he is providing the family with bread and butter – he is thinking of us yet why do I sometimes feel angry?
My grandfather was a great inspiration to me – he worked up to his last days. His tale is a tale from rags to riches – he went from poor to very wealthy through his hard work. But one thing that has always struck me was that he really respected his family – he was always there for my grandmother – she came first – she was his goddess Luxmi and he often referred to her as his goddess. He always made time for her.
I really feel that people do need to work hard but I also believe that some out time is just as important – after all spiritual love and attention are much more lasting than material possessions. I also strongly believe that if you focus your attentions on your work but then also spend time with your family, the positiveness will naturally attract financial gain – by going into panic mode and running around like a headless chicken trying to close 101 deals, you achieve nothing. I don’t know why but in my heart I really feel rich and I really think that my husband needs to slow down and open his eyes and that this will help him to see more clearly the scope that we have. I believe in my heart that we will have the financial resources we need –money is just an energy and whenever we need anything, it just seems to flow but how does one explain this concept to someone else?
Tuesday, 26 August 2008
A whole new world
Yesterday was an amazing day. We went to see a well known author and healer in Malaga. The way the appointment worked out was just amazing; the universe works in mysterious ways. Amyn Dahya and his wife Karima were truly warm and welcoming and filled with love. I was so lucky and privileged to be able to meet them.
Amyn saw Tália and conducted a healing session with her. His first instinct on seeing her was that she was not a child with a grave illness but just lagging behind in her inner cell formation. He felt that we would be able to help her on this path by transferring energy to her via meditation and using holy water. We all (Mum, Dad, Amyn and Karima) meditated over Tália and some water for a few minutes. In this meditation, we visualised her healing ( Amyn explains this whole process of self-healing in his website.
Amyn asked us to use any affirmation we were comfortable with - anything we saw a s a source of life, albeit a religious figure or something more abstract such as nature or light. The important thing was that we had to use what we believed in, what we had faith in. In that room we all visualized different forms of this energy. The beauty of Amyn's method was that it was balanced, based on individual beliefs - you are not required to fit into ´somebody else's shoes', - healing is based on your innermost belief system and love. I mean even within our family, we all have different things that inspire us and different views of the source of life.
I felt very comfortable in this meditation as it is very much how my mother works too when counselling her patients (see her website). Also my belief system is that of ´Truth is one, paths are Many' ( a line taken from our late guru, Sri Swami Satchidananda) - and this same system was depicted in Amyn's work. In addition to this Amyn also gave us a special fruit and vegetable juice diet to aid Tália's cells to form and function - he has a copy of these juices on his website under his self-healing section. He also told me to keep a balance and to use both medical and healing together. I liked this balance. He also told me not afraid to use echinecea and to watch out for infection.
So now everyday I am giving Tália the holy (or magic as my girl's would put it) water. As for meditation - well I'm not brilliant at focusing so I focus on light and energy, repeat a mantra but also use my mum's deep relaxation CD, Flow with Deep Relaxation, to visualise the healing. She uses a white light to show healing and this imagery really works for me. We have been using this CD to relax Tália a lot - when her teeth hurt, when she had her lumber puncture and was in excruciating pain, when she is restless. The CD also helps my girls, my eldest in particular - it helps her to calm down before bed time - since she was a baby she's hated sleeping and has had night terrors, the CD helps her to sleep through the night. The whole process is also very healing for me as it helps to focus on healing and not destruction. One Dr here said to me, 'Your daughter is going to probably get worse and her illness will progress, so you need to deal with it and start changing your life'. The latter I saw as negative, particularly as we have no diagnosis yet. Regardless of what ´Táli has, one thing is for sure, our temperament, our energy and our moods definitely affect her so it is in her best interest to focus on the light.
Amyn and Karima felt like old friends - they did not charge us a penny - the do not charge for this type of work, they have a separate business to fund their living. We left their place with so much more than we entered, far richer than before - apart from an abundance of love, their generosity was over and above anything one could expect - they showered us with books and agreed to help support mum and work with her on projects.
These acts of kindness, humanity and love just show what humans are capable of. This kind of giving I have only seen from my mum and late grandfather, George Harilela, and here it was, that same spark from these incredible human beings.
These experiences show me how much people can make a difference and how they can change our lives. When watching nothing but bad news everyday, we lose these glistening beams of light. Amazing Really!
Amyn saw Tália and conducted a healing session with her. His first instinct on seeing her was that she was not a child with a grave illness but just lagging behind in her inner cell formation. He felt that we would be able to help her on this path by transferring energy to her via meditation and using holy water. We all (Mum, Dad, Amyn and Karima) meditated over Tália and some water for a few minutes. In this meditation, we visualised her healing ( Amyn explains this whole process of self-healing in his website.
Amyn asked us to use any affirmation we were comfortable with - anything we saw a s a source of life, albeit a religious figure or something more abstract such as nature or light. The important thing was that we had to use what we believed in, what we had faith in. In that room we all visualized different forms of this energy. The beauty of Amyn's method was that it was balanced, based on individual beliefs - you are not required to fit into ´somebody else's shoes', - healing is based on your innermost belief system and love. I mean even within our family, we all have different things that inspire us and different views of the source of life.
I felt very comfortable in this meditation as it is very much how my mother works too when counselling her patients (see her website). Also my belief system is that of ´Truth is one, paths are Many' ( a line taken from our late guru, Sri Swami Satchidananda) - and this same system was depicted in Amyn's work. In addition to this Amyn also gave us a special fruit and vegetable juice diet to aid Tália's cells to form and function - he has a copy of these juices on his website under his self-healing section. He also told me to keep a balance and to use both medical and healing together. I liked this balance. He also told me not afraid to use echinecea and to watch out for infection.
So now everyday I am giving Tália the holy (or magic as my girl's would put it) water. As for meditation - well I'm not brilliant at focusing so I focus on light and energy, repeat a mantra but also use my mum's deep relaxation CD, Flow with Deep Relaxation, to visualise the healing. She uses a white light to show healing and this imagery really works for me. We have been using this CD to relax Tália a lot - when her teeth hurt, when she had her lumber puncture and was in excruciating pain, when she is restless. The CD also helps my girls, my eldest in particular - it helps her to calm down before bed time - since she was a baby she's hated sleeping and has had night terrors, the CD helps her to sleep through the night. The whole process is also very healing for me as it helps to focus on healing and not destruction. One Dr here said to me, 'Your daughter is going to probably get worse and her illness will progress, so you need to deal with it and start changing your life'. The latter I saw as negative, particularly as we have no diagnosis yet. Regardless of what ´Táli has, one thing is for sure, our temperament, our energy and our moods definitely affect her so it is in her best interest to focus on the light.
Amyn and Karima felt like old friends - they did not charge us a penny - the do not charge for this type of work, they have a separate business to fund their living. We left their place with so much more than we entered, far richer than before - apart from an abundance of love, their generosity was over and above anything one could expect - they showered us with books and agreed to help support mum and work with her on projects.
These acts of kindness, humanity and love just show what humans are capable of. This kind of giving I have only seen from my mum and late grandfather, George Harilela, and here it was, that same spark from these incredible human beings.
These experiences show me how much people can make a difference and how they can change our lives. When watching nothing but bad news everyday, we lose these glistening beams of light. Amazing Really!
Saturday, 16 August 2008
A Real Summer Holiday
Well its been a wonderful week - much of my husband's family have been over and the days have been filled with family gatherings - too much food, visits to the beach and pool and lots of fun. Basically my girls are surrounded by their cousins and having a ball, Tália is constantly stimulated by her loving aunts and uncles and thriving and I am just having the Summer I visualized, filled with lots of happy snapshots, carefree kids running in and out of my home and just pure focus on each day. No time to worry, not too much time to research, just time to be and being is a relief! I am also reading a beautiful book filled with positiveness and hope and I recommend it to anyone who is going through or has a loved one with any terminal or debilitating disease - 'Of Monkeys and Dragons' is written byMichelle Longo O´Donnell and is positive, uplifting and based on real life case studies.
In life it is good to be positive but sometimes we do get down, at the moment I am trying to strengthen my soul by reading positive literature and just looking around at the beauty around me and for now, until September, a little escapism from the medical world. I am a family person and being around my parents and all my extended family, my sister and brother in-laws and close friends makes me feel uplifted and this has a knock-on affect on my family.
We even took Tália and the girls to the water park in Algeciras - Bahia Park is fantastic for kids (and adults!!). Even Tália swam in the pools in her little rubber ring and had a ball. It was a fantastic day for all!
In life it is good to be positive but sometimes we do get down, at the moment I am trying to strengthen my soul by reading positive literature and just looking around at the beauty around me and for now, until September, a little escapism from the medical world. I am a family person and being around my parents and all my extended family, my sister and brother in-laws and close friends makes me feel uplifted and this has a knock-on affect on my family.
We even took Tália and the girls to the water park in Algeciras - Bahia Park is fantastic for kids (and adults!!). Even Tália swam in the pools in her little rubber ring and had a ball. It was a fantastic day for all!
Tuesday, 5 August 2008
Insurance Mum
Well its that time of year when staff are off on holidays and my husband somehow managed to cunningly rope me in to helping out at the office whilst mum and Dad looked after the kids. So there I was this morning thrown in the deep end. It was manic - a juggling act between dealing with claims, giving out new quotations to problem solving and managing individual requests - between 9-5pm, I barely blinked except to jump out of the office to do a quick emergency 5 minute shop and grab a take-away sandwich before focusing on the task at hand - what a whirlwind!!! In the past, I would have been a wreck but today I really didn't feel stressed - I guess that everything with Tália has made me see things from a different perspective - so I did my best for each client.
I love the buzz of a business and the excitement of building one up but today made me realize that I have the best job in the world, being a mum to three beautiful kids. The change however was a good break (if you can call it that)! My husband and I ran the office together and the buzz in there reminded me of our first year setting up the business.
Anyway now I'd better sign off - as i am so tired........................................................tomorrow's a new day..................goodnight!!!!
I love the buzz of a business and the excitement of building one up but today made me realize that I have the best job in the world, being a mum to three beautiful kids. The change however was a good break (if you can call it that)! My husband and I ran the office together and the buzz in there reminded me of our first year setting up the business.
Anyway now I'd better sign off - as i am so tired........................................................tomorrow's a new day..................goodnight!!!!
Saturday, 2 August 2008
A Fantastic Evening on the Beach
Its good to be back with my family - Barcelona was amazing and I absolutely fell in love with the city but I really missed my kids. However I do think that the break did us world of good. Tuesday's appointment would have been too much with three kids - it would have been hard to ask the questions I asked and also Andrew and I needed time to assimilate all the information.
Today has been lovely. This evening we went to the beach for my nephew's birthday. The beautiful cove in Estepona was ideal. Usually Talia hates the beach and screams when she sees and touches the sand. Today though, she loved the beach and she had her first little swim in the sea which, dare I say, was a hit. The sea was freezing but she was so excited and exhilarated. I love the water and also find it so therapeutic - I dive under and it seems all my worries disappear. Andrew and the other two were even in the sea at 9pm - it was the latest that the girls have ever been swimming and they were so excited.
Talia really enjoyed the experience and was particularly fascinated by the birds flying over the beach.
Today has been lovely. This evening we went to the beach for my nephew's birthday. The beautiful cove in Estepona was ideal. Usually Talia hates the beach and screams when she sees and touches the sand. Today though, she loved the beach and she had her first little swim in the sea which, dare I say, was a hit. The sea was freezing but she was so excited and exhilarated. I love the water and also find it so therapeutic - I dive under and it seems all my worries disappear. Andrew and the other two were even in the sea at 9pm - it was the latest that the girls have ever been swimming and they were so excited.
Talia really enjoyed the experience and was particularly fascinated by the birds flying over the beach.
Wednesday, 30 July 2008
Visit to Teknon Medical Centre Barcelona
Well the appointment we were waiting for has come and gone. The venue was a plush medical centre in the North of Barcelona called Teknon. I know that a fair amount of kids that are waiting to be transfered by the state to Barcelona have been to this private clinic which has an excellent reputation. The doctor was obviously a metabolic and neurological expert - she has seen many cases and she deals with mitochondrial disorders everyday.
On seeing Talia, she was taken by the size and failure to thrive aspect of her. I think this was the most striking symptom that caught our attention. We went slowly through all our notes from start to finish - I made her a folder and we meticulously talked through our progress. She agreed that lactic acod levels, lactate and pyruvate were elevated and claimed that she had the numbers to potentially be diagnosed as having pyruvate dehydrogenase deficiency but that many symptoms were not present meaning that she may not have it at all. However as the figures stack up, we need to wait for the skin biopsy to arrive which is specifically looking into this disease before looking to other possibilities. We just have to pray as pyruvate dehydornase is a fairly nasty illness with relatively low life expectancies - the expectancy depends on the severity of the disease. However Talia looks so well and is progressing and does not have half the symptoms so we must stay positive. Obviously I feel a little numb as I just wanted the doctor to exclude any mitochondrial illness and tell me that we were over concerned parents but she didn't.....
I asked whether there was anything we could do prior to the results of the skin biopsy with regards to vitamins and diet as I know that some patients may gain from a ketogenic diet (low carbs, high fat) and also prescribed vitamin B and Carnitor. I liked the Dr very much as she was not extreme - she said to lean towards the diet but not to be too extreme and to monitor Talia's reactions and act accordingly. So here begins a new challenge.
If the muscle biopsy shows tah Talia does not have PD then we will come back to Barcelona and the Dr will perform a muscle biopsy - so for now we will have to wait and see what happens.
Looking at Talia she is thriving in the sense that she is progressing everyday - this gives me hope and she is so beautiful, I just love her so much. Yesterday was intense but after the appointment, Andrew and I went on a tour bus with Tali and had a lovely Mexican meal - I treated myself to a Magarita. We are going to enjoy the next couple of days and focus on Talia's wellness and happiness - after all even the most healthy of us do not know what tomorrow will bring-
On seeing Talia, she was taken by the size and failure to thrive aspect of her. I think this was the most striking symptom that caught our attention. We went slowly through all our notes from start to finish - I made her a folder and we meticulously talked through our progress. She agreed that lactic acod levels, lactate and pyruvate were elevated and claimed that she had the numbers to potentially be diagnosed as having pyruvate dehydrogenase deficiency but that many symptoms were not present meaning that she may not have it at all. However as the figures stack up, we need to wait for the skin biopsy to arrive which is specifically looking into this disease before looking to other possibilities. We just have to pray as pyruvate dehydornase is a fairly nasty illness with relatively low life expectancies - the expectancy depends on the severity of the disease. However Talia looks so well and is progressing and does not have half the symptoms so we must stay positive. Obviously I feel a little numb as I just wanted the doctor to exclude any mitochondrial illness and tell me that we were over concerned parents but she didn't.....
I asked whether there was anything we could do prior to the results of the skin biopsy with regards to vitamins and diet as I know that some patients may gain from a ketogenic diet (low carbs, high fat) and also prescribed vitamin B and Carnitor. I liked the Dr very much as she was not extreme - she said to lean towards the diet but not to be too extreme and to monitor Talia's reactions and act accordingly. So here begins a new challenge.
If the muscle biopsy shows tah Talia does not have PD then we will come back to Barcelona and the Dr will perform a muscle biopsy - so for now we will have to wait and see what happens.
Looking at Talia she is thriving in the sense that she is progressing everyday - this gives me hope and she is so beautiful, I just love her so much. Yesterday was intense but after the appointment, Andrew and I went on a tour bus with Tali and had a lovely Mexican meal - I treated myself to a Magarita. We are going to enjoy the next couple of days and focus on Talia's wellness and happiness - after all even the most healthy of us do not know what tomorrow will bring-
Tuesday, 29 July 2008
Barcelona
Well, believe it or not, here I am in Barcelona blogging from our hotel room which has free WIFI access - pretty good!! Its been a crazy week, organising papers etc for this trip which was a last minute decision. After an appointment in Materno Infantil, one of the doctors there asked me why I kept going round in circles and said that the place to be and the specialist to see was in Barcelona. Why, I ask myself, did the doctor not tell me this earlier? Funnily enough though the Dr she had in mind was the same one that I was thinking of seeing as she also appears on a support sight for mitochondrial diseases in Europe. Anyway no use thinking of the past. Now I'm here in this Cosmopolitan Capital enjoying a fantastic holiday with my husband and Talia. Holiday? I hear you all saying. Well we came on Sunday and our appointment is not till this afternoon so we've had a couple of days to unwind, explore and see the sights. We do not know what this afternoon will bring, whether it will just be an appointment or whether we will need to stay here longer and re-organise our lifes - we really don't know. So we decided to really make the most of our time here. Our other two kids are having a ball at home staying with friends and grandparents so they feel as though they're having a holiday too and they're in good hands.
Its my first time here and I must say that this Cosmopolitan City has really captured my heart - the contrast of city and coast, Gothic and new - it is just so exciting and invigorating. Andrew and I have walked till our legs have dropped off exploring the Marina, walking the Ramblas and visiting the Familia Sagrada (which is absolutely incredible).
And here we are today - what will it bring. I am not sure nor am I expecting too much. Whatever happens these few days have been a much needed break - a change from the routine and I really needed it. This morning we are going to have a relaxing time by the pool and give Talia a good swim - I am concerned that she has been sat in her pram so much whilst we walk and I would like to work on the physio, then give her a little siesta before heading off to the Dr's.
So for all of you who may be reading this out there - fingers crossed for us. I just hope that Tali doesn't get poked and prodded.
Its my first time here and I must say that this Cosmopolitan City has really captured my heart - the contrast of city and coast, Gothic and new - it is just so exciting and invigorating. Andrew and I have walked till our legs have dropped off exploring the Marina, walking the Ramblas and visiting the Familia Sagrada (which is absolutely incredible).
And here we are today - what will it bring. I am not sure nor am I expecting too much. Whatever happens these few days have been a much needed break - a change from the routine and I really needed it. This morning we are going to have a relaxing time by the pool and give Talia a good swim - I am concerned that she has been sat in her pram so much whilst we walk and I would like to work on the physio, then give her a little siesta before heading off to the Dr's.
So for all of you who may be reading this out there - fingers crossed for us. I just hope that Tali doesn't get poked and prodded.
Tuesday, 15 July 2008
Diet and Nutrition is Key
I have decided to make a concerted effort and focus on Tália's diet. I cannot just sit and wait for results. I have spoken to many people who have had life-threatening disorders and the reason why many of them are here today are because they are both positive and also concentrate on their diets. I am by no means an extremist - U do not believe in strict dieting as I do not want to make Tália over-sensitive to certain products but I think the simple 5 portions of fruit and veg is a good starting point. I have also started to give her a natural multivitamin - the doctors said that whilst we don't know what she's lacking, there is no point in giving her anything...but alas I'm a bit of a rebel. My gut has been telling me to give her vitamins - so much illness is caused by deficiencies and a natural vitamin made from plant extracts wont hurt her. A nutritionist we know has also got me some probiotic powder for baby's to give Talia so I am also giving her this. Apart from this, I have been giving her oat milk for about 3 weeks and she seems to be improving. Perhaps it's my imagination but the combination of these things seem to be doing her nothing but good. Unfortunately, I am not a dietitian so much of what I do is based on what I read and gut and advice from those around me. I have also looked up information on super foods, antioxidants and omega 3's - slowly but surely we'll get there.
A friend of mine suffering from cancer told me that through her chemo she kept a very healthy diet and this is what has got her through and given her the energy to keep going. She is energetic and runs her own business - quite amazing really.
A friend of mine suffering from cancer told me that through her chemo she kept a very healthy diet and this is what has got her through and given her the energy to keep going. She is energetic and runs her own business - quite amazing really.
Friday, 11 July 2008
Tália weighs 4.93 kilos
Dare I say with her clothes on! Anyway at least she is putting on weight and not losing it - I think on our last check, in the same chemist, she weighed 4.7kilos ( approx 6 weeks ago) but need to check my notes to be sure. I know, can you believe it, I cannot remember exactly how much she weighed last time. The Dr told me not to weigh her so often and to let go as each week would be so painful - the whole process of looking at the scales and seeing them go up by a couple of grams was just too much so I literally took his advice and it seems to be working.
Over the last couple of weeks, I have been giving Tália Oat Milk. A number of homeopathic doctors and natropaths have suggested that I cut down on any cow's milk and infant formulas and change to either rice or almond. A friend of my mum's suggested Oat Milk and to be honest, it seems to agree with Tália better. Fingers crossed.
Had Speech therapy in Aprona today and then Physio in San Pedro. Mum came with me to the physio - she usually comes with me on a Thursday and its lovely to have the extra hands and support - usually by Thursday, I start feeling tired and its great to spend the morning with mum. Then usually we bring the girls to her house and we spend the afternoon together. And the last few weeks, my brother and sister-in-law have come with my new darling Indy. Oh I do love being an aunt. Indy is gorgeous and growing fast ( thank God). Seeing a normal sized baby these days makes me feel so happy and relieved. I looked around the room yesterday and just said how from just two of us (my brother and myself), did we end up with such a troupe?? And so many girls! But to tell you the truth - I have a soft spot for girls!
So yesterday afternoon, we all went swimming (not Indy of course - at two weeks, she's a tad too young!!!). My girls were doing their usual water gymnastics with my brother and sister-in-law's sister - standing on shoulders and all that jazz and Talia was swimming in her ring soaking up her independence, really working her muscles - oh I do love the Summer. These moments, these snapshots are so special to me - I don't know what Tali has, how serious it is, whether she has a short time frame in this world or whether she is just going to grow out of what she has but regardless of that, these moments are precious. Anything can happen tomorrow to any of us. For today we are all happy and well and nowadays these moments make me stand back and just record - record the bliss of the present.
It is easy to get stuck in the future and sometimes research does that to us - what is going to happen? BUT none of us know what tomorrow will bring and for today all is well ...
Over the last couple of weeks, I have been giving Tália Oat Milk. A number of homeopathic doctors and natropaths have suggested that I cut down on any cow's milk and infant formulas and change to either rice or almond. A friend of my mum's suggested Oat Milk and to be honest, it seems to agree with Tália better. Fingers crossed.
Had Speech therapy in Aprona today and then Physio in San Pedro. Mum came with me to the physio - she usually comes with me on a Thursday and its lovely to have the extra hands and support - usually by Thursday, I start feeling tired and its great to spend the morning with mum. Then usually we bring the girls to her house and we spend the afternoon together. And the last few weeks, my brother and sister-in-law have come with my new darling Indy. Oh I do love being an aunt. Indy is gorgeous and growing fast ( thank God). Seeing a normal sized baby these days makes me feel so happy and relieved. I looked around the room yesterday and just said how from just two of us (my brother and myself), did we end up with such a troupe?? And so many girls! But to tell you the truth - I have a soft spot for girls!
So yesterday afternoon, we all went swimming (not Indy of course - at two weeks, she's a tad too young!!!). My girls were doing their usual water gymnastics with my brother and sister-in-law's sister - standing on shoulders and all that jazz and Talia was swimming in her ring soaking up her independence, really working her muscles - oh I do love the Summer. These moments, these snapshots are so special to me - I don't know what Tali has, how serious it is, whether she has a short time frame in this world or whether she is just going to grow out of what she has but regardless of that, these moments are precious. Anything can happen tomorrow to any of us. For today we are all happy and well and nowadays these moments make me stand back and just record - record the bliss of the present.
It is easy to get stuck in the future and sometimes research does that to us - what is going to happen? BUT none of us know what tomorrow will bring and for today all is well ...
Wednesday, 9 July 2008
Excellent Metabolic Site
Can't believe it's already thursday tomorrow - where has the week gone. Yesterday Idecided to be brave again and do some research on metabolic and mitochondrial problems. It is a very tough subject to understand but my brother - in -law sent me a fantastic site which is a mitochondrial disease foundation in Pittsburg - any parents concerned about metabolic illness should look at this site. So far it is one of the most comprehensive sites that I have seen.
The Americans seem to be way ahead on this subject - they are coming up with supplements etc that, whilst they do not cure these conditions, they can help to manage them and avoid them from progressing too rapidly. We may have to think about heading to the states if we hit a brick wall here.
Well anyway, today has been a good day - Talia had swimming and thoroughly enjoyed it - she is really in her element in the water. Also my sister in-law came to visit with her two youngest daughters and the kids had a ball.
Tomorrow is another long day so I guess I better sign off.
The Americans seem to be way ahead on this subject - they are coming up with supplements etc that, whilst they do not cure these conditions, they can help to manage them and avoid them from progressing too rapidly. We may have to think about heading to the states if we hit a brick wall here.
Well anyway, today has been a good day - Talia had swimming and thoroughly enjoyed it - she is really in her element in the water. Also my sister in-law came to visit with her two youngest daughters and the kids had a ball.
Tomorrow is another long day so I guess I better sign off.
Monday, 7 July 2008
Thank God its Monday!
Well, dare I say, 'Thank God its Monday'! Girls are back to Summer school in the mornings. I know it sounds bad but by Sunday evenings I sometimes begin to crave, 'my time'. I love being with the family but the weekend turns into a lot of cooking and by the end of Sunday, I sometimes feel that half of my day has been in the kitchen- cooking, cleaning, cooking, cleaning...... I know I shouldn't be so ungrateful - we have had some spectacular moments. Sunday evening we went swimming and Talia and her sisters had an amazing time together. Talia just loves the splashing and doesn't seem to mind being drenched by the water. Tali was justso independent in a tiny rubber ring -its not really made for kids but is part of a toy! However it is the only float to fit her perfectly So lovely to see her free - not just for me but her sisters and Dad too.
My husband is working so hard at the moment - his alarm went off at 4:45am as he went to queue at social security to help a colleague with paperwork and translation! He's a kind man. However its been quite a morning for me rushing to get the three up, dressed, creamed (sun cream) and breakfasted and out the door by 8:30 and then straight to Estepona after that for Tali's physio. Managed to grab a coffee with one of my best friends, Susan - and she has been such a pillar for me. She suggested collecting the girls from school and that I join her by the pool later around 4ish. That is really good for me as it means that Tali can have a sleep in her cot and feed properly before I have to put her back into the car and move her again!
Ooh I am excited about all going swimming again - a mum's wish is to see her child happy and independent. All three of them look so content when swimming together - it really is a miracle.
My husband is working so hard at the moment - his alarm went off at 4:45am as he went to queue at social security to help a colleague with paperwork and translation! He's a kind man. However its been quite a morning for me rushing to get the three up, dressed, creamed (sun cream) and breakfasted and out the door by 8:30 and then straight to Estepona after that for Tali's physio. Managed to grab a coffee with one of my best friends, Susan - and she has been such a pillar for me. She suggested collecting the girls from school and that I join her by the pool later around 4ish. That is really good for me as it means that Tali can have a sleep in her cot and feed properly before I have to put her back into the car and move her again!
Ooh I am excited about all going swimming again - a mum's wish is to see her child happy and independent. All three of them look so content when swimming together - it really is a miracle.
Saturday, 5 July 2008
Tália's First Night Away
On Wednesday night, my eldest daughter was invited to the fair by her best friend and then for a sleepover. We decided that we would take our five year old with us to the fair and spend some quality time with her. The original plan was to take Tali too but Mum and Dad suggested picking her up and keeping her overnight, which to be honest sounded like the best option - the late night at the fair and the loud noises and flashing lights would probably be too much for her. And so Tali spent herfirst full night away from me. I really missed her loads and kept popping my head over the side to see if she was in her cot. However despite this, I really did enjoy my time alone with my 5 year old who adores the fair. She dolled herself up in a sparkly pink dress and just held my hand, happy to have me to herself - she was the baby before and that time together now was much needed. My eldest was also in her element needing to be with someone her own age rather than just with her younger sisters.
Tali slept well with her granny and grandad - I really was very comfy as I knew that Mum and Dad could really look after Tali as their own - mum does fantastic physio with her and yoga postures to help her strengthen her muscles and Dad plays lots of games with her, stimulating her with logical games. Personally I think it was beneficial for Tali - sometimes special kids can be set in their ways and fearful to venture away - I think that flexibility and variety are essential to help integrate her into today's world.
On another note, people have asked me why I don't post pictures of my two older girls -to be honest its more for their privacy. I think they are probably best to have a little anonimity. My main reasons for having pictures of Tali is firstly because should anyone with a similar case be reading this, they may see similarities in her stature, and secondly because some of the emotions captured in the photos cannot be put into words.
Tali slept well with her granny and grandad - I really was very comfy as I knew that Mum and Dad could really look after Tali as their own - mum does fantastic physio with her and yoga postures to help her strengthen her muscles and Dad plays lots of games with her, stimulating her with logical games. Personally I think it was beneficial for Tali - sometimes special kids can be set in their ways and fearful to venture away - I think that flexibility and variety are essential to help integrate her into today's world.
On another note, people have asked me why I don't post pictures of my two older girls -to be honest its more for their privacy. I think they are probably best to have a little anonimity. My main reasons for having pictures of Tali is firstly because should anyone with a similar case be reading this, they may see similarities in her stature, and secondly because some of the emotions captured in the photos cannot be put into words.
Tuesday, 1 July 2008
Talia's First Birthday
What a weekend - Talia's first birthday on Saturday (28th June) and Spain winning the football (- it was all celebration at home.
I just can't believe that my precious baby is one. On Saturday we had a 'small' family tea party for Talia. She was in her element when we cut the cake and was smiling and giggling as we burst into 'Happy Birthday'. She generally dislikes loud noises so I expected her to cry but to my utter surprise she was the only one of my three girls to welcome our tuneful singing!
She had a lovely day. On Sunday morning I was so excited to play with her with her new toys, as were her sisters. She has the fanciest toys in the world what with electronic story books, musical instruments, light-up mirror lap-tops, exquisite bath toys - I mean its a baby's paradise. She has lots to keeps her stimulated.
I just can't believe that my precious baby is one. On Saturday we had a 'small' family tea party for Talia. She was in her element when we cut the cake and was smiling and giggling as we burst into 'Happy Birthday'. She generally dislikes loud noises so I expected her to cry but to my utter surprise she was the only one of my three girls to welcome our tuneful singing!
She had a lovely day. On Sunday morning I was so excited to play with her with her new toys, as were her sisters. She has the fanciest toys in the world what with electronic story books, musical instruments, light-up mirror lap-tops, exquisite bath toys - I mean its a baby's paradise. She has lots to keeps her stimulated.
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