Medical Mum

Talia takes a few steps in her walker

2011-04-11T10:53:00.005+01:00

Tália has taken her first steps to independence - it is so great to see her able to start to move around on her own. This feeling of independence is like magic to her confidence. Take a look at this video. She is no longer strapped in to her walker and able to move it on her own. Looking back at the girl who could barely move, this video has given me great inspiration. Tália is such a cheeky girl with so much personality - she is now able to express herself better and her smile and good nature is infectious. She brings us so much happiness. Thank you to all you readers for sending her positive messages and prayers - I have no doubt that they alongside Tália's hard work with all her fantastic therapists have helped her to get this far.

A Carer's Identity

2011-04-04T15:08:00.003+01:00

Who am I?

Whilst I love caring for my daughter and family, I recently feel as though I have been through a bit of an identity crisis. I share this with readers as I want this blog to truly reflect what we mum's, parents, carer's experience. I think that if we share our good and bad times, then others will not feel so alone.

And how can one feel alone if they are surrounded by so many? I told my husband the other day, 'I feel so alone' and his answer was but 'I am here with you, sitting in the same room'. He didn't quite see what I meant by alone.

Being a carer is rewarding, don't get me wrong but it can also sometimes alienate you. As my daughter's mum, I have a huge responsibility - it is my decision usually if we go for any medical treatment, my decision as to what she eats, sometimes this responsibility can be intense. Whilst there are often more than one person making a decision, ultimately, usually one guardian or parent makes that final choice. It has to be that way for as children have greater needs, the needs for finance are greater, the needs for bigger homes or adapted homes increases, the need for help increases, so basically you find that in a couple scenario, one parent tends to take on the carer role and the other the family provider role.

Because of this focus, as a carer, you can become lost in that world. You become your child's mum and carer. You adapt that role and sometimes instead of playing the role, you become it. In doing so carer's often feel lost - if they are carer, mother, helper - what are they? Sometimes people see you as that. They are suprised if you are out alone.

However whilst playing the role of a carer, one must not lose their identity. My focus has been so intense that I got a fright when I looked in the mirror the other day. I look different - bigger, duller, tired and haggard. It hit me then that this would not help my Tália. How could one be a good carer if they can't even care for themselves?

It dawned on me that I had kind of lost the real me. I know that many talk of the duality of a carer but I think it is important that carer's do regain their identity and try to get time out from time to time. Seek support from loved ones surrounding you - I reach out to my mum often. Be open and honest.

If you are friend to a carer - be it someone caring for a special needs child, cancer patient or elderly, sometimes a big hug and a simple, 'I understand how you feel' can help. Carer's also need to be cared for - they need to be acknowledged as individuals.

Physio is and should be fun

2011-02-18T15:23:00.002Z

Tália loves her physio sessions. Ana Duarte has been a fantastic therapist for Tália. She has always encouraged us to integrate the concepts into everyday life. Tália is lucky to have such a loving team. In the mornings, she goes to nursery with Alicia, who works with her and is a physio, training under Ana Duarte.

Alicia, lovingly integrates Talia´s physio into her everyday activities. Simple activities like lining up and going into the gym or sitting on a potty etc. The last three months i have seen a real difference in Tália as physio has been integrated. At home we are trying to integrate it into play. Look how much fun Tália had in the park in the video below. In actual fact, her Dad discovered a way to work on Talia´s balance by using the climbing frame. Tália usually can only stand on her own for seconds at a time, yet this exercise forced her to hold her own.

I would really like to thank Ana Duarte and Alicia Martin Garcia for there support and for believing in Tália. They have encouraged us as parents to work with Tália and they continue to do it all with so much love.

2011-02-18T14:46:00.004Z

I have just been thinking that this page needs up-dating. I have been so focused on ONYOM that I haven't given this page enough thought. I have missed blogging here as this is like a diary for me - a place where I record all of those special incidents and share my feelings.

Tália is doing well and crawled four steps forward for the first time ever yesterday. I am over-joyed. We all take moving for granted and just to see her able to move and grab toys makes be so happy.

I also wanted to share this video with you - mum has been doing yoga with Tália and she just loves it so much. Take a look.

Its been a while

2010-09-30T06:21:00.002+01:00

Well, its been a while since I last wrote. I have been working behind the scenes as we want to launch ONYOM before the weekend. You will also view this blog on the Onyom site.

Well, we have had a really good month. Tália started nursery and we are about to complete her second week there. She seems to have adapted amazingly and she seems to have really come on in leaps and bounds. Her tactile defensiveness has improved and she can now paint without screaming. Yesterday, she coloured a picture without being forced, all on her own. She can hold her toothbrush on her own and brush her teeth. These may seem like tiny things but they are huge steps for us. Each tiny step is a step closer to her being able to integrate into everyday life. She is very happy in it and so motivated - her speech therapist is just amazed by her progress just from being with other kids.

Just when everything seems to be going smoothly...

2010-07-17T07:53:00.002+01:00

Well, unfortunately Tália had a little accident last Sunday and fell off her potty. The potty is only about 4cm high so when she fell off, I thought nothing of it. I picked her up and calmed her down. However as the day progressed, I got more and more troubled. At first I thought her hip may have come out so I massaged it and did some exercises with her but then we noticed that she couldn't sit up and was wincing with pain. My husband checked her over and we concluded that something seemed wrong with her right shoulder. So we packed the whole family in the car and off we went to the Costa del Sol. We were very sorry to find out that Tália had broken her clavicle. They bandaged her up and we took a very sorry little girl back home.

The last few days, we have been house bound, nursing our little monkey into recovery. Sadly I had to cancel the extra horse therapy sessions I had organised for the Summer. However, Tália has been incredibly brave, laughing whenever distracted and quickly adapting to using her left arm. She has thankfully got back her appetite. Apart from a few problems with bandaging - (she woke up Monday morning purple from the tight bandage and looked really scarily swollen and then she had some sores under her arms) she has been a real star and I am hoping that we will be able to slowly venture out next week.

ONYOM - A NEW SITE FOR PARENTS

2010-06-17T19:10:00.001+01:00

My friends Justin and Susan and I are building a website for parents with special needs Kids. It all started when I felt that my blog wasn't enough to encompass my journey. Through this journey I have met specialists, learnt about useful tools, got lots of on-line support - eg through Mitoaction, UMDF and Walking with Giants. I wanted others to get these benefits too. If I have so much to share, then so do many many other people out there. So it just makes logical sense to put our thoughts together. Never before has sharing made more sense. I constantly learn from other parents. They have been key. Regardless of diagnosis, there were so many common problems that broke through these labels.I have learnt from parents with Downs Syndrome, through cancer patients, via autistic kids.

Justin and Susan run a leading website and having seen my journey were keen to help me realise this dream. And so ONYOM was born...

The site we are building is slowly becoming a reality. We are hoping to launch in September - please help us to build up the information. Come and see us on onyom.com.

Physio is fun - Tália on her bike

2010-05-14T10:18:00.003+01:00

As you know, I am a firm believer of making physio fun. Our therapist, Ana is incredible and always teaches me how to adapt everyday playthings into something that will both be fun for Tália and also give her the physio she needs. We had a tricycle from Imaginarium and she used to sit in it. For the most part, she was reactive. She would sit back, have a rest and let us take her for a ride. At first this was great, just having her hold herself up in the seat was a miracle. However, when Ana saw her, she showed us that by adding velcro to the pedals, or tying her feet on with a bit of ribbon, Tália would not only learn how to pedal but also get the full benefit of exercising whilst out for a walk. Also, she would become reactive andshe would be the one pedalling, holding on to the bars etc. As you can see in the clip below, I was just so excited to see her moving the pedals - also she touches the handle bars. Getting Tália to hold on to handle bars or handles is tough given her tactile defensiveness - she is over-sensitive to the feel of certain materials and things. However in this clip, she just looks like a typical toddler enjoying her cycle with her Dad!

My Baby can Wave

2010-05-14T10:02:00.003+01:00

Wow, we seem to be really meeting the milestones. Tália started to wave. Up to now the only signs she can do are:
- Blow a kiss
- Wash hands
- Round and round the garden
- clap
Now, she is waving - and at the right time - it is not flapping around for no reason but a clear,´bye, bye' and she always uses it in context.

This is a great moment for us and means that there is lots of hope. This could be the start of her signing. A preious moment.

Tália is nearly 3 - since the age of one, we have tried to get her to wave. It just goes to show that we shouldn't give up - two years later and she has reached the goal. At times you think you will never get there - I din't know if Tália would ever feed herself, and she does, I didn't think she could use a potty, and she does...so many key things. These small milestones give us so much hope.

Tests and more tests

2010-05-14T09:49:00.003+01:00

Well, finally we have sent off our samples to Zaragoza. Now we just need to sit back and wait to see if we get any concrete diagnosis. We sent blood, urine, mucous and eyebrow hair samples from Tália and myself. Between you an dme - the mucous sample was awful, they had to take a throat swab and it kept on making me gag. Just to think that Tali always goes through these tests.

The Costa del Sol were fantastic - they prepared it all for us. Obviously getting blood from Tália was difficult - we always have a hard time doing this, but the nurses were kind. I had to pin her down while they took the blood. The urine was somewhat easier than usual - now that Tália sits on a potty, collecting a sample is so much better than sticking those plastic bags on her.

Well, its over -I always dread bloodtests for her and now I cansit back and let it go!

Vibrational Therrapy

2010-04-28T06:32:00.002+01:00

Tália has been using the vibrosphere almost daily since December. This therapy seems to have really helped her muscle tone. It also helps us to maintain her tone if we are unable to go to our physio sessions of if she is tired. The vibrosphere allows her towork her muscles without having to put inas much physical effort. For a child like her with energy issues,it has made a great difference in our lives.

The first step to walking and independence

2010-04-13T21:30:00.002+01:00

Tália has just been given a walker and I am just so amazed but how she has taken to it. When I saw her taking these steps I felt very emotional - we are getting closer to the dream. She works so hard, day in and day out. It makes me so happy to see her getting closer to mobility and independence.

Speech Therapy with Mum

2010-04-06T15:19:00.000+01:00

Do something about it

2010-04-06T14:07:00.002+01:00

Well, yes I was feeling rather sorry for myself when I wrote my last post. I guess there was so much thinking to do that I felt emotionally overwhelmed. Also my daughter's (Natasha's)breahing has ben awful. We have found out that her adenoids are enlarged and she is presently on treatment - I am hoping that we can avoid operating. This problem has caused her to experience extreme tiredness, hearing difficulty and irritability. Anyway, now that we know what is going on, we are doing our best to help her.

Anyway I have snapped out of it and now I have decided to take the bull by the horns. I have decided to throw myself into understanding the science behind mito and try to understand how cells work. If the mutation that they have found in Talia proves to be pathological, then it will be the first of this type - can you believe it, truely unique...very bizarre really.

I am also going to attend a course in Madrid to understand a little more of the techniques and therapies used with special needs kids. Whilst in the middle of nowhere, I am close to many European Capitals and I am going to do my best to understand how the human body functions.

A tad insecure

2010-03-22T13:52:00.000Z

March 22nd: Diary Extract
How do I explain how I feel? I don't want to worry too much yet today has really been a difficult one for me. I spent so much time trying to feed Tália and she would just put her hand in her mouth and pull it out again. On days like this I do question my decision not to tube feed. Usually I feel so sure and securein my decisions but now and again fear creeps in. I also know that fear can heavily sway a decision and that it can give us a blinkered vision, so I prefer to stay away from it. But today is just one of those days - I feel insecure. Our middle daughter (7 years old) has been acting up for a while - I think that it is because she is constantly exhausted. She has been very run down with a cold but today her teacher sent a note home saying that she was finding it difficult to read and breathe at the same time. Obviously when my other two girl are unwell, I get scared especially as doctors have said they could be mito carriers. However I am sure that it is just a cold and I wouldn't think twice about it if it weren't for Talia.

I guess its been a tough month for us - firstly March just reminds me of Dad - his birthday month and I am missing him terribly, secondly I had a beautiful holiday with my bro and family in Singapore - saying goodbye was very difficult for me. Thirdly Tália actually had gastro in Singapore and seeing her so weak was so sad. Fourthly we were forced to face education needs and questions. What do we do about schooling? Would she be integrated? For the first time in ages I have felt unsettled.

They have found Something

2010-02-14T05:30:00.003Z

Well, on Friday afternoon I received a call from Barcelona where the Dr told me that they believd that they had found the cause of Tália's condition. They had found a mutation in the mitochondrial DNA and to be more specific in A5514G. As usual, rather than receiving this news in the comfort of my own home, it was whilst driving to school to collect the girls on my hands free.

Obviously I asked many questions- what does this mean in real terms? What does it mean in terms of Tália, in terms of quality of life? What is the prognosis? Is this a diagnosis? Does it have a name??? But alas, these questions still remain unanswered. The Drs need samples from myself and Tália to be able to confirm diagnosis. So,it appears from this finding that Tália does have mito, although we have been down this route before and dont be suprised if I contradict this later on. We have been so close before and it has all been unfounded.

So how do I feel? Well to be honest, I have really thrown myself into the day to day care for Tália. I have really been enjoying her. I have felt very settled. A friend asked me, how do you live without a diagnosis, have I learnt to accept that I may never have one?

For the first time since Tália was born, I have really felt liberated, really believed that maybe not knowing was best - isn't ignorance bliss? Is not,no news, good news. Also I have seen many close friends and my lovely cousin lose their kids this year. It has made me realize that the quality is ever so important - we do not know what the next day will bring for any of us. By having no guidance, no diagnosis, I have also had infinite hope - nobody to place Tália in a box. No mental conditioning. I have come to realize that this has its advantages.

So, as you know with life, once you get comfortable with something and accept it, bang, answers will come. So how did I feel - well to be honest a little unsettled. Also my fear was that if they have found a mutation and this mutation came from my mitochondria, then there is 100% chance that my girls will be carriers of this mutation. This thought scares me.

Anyway, whilst I had this original discomfort, I have stopped myself there. Hasn't life shown me that there is no need to worry about something that hasn't yet been confirmed?? Couldn't Tali be the first one in the chain with the mutation??? If this disease is so rare, then the sky is still the limit. Nothing has really changed, Tália is thriving and I should focus on that and not lose my enthusiasm or direction.

So, I am back on track, I will need to plan a visit to Barcelona soon and I will need to follow up - but I am not going to cry over spilt milk that may never fall.

As you can see, I often need to work with myself on this journey. Just when I feel safe, there is a big suprise dip in the roller coaster. But I continue to believe that nothing is impossible, I continue to believe that the most important thing is that Tália is happy and content and not suffering. The love that we all feel is just incredible - the bond with her sisters, the bond with us is inexplicable and we need to make the most of this beautiful, although somtimes painful experience.

YES!!! Finally reached the big 7!!!

2010-01-27T12:17:00.002Z

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.

Good Days, Bad Days

2009-12-02T10:46:00.005Z

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.

Swine Flu confirmed

2009-11-26T20:31:00.003Z

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.

Could Talia have Swine Flu?

2009-11-26T20:29:00.000Z

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.

Feverish Baby

2009-11-02T08:29:00.003Z

Make the most of the Ups and they'll carry you through the Down's

My poor Tali has really had a difficult couple of nights - her temperature has soared up and fluctuated between 38 and 40. I stay by her side and just pray so hard for her fever to break. Last night we called helicopteros sanitarios just to make sure she was ok and didn't need to be hospitalized. They just said to keep giving her parecetomol and watching her - if her situation gets worse, then to take her to her paediatrician or hospital. It is hard to know what to do as we have no diagnosis. We just have to rely on our instincts and follow her lead. Even the medics don't seem to know what to suggest. But between Calpol, Belladona and homeopathic flu remedy, I am hoping to get her back to shape asap.

Thankfully she is eating - although only very little but at least she is staying hydrated. She is a very good girl and barely complains - she looks so tired and when she is so weak, she looks alarmingly skinny. Still, I know she will get out of this. Every child has colds and flus. Unfortunately Tali's muscle tone suffers but we will re-build it up again after this nasty bug has passed. She just needs rest, rest, rest ....so we are housebound!!!

Just keep your fingers crossed that she maintains her weight - we have worked so hard to get her up past the 6kg mark, I don't want to fall back again. If she does, tube feeding will definitely need to be considered. So we're back on the roller coaster!!!

High Fevers, no symptoms

2009-11-01T08:39:00.004Z

Well Tália has been doing well - lots of physio, lots of stimulation and just generally having fun. She went to her first Halloween Party dressed as a skeleton with her swimming group. Bless her, she really does make an authentic and cute skeleton - will try to get some pictures.

Despite doing well though, last Saturday she came down with a very high temperature - we are talking around 40 - I tried to keep it down with Calpol but actually finally managed to curb the temperature by giving Talia a homeopathic flu remedy which instantly worked wonders. By Sunday afternoon, she looked herslf again and she has had a good week, albeit the first few days her muscle tone was slightly down. Now this is the weird bit, last night (exactly 1 week after the last episode), her fever shot up again. She looked bleary eyed and her body seemed to radiate heat. What on earth is going on? When she has these bouts I am sure that we are going to rush her to hospital but she seems to fall in and out of them so quickly. So fingers crossed that this time round the fever will disappear quickly.

The homeopathic remedies have really helped me through these bouts. She had one spoon of calpol last night but I soon started using Belladona and the homeopathic flu remedy. It seems to work faster. I have been doing some research on these remedies and am really more and more fascinated by how they take affect. Seeing is believing. I never would have had such faith in these remedies if I hadn't seen direct results. Unfortunately I am one of those people who needs to understand why something works. The book I have on homeopathic remedies is incredible. I have never seen such a detailed guide - it does not just give you a cure for a fever or sore throat but defines the different types first. For example under fevers, under Belladona, this appeared:
(Extract taken from Homeopathic Medicine for Children and Infants by Daba Ullman)

BELLADONA
When children have a sudden onset of high fever with flushed faces and reddened lips, this remedy is the first to consider. These children also tend to have hot heads and cold extremities. The skin is usually so hot, it radiates heat, (you can feel it by placing your hand a couple of inches away from the skin). The fever is a dry heat, without perspiration. The child tends to have a strong and bounding pulse. At night, the temperature gets its highest, making the child agitated, sometimes delirious, perhaps leading her to hallucinate.

The description above precisely describes Tália's symptoms. Tália's inability to convert food into energy always makes me concerned to give her medications. I do not known how strong her liver is - I do not really know what her body can tolerate. Where possible I will try to focus on diet and natural remedies to help her through difficult times. Of course medicine is necessary and sometimes she needs to have it. I just don't believe in extremes. I believe that both allopathic medicine and natural medicine have their place in society and that they should be complimentary to each other.

A Positive Few weeks

2009-10-07T22:40:00.002+01:00

Well, we are back in the thick of it and I am loving it - horse-riding in Mijas, swimming with Naalie of Swim bebe Swim, regular sessions with Ana in San Pedro and Aprona for physio and speech. Tália is going through a good phase and I know that we need to make the most of it on this journey of peaks and troughs.

She has put on weight and is now at 6.4 Kilos. More to the point she is a lot more communicative and I am sure that she is trying to chat - I heard her say 'duck' today during baby swimming. The swimming for her is fantastic - so stimlating. Natalie's energy really brings out the best in Tali. She is also surrounded by other kids and Talia loves that interaction. Her muscle tone seems to be improving and she is getting cheekier by the day - dare I say the terrible twos are actually starting to shine through. Although for me the 'terrible twos' are 'terrific two's' as Talia is expressing herself. I am going to see if I can film Tali swimming next time - I would love to show you all just how happy she is in the water.

We saw our paediatrician from Hospiten today as I needed to take my eldest to see him. He was impressed by Talia's progress. It is so nice to see some of the key Drs who have helped us in this journey. So many people who care. Whilst we still have no diagnosis, I am starting to realy wander if we really need one. Let us focus on each day as it comes. Who knows what tomorrow will bring???

So much to tell...

2009-09-28T20:41:00.003+01:00

Well where oh where do I begin??? Its been a long time since I've written. After a fabulous July we found ourselves in Liverpool at the begiining of August for the Walking With Giants annual conference. This was absolutely amazing. You can see a slide show on the right handside of the screen. The conference was beautifully organised and focused on families and the importance of families.

I just thought it was incredible and the best thing for my other two daughters as they had a ball with the other siblings. It was important for them to see that they weren't alone - to see other kids like them with young siblings who had some form of short stature. It was emotional. What I loved most was the positiveness that surrounded us. So much hardship that people face, endless hospital visits, tube fed kids and yet these families were so loving, so happy to enjoy the moment and this really was incredible to watch. Everyone was there to make the best of a situation, not the worst.

Unfotunately the rest of August proved difficult for Talia - when we got back she seemed to start teething and she actually lost a bit of weight in August. Luckily, we had a lovely holiday in Portugal at the end of August and this took the pressure off me - my husband and I shared the feeding (which was difficult - since when do kids want to eat when their molars are coming out???). But alas, Talia does have the luxury of beng able to lose weight.

Despite the hiccup in August and a difficult beginning to September, a trip to the UK to check out Tali's hip semed to be just the medicine. I do not know whether it was the change in temperature or her granny and mum's constant attention, but she seemed to pick up again. (Admitedly granny constantly chatted with her and played her favourite game, 'round and round the garden' with her.Well fingers crossed but the last week has just been pretty amazing - Talia seems to be saying her first words - baby, up etc. i just can't believe it. She is also signing a bit. I see such a difference again. The DRs in the UK where so positive so we came back home full of hope - Talia does not need a hip operation at present. Thank God. I was really woried about surgery and setting her back.

Here is a picture of her on a swing today.

Up on her Own two Feet May 09

2009-08-16T21:54:00.002+01:00

To view this one, you may need to turn your computer around. My cousin sent me this clip of Talia in her physio sesion in May - look at the progress!! We'll have her walking soon!

Talia Eats her First Crisp (July 09)

2009-08-16T21:48:00.002+01:00

Talia grows and Passes 6kg Mark

2009-08-04T22:22:00.003+01:00

At the end of June, my husband and I visted a paediatrician who is also a homeopathic Dr. Seeing that as yet we have had no answers from traditional medicine we decided to try a different route. My physio Ana has seen miracles ocur with this Dr and as I trust and respect her tremendously I decided to vsit this hmeopathic DR in Malaga. She has treated a child with brittle bone disease and achieved much more than Drs ever expected. The child is now in main stream school and walks and talks and has hardly any fractures. By complete coincidence, I knew this child's mum from a business perspective long before realizing she also had a child with special needs.

Well after visiting this homeopath in Malaga and having given Talia loads of vitamins and minerals, I am astounded by the results - Talia has moved from 5.9kilos to 6.14 in just three weeks - absolute miracle. And, get this - she has grown 5 cm to 74cm. I was so shocked that I asked the Dr to measure her several times over so that I could comprehend it.

I am determined to avoid tube feeding and had set myself a goal of 6 kilos by October . Wow - fingers crossed that everything continues to improve at this pace.

Cleveland Clinic Results

2009-08-04T22:14:00.002+01:00

Well, results from the Cleveland Clinic have rolled in fast. The main findings have been a vitamin D deficiency which we can try and correct immediately and a deletion in chromozome 22(del 22q12.3, 281.8 Kb, overlaps LARGE). To be honest I dont really know exactly what that means but Andrew and I have just sent our blood over to be tested to see whether this deletion is significant or whether it is just the way our genes are (a polymorphism). The results will probably pose some important answers and enable us to know whether our other two girls may be carriers. So as yet no real diagnosis, just a few clues.....

To Tube Feed or Not to Tube Feed

2009-07-27T12:34:00.003+01:00

The biggest issue that I had to face in the US was the question of tube feeding. I was expecting the subject to be brought up but despite this expectation, it still hit me in the pit of the stomach when Dr Parikh and his colleagues recommended that Talia be nocturnally tube fed via a g-tube. To be honest the thought of feeding her this way makes me feel a little ill. But why am I so against it?? To be honest, for months when Talia was 4, 6, 8 months, I asked for it, I suggested it, I wanted it. But at the time, Talia was feeding badly due to her low tone and inability to suck an swallow. However, now, my darling baby loves her food, relishes it even. From crisps to avocado, mealtimes - yes they take long, but they are well worth it. So I have many reservations as it has taken me a long time to get her to learn to chew and swallow. My husband was really tough on her refusing to feed unless she opened her mouth and now she cando it beautifully. She eats an average of 1000 kcals a day and that of a two year old should be 1200 but remember she is the weight of a 2 month old!! Wont feeding at night make her lose her appetite in the day???? WHAT ABOUT HER MUSCLES? Feeding is a great way to exercise the mouth muscles - will she get lazy??? BUT worst of all for me is the thought of putting her under a general anaesthetic to carry out the procedure. Tália is extremely sensitive to it and I feel it is a very big risk.

On the other hand, I have to look at pros, look at cases. The nutritionist in the States said that the procedure was very simple. They agreed to support me from abroad - answer any questions etc. They really were so giving and warm and happy to let me ask as many questions as I wanted.

Could my closed minded approach be bad for Tali? I realize that I need to consider this option carefully and need to study it. In order to do so, I have contacted the gastro dr here in Malaga and after chatting about it we have decided to give Talia until October/November to make a deision. The procedure here is pretty much the same but the doctors think I should work a bit more with the diet side of things prior to making a decision. Also in August we are attending a Walkng with Giants Conference. Many children attending will be tube fed. It will be good to get some first hand advice and opinions from parents and kids.

Just now I am gong to do everything in my power to build up Tali's strength and weight. I know that when the time is right, I willl know what decision to take. As Talia loves swimming, I had already decided not to do anything over the Summer. Our lives are here to enjoy, to make the most of. I want her to enjoy the beach and pool. She is such a happy go lucky and happiness is key.

Meeting the Doctors

2009-07-11T07:21:00.004+01:00

Well its been a while since I wrote. So much seems to have happened. Each day seems so full to me - just not enough hours in the day. I realize that I started writing about our trip to Cleveland but just stopped. So much has happened since but I will try to summarize as best possible.

Meeting the Doctors:
Meeting Dr Parikh felt a bit like meeting a world famous actor. I had read so many of this man's articles on the web, seen so much about him on the UMDF (united mitocondrial disease foundation) site and more than anything used the mito handbook and emergency letter produced by the UMDF with Cleveland Clinic. I seriously felt as though the literature from them was a little light in the dark. I was convinced that had it not been for these documents, information on the web, I would be way behind. I also was sure that Talia's last hospital recovery had been thanks to this literature - so I enetered the appointment with so much expectation. Needless to say, he more than lived up to them.

My sister-in-law completely took charge of Tália, singing, playing, even feeding her at one point. She knew how important these appointments were to me. I arrived with a notebook bursting with questions, with a folder of notes bursting at the seams news and a dictaphone, looking more like a ews reporter than a mum, I guess. Probably a Drs greatest nightmare - opinionated mum, wanting to understand everything and unwilling to stop - but hey what can I do.

Dr Parikh sat with me for a good two and a half hours and his patience was astounding. He literally sat down and chatted me through his thinking process and put it all in layman's terms. This was what I needed. Someone to talk to, someone to question, someone who wouldn't laugh at my perhaps, basic questions. In fact, he empathised warmly and immediately I felt at ease. How my sister-in-law sat through it with Talia and did not even bat an eyelid or mention the time is beyond me. Now that I am home and re-living it, I just really am beginning to realize how much she did for me. I was so focused on the meeting that I just left it all to her. Talia felt so comfy with her. So happy.

Clearing a few Doubts

One of my key reasons for going to Cleveland was to find out whether the diagnosis was correct. Did Talia really have a multiple complex deficiency? Whilst I was led to believe she had primary mito, some things didn't stack up. Her complete doll like appearance and stature for one. I searched for images on the web. I searched for parents with kids with mito but couldn't pigeon-hole her. Then I discovered MOPD and Russel Silver and whilst many Drs say she does not have dwarfism, I am still unconvinced. Dr Parikh confirmed to me that whilst nothing was clearcut, that my line of thinking could be correct - the mito could actually be secondary ( eg a symptom to something else)and probably was. Naturally, in order to get to the bottom of this, more testing would need to be done to eliminate syndromes such as prader-willi etc.

Gastroenteritis

2009-06-21T09:48:00.002+01:00

Well, before carrying on with our America trip, I am blogging about an awful 48 hours. My family have all been attacked by a violent Gastro bug. Even Tali and Andrew. I so far have been ok but my stomach started growling today. I am determined to befine though. I need to be well.

Yesterday we almost had to rush Tali to hospital - she had not taken any solids in for 36 hours - thankfully though we managed to get some liquids into her. We decided to leave it until the morning. Thankfully she has had a little fruit and toast and sips of water. Lets pray that she keeps it down. The site of her wretching scares me so much. She looks so skinny.

This morning though she is moving and chatting more so fingers crossed.

Thank God for friends and family - my friend Susan whisked off our middle child yesterday as she was better so that I could tend to the rest of te family. Mum came round Friday but I had to keep her away yesterday as I didn't want her to catch the bug - too much risk as she is going to a village in Nepal with no medical resources. She left for the airport this morning but after spending so much time with us, I am worried about her on the plane.

Andthen there is Dad - how I do miss him: He was always here. Such a constant in my life. When there is any turbulence, his very clear logical, dependant personality, is something I miss so much. he was so mathematical, so practical. Sometimes it drove me mad but now I miss his consistency more than ever. If you ever wanted a weighed up situation, he was there.

Time has come to make another important decision - do I continue to send Tali to nursery? I really think that although she loves it, there is too much risk. I will try and organise my own activities and try to attend toddler groups and build up her strength and re-visit the nursery issue in September. In facct my sister-in-law gave me loads of ideas in the States and between these ideas, my stimulation room, swimming and getting mum to do yoga with her when possible, perhaps this could be a new exciting start. Lets really get her strong.

Cleveland Clinic

2009-06-19T12:10:00.003+01:00

On the 3rd June, Tália and I waved goodbye to the family and set off on our journey to the States. Apart from crying non-stop for the first two hours, Tália was really good and slept the rest of the journey.

Before we knew it we had landed in JFK. From here onwards I knew that everything would be easier as from here onwards my sister-law would be with me. That was just such a comfort. After the heart-breaking family news, I really was so grateful to have someone with me, someone I could trust and just be myself with. Really, having her with me made my life so much easier and Tália ever so happy, to be the centre of our attention.

My sister-in-law has worked with special needs so she was immediately right in there, stimulating Tália and working especially with her hands and hypersensibility, teaching her to hold food etc. It was ongoing, natural therapy and Talia was in her element.

The Clinic made quite an impression on us - I dont think either of us imagined the magnitude of it all. Our hotel was linked by Skywalks interconecting us to the clinic - we didn't even need to step out. Withtin the structures were cafes, restaurants - it was like a mini village. This was ideal for Tali as after tests, we could just rush back to te hotel room without having to put her in a car and commute for ages.

What does it all mean?

2009-06-19T11:31:00.002+01:00

Well, its been a long time since I last wrote. Lots has happened - it seems like an eternity to me. Unfortnately on the 31st May we had some very sad family news. My heart and prayers go out to my cousin and all the immediate family, as she lost her son to a form of meningitis. Zubin was a beautiful, radiant and fun-loving 3 year old boy. A special gift.

Life is so transient and losing a child so young must be so so difficult. It is hard to sometimes understand why we spend our lives working to build our homes and lives and then suddenly someone is taken away from us. Nothing is permanent - I keep on having to repeat this to myself. We all seem so fragile and cannot control anything.

I only wish that I could have been with my cousin at the funeral but as fate should have it, I needed to be in the US with Tali and Tali canot fly to HK as she cannot be in a polluted environment and the smog there is pretty dense.

Complex i, iii and iv and a new journey

2009-05-17T22:42:00.004+01:00

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

2009-05-05T18:11:00.003+01:00

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

2009-05-05T17:46:00.002+01:00

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.

Primordial Dwarfism

2009-04-20T10:52:00.003+01:00

Well, I have just seen a Channel 5 documentary, Extraordinary People, Britain's Tiniest Toddlers and my skin is up in goose bumps. This programme aired by Channel 5 is amazing and what's more amazing is that they remind me of Tália. Weirdly too, Kenadie, a dwarf who joins them at a Walking with Giants conference is wearing the same dress as Tália is in the Eye on Spain interview - I am shell shocked, is this a sign? Could Talia have a primary form of dwarfism with mito being a secondary feature?? She seems to fit in with them. Parents of Alex, diagnosed with MOPD 2 have set up an organisation - have a look at it - and please tell me, am I seeing things or does Tália look similar??? See the website - are there more of us with minature kids than we think??? How many people are out there like us but bringing these kids together will give them a social life, a chance to have a community.

Physio with Ana in San Pedro

2009-04-20T10:47:00.002+01:00

Have a look at this video - Tália has com eon leaps and bounds and Ana is just fantastic - see her enthusiasm. She makes it so much fun, Tália just cant help but enjoy it.

Hippotherapy - A Video of Tália in Action

2009-04-19T10:01:00.002+01:00

Well, although not a brilliant video (a bit shaky at times), it gives you an idea of Talia's first hippotherapy session. Notice how it is already good for her posture and her hypersensibility in her hands.

Hippotherapy - a new approach

2009-04-19T09:07:00.003+01:00

Well, as I mentioned Tália is now taking horse riding lessons - or if put in therapy jargon, she is having 'hippotherapy'. The journey there is a bit of a nightmare but once I get there I really appreciate it. The outdoor mountain air, alongside the beautiful horses surrounding us and the loving therapists putting Tali on the horse, it all just makes everything seem so right. Many people have asked me how hippotherapy works and what we aim to achieve. Watch the story of Melody below who took her first steps, thanks to this kind of therapy.

Physio can be a fun Way of Life

2009-04-12T18:54:00.003+01:00

One of the things that I have learnt is that physio needs to be built into your way of life and be fun. When it feels like work, Tália cries and doesnt get anywhere but when integrated to play or everyday routines, it just seems to work. For instance, Tália has hypersenitivity in her hands and dislikes holding onto and gripping things. However, take her to the park put her on a see-saw with her sister and she grips onto the metal bar. Put her on a swing and she holds onto the bar as you push her.

We have just had a lovely Easter Week. The weather has been glorious and we have had lots of time outdoors. Its been a long time since we've had a real day off just to have a nice lunch and long walk.

Tomorrow its back to routine again!!

Tália goes Horse Riding

2009-04-07T23:23:00.007+01:00

Wow!! What a day - I took Tara and Tália to the Mijas Riding School and huge race course this morning. Ana, our physio strongly recommended that Tália start riding to improve her posture and strengthen her trunk. After a few tears at the start, she seemed to just take to it like a duck to water. It felt great. The instructers were so professional and loving towards Tália. Afterwards she seemed so stimulated and chatty. Tara was fantastic and really helped to make her sister comfortable. We are now going to go there weekly - I know, yet another car journey for me but alas she looks so happy and it seems to suit her temperament! I already feel her posture is better - or maybe I'm imagining it!!!!

A few more answers

2009-03-28T05:41:00.004Z

Well, yes I know, I left off on Tuesday talking about d-day and then went quiet. Well the reason for this is that I had to absorb the information myself and it would help if I understood the information but when I heard the result, it was like someone chatting to me in Russian. I just could not get to grips with the science. The Dr was very patient reapeating it a few times but I feel a bit of a bimbo really. I was rushing to collect the kids from school and pulled into Carrefour and spoke to her on the hands free with Tali beside me - not ideal for concentration huh??? But if I didn't catch her then, I didn't know when I would as I had to take my girls to dance classes etc. and I reckoned hands free in the car with one topped three in the car!!!

Anyway I will reveal what I know though its not much as nothing official has been released and until the full report and all results are back (about 3 weeks) I wont be able to scour the report and knuckle down to some serious research!!

Basically, Tali has got Mitochondrial Disease, they has found something in the fibres and they are waiting for some respiratory DNA analysis for formal diagnosis but looks like she has some kind of complex. Exactly what the prognosis is - I still dont know.. I will have to wait till the suspicion is confirmed. The Dr however has seen the video of Tali and says that her progress has been exceptional and very positive so I thank you guys for all your prayers and support.

This week has been a tidal wave - waiting with apprehension for the results to finally getting something but not fully understanding. Should I feel relieved or nervous?? Anyway, it is what it is. Thankfully, Tali has had a better week this week and was better at nursery again - when she was ill last week she was so floppy and despondant that I was terrified.

My physio in San Pedro was so happy with Tali's sturdiness on her feet and Tali lifted herself from a sitting to standing position. So I guess that a diagnosis will give me the opportunity to stop searching and just focus on Tali's develpment. My physio wants her to start horse-riding , I am quite scared of horses but i must admit, it sound quite exciting and a bit adventurous and Tali would love to be outdoors like that.

I will keep you all posted when I get the final result. I just pray for a calm week next week. Apart from Tali's results we have been busy at work. We have a business stand for Hamilton Insurance at the Palacio de Congresos, Estepona and it is quite exciting and we launched our new website www.hamilton-homes.com on Thursday.This was a big deal as it is a project that my Dad was meticulously working on - I just wanted to complete the project - I feel that we have forfilled someting.

The work aspect has been fun and helped me through the initial part of the week when I was waiting for the results but I admit I am pretty tired and could do with a little less drama at the moment!!!!!

D-Day Tomorrow

2009-03-24T22:44:00.002Z

Well, I guess its time for bed. Here I am just looking at old photos of Talia - I just can't believe how much she has changed. Last few weeks have been tough as she has not been too well and everytime she gets a cold, she becomes floppy and weak. Having said that, she was better today.

I called Barcelona to find out about the muscle biopsy results and they said to call tomorrow to discuss them ... so I'm still in the dark but maybe this time tomorrow I'll know something else....

I just want to say a big thank you to all of you who have written lovely message and for your helpful and informative comments. Maybe someone, somewhere will recognise Talia's symptoms.

Fingers crossed for tomorrow:

Tália Appears On Eye on Spain

2009-03-10T09:32:00.002Z

Yesterday Tália made her first appearance on TV. She appeared on Eye on Spain's web television channel, the Siesta Show. Click above to view the show. I am so proud of Tali as she was a real champ and did not cry at all through filming - in fact she seemed to like the camera. For those following Tali's development, you can see my new stimulation room and also the progress in Tália who only months ago could not sit properly and wouldn't make any noises.

Yesterday was also Dad's birthday and Tália's appearance on the show was not planned to be on this particular date - so perhaps he's sending me a sign from above.

My friends Susan and Justin, Eye on Spain have been amazing and have really supported me. By interviewing us I hope that maybe someone, somewhere may recognise the symptoms that Tália has.

Everyone has been so supportive and I just want to thank everybody out there - there are many silent saints who pray constantly for Tália - I firmly believe that all this positive energy and love is making a big difference.

Talia's first week at nursery

2009-03-05T13:45:00.002Z

Well I have to say its been quite a week. Tália started nursery on Monday. The first day was a mad rush trying to get three kids out the door, breakfasted and in their uniforms. Then there was the car journey - to be honest the thought of leaving her did not make me sad. How could it? My daughter has been given an opportunity to integrate with other babies, will have friends, will have independence - she wont be labelled, she'll just be Tália.

Actually the truth is that I did shed a tear but for completely different reasons - firstly I really would have loved Dad to have seen her in her uniform - I know it would made him so happy. I had spoken to him about Talia starting nursery befor he passed away and he was excited. He has also always helped with school runs that I could just picture him and mum as proud grandparents picking her up. But als I know in my heart that he is watching from above but Idid miss his physical presence and I guess each milestone will be like that fo r some time.

Anyway Talia just seems another child - extremely happy and so settled in her nursery. The teachers are incredible -young and loving and so excited to have Tali, so keen to help her, so full of zest. And they are not scared - they are happy to let her try everything, they do not treat her like a China Doll. They treat her like a normal kid and it makes me so happy to see because she responds so well to that.

Talia did her first picture yesterday and it was a stamp of her footprint - her first picture ever!!! I was so proud. My baby is a budding artist!

The staff at the nursery are so keen to learn, so excited to be part of helping Talia and Talia's physio, Ana is going to go and chat to them and show them how to manage Talia. What a kind team - we are truely lucky to have these people around us.

Talia at Physiotherapy

2009-02-22T21:14:00.001Z

Talia trying to talk

2009-02-22T19:40:00.003Z

We have just had a lovely day out in Casares. But more than anything, it looks as though Talia is trying to talk. Uptil now, she has mainly made squeaky sounds - I have noticed her being more vocal over the last few days but today it seemed really amazing she said Dada and seemed to be trying to string sounds together. I don't want to get too excited but its a miracle. We started her on Co-enzyme Q10 at the beginning of the week and the change in her seems miraculous. I am so excited. She is so much more responsive. After the muscle biopsy she seemed so vulnerable and weak and it is just good to see her reacting and getting back to normal again.

We have moved offices over the last two weeks and I have my own office which I have converted into a stimulation room. I just love my room - it is covered with splashes of colour and nemo stickers and loads of colourful toys. I have a picture of my Dad to give me guidance and chat to Tali.

I am already seeing results from our special room - Talia does not see it as a work room but as a play room - as a room to be with her sisters, a room to have her independence - she can sit in her chair, perch on her toys and it does not matter if she falls due to the soft flooring. I see her as a different child in this room as she comes into her own. I have based the room on one that her physio in San Pedro, Ana Duarte has - Ana is a fabulous physio and she has really inspired me. Tali responds to her so well and even I am constantly suprised by just how much she can get her to do.

Its been a very difficult time for me personally - losing my Dad has been really hard and seeing my mum widowed so younger extremely difficult. However I really think that Dad is with me, looking out for us and checking that Tali is ok.

Muscle biopsy in Barcelona

2009-01-26T22:14:00.002Z

Well its been a long time since I wrote - over a month. Unfortunately my beloved Dad slipped away from this world on the 23rd December. It has been therefore a difficult month - whilst he passed away peacefully and beautifully with the immediate family around him, there is an aching feeling of loss of a loved one -like part of your body has been torn off. We all miss him terribly but also understand that he is at peace - his body was riddled with cancer and as he slipped away, the expression of suffering turned to one of freedom.

Well I miss him terribly as I was his little princess but that is another story for another time and really this blog is to focus on Talia. Now, especially after my Dad's passing, I am determined to do what I can to help her. I want to get her up and walking and I have many goals.

On the 19th January, Andrew and I were in Barcelona, hospital San Juan de Dios to do a muscle biopsy. The muscle biopsy is the final test necessary to find out whether Talia has a mitochondrial disease. As yet we have no diagnosis.

I have to admit that listening to her cry through the biopsy was awful, yet I guess a good sign that she was conscious and has a fighting element in her. Still this time it seemed harder - I guess after everything that's happened with Dad, I feel more sensitive. Despite the latter, I firmly believe that he is our guardian angel and that he is protecting Talia. She was so close to him and many an afternoon she would lie beside him and have a her nap - right up till the day he died. She would curl up to him and fall fast asleep. It was beautiful to watch this bond.

Anyway the specialist in Barcelona seems convinced that Talia has got some mitochondrial problem but we remain unsure until the biopsy comes back. The doctors in Barcelona were amazing - so warm and professional and caring.

Today I have been to Costa del Sol to remove Talia's stiches (about 4 on her leg). They removed them but the wound still looks quite fresh. My best friend Susan came with me and we had to hold Talia down whilst two nurses worked to remove the stiches. My poor baby - I hate to watch her suffer.

Having said that - she has an amazing character and energy and within half an hour was laughing and smiling - she is just so adorable and a real gift.

Anyway more to follow tomorrow - time to get some sleep! I am so exhausted - some of this may not make sense!

Moving Forwards

2008-12-15T13:17:00.003Z

Well - its been some time since I've updated my blog. It has been quite a month with Dad being unwell - full of up's and down's, a real roller coaster ride. But that's another story and perhaps some day, I'll tell it but not now.

Tália has been on her gluten and dairy free diet for a month now and so far so good. As a mum its hard to tell whether its the diet working or if Tália is naturally just growing up but I have to say that a few changes have been noted. Firstly, she seems much happier in physio and speech - she no longer cries so much and seems to be genuinely excited and happy. Secondly, she seems to be sturdier on her feet - not walking but standing. Thirdly, she seems to be communicating better - a few more sounds and just an overall awareness and fourthly she seems taller. So all in all a positive step forwards.

We have made the decision to send her to nursery 3 times a week as of January. I have had this itch again that has made me feel as though things need to move forwards again - we cannot stay stuck in our ways. I feel that interaction with other babies and toddlers is what Tali needs and that will give her the inspiration to walk and talk.

I'll find it hard to leave heras I just adore being with her but I need to help her to adapt to society and expose her a bit to the real world. The toddler group has opened my eyes and I have seen how happy she is there. Also in her physio sessions in San Pedro, her cousin, Indy has been coming with us and now Tali loves it - she actually shows off a little to her baby cousin!!

We have also finally received an appointment for a muscle biopsy and are heading for Barcelona mid-Jan. So I hope to continue posting through the next weeks.....

Big Bang and a Rainbow of Hope

2008-11-12T06:31:00.001Z

Well, last Monday (3rd November) started off wonderfully at first –I was walking with a skip in my step as everywhere the universe seemed to be responding to me with signs. For the first time in months, I felt a sense of clarity in thought – I knew what my next step for Tália was to be. I started the morning with a coffee with my husband where I relayed my plans excitedly and we began to discuss our plan for Tali. I decided to start a gluten free, dairy free diet to try and see how she responded and commented to my husband how it would be great to meet a mum of a Celiac Child to discuss diets and get recipe ideas. And what happens, a random woman comes up to me and asks me to join her once my husband had left. After speaking further, she tells me that she lives above our office. After further chatting, I see she is studying human physiology and before I know it, she is telling me that her daughter is Celiac Disease!!! This to me was a large glaring sign that I am going in the right direction.

At about 12:54, I was driving and then the phone call came. My world turned upside down, the sky came crashing down and my heart felt like a dagger was cutting up. This is when I learned that my Dad had cancer of the stomach that had spread to the lung and possibly the liver. I was shocked. How did this come to be if we thought the had a chronic bronchitis??? Could cancer attack so quickly? I had a good cry and then spent a few hours with my husband just coming to terms with the news and my husband frantically searched google to look at what the future looked like to us. What were the facts? What type of life could my Dad expect to live? What kind of questions should we ask the oncologist? Whilst upset and shocked, information is key and knowing what to ask is sometimes so important. When a condition is alien to you, sometimes you don’t even know where to start. So no matter how difficult or painful, as with Tália I wanted to know the spectrum of options.

Together we went to pick up our girls from school – I felt like I was stuck in a cloud, I had jumped into the screen of the latest Hollywood blockbuster. Soon I would wake up back to my sunny world – chatting to Dad and Mum, Dad fussing over me and worrying about how I am going to do the shopping, how I am going to pick up the kids…. Yep he’s a worrier and to him, I’m his baby. He looks after me like gold and is the best Dad in the whole wide world. Anyway on driving to the hospital, my husband suddenly jolted me out of my fog,

‘Wow look at that, that’s amazing – it’s a full rainbow’, and sure enough, there like a huge archway going from one side of the road to the other side, like a protective arch of light around us, was the fullest and most perfect rainbow I have ever seen. It had been a day full of signs from God and here was my rainbow of hope. This sign gave me an inner strength – I knew we would be alright, I knew we would fight this, I knew that there was hope. No matter what lay ahead that rainbow was a very visual sign for me and subsequently over the last week, be it when trying to sleep or when watching my Dad preparing for surgery, that rainbow has been in my visualisation and that spectrum of lights has acted as a focal point for my prayer and meditation.

Autism can be Reversed

2008-11-03T05:54:00.001Z

I feel so deeply touched and overwhelmed by Jenny McCarthy’s book, Louder than Words. Reading about her challenge in diagnosing and then finding treatment for her son, Evan, brought tears and joy to me. Reading her thoughts and experiences just was like déjà vu to me, a total emotional roller coaster. And yet she has always had a ray of hope and strength to fight through to the end. The results have been fantastic and any parent with an autistic child or child with some kind of developmental delay should read this book.

She has had her fair share of negativity. Drs who believe that Autism is something you have and something you need to adjust to (sounds familiar doesn’t it? How many times have I been told to be patient and just change my life and deal with what comes my way, that there is nothing I can do).

Jenny reveals how dealing with the different symptoms of autism can actually lead to some or total recovery from autism. It seems ludicrous that we know nothing about half of these diets etc. It seems crazy that 1 in 150 kids have autism. It seems maddening that in this day and age, we are still battling the medical world.

Reading this book has opened my eyes – Tália does not yet have a diagnosis but she does have symptoms; failure to thrive, hypotonia, general developmental delay and after reading this book, some autistic features. The joyous flapping of arms is a typical autistic feature, the loss of language – at 8 months. Tália was saying Dada, then suddenly one day she just stopped and we are still trying to get this back, her love for spinning fans and tops etc.

So, if Tália has a slight autism and also cannot absorb some nutrients (as with autistic kids), surely it would pay to start therapy to deal with these traits? Sure the physio and speech therapy are halfway there but we need to look at biomedical help too.

Yet Drs have not even mentioned autism, despite the fact that I have mentioned her hypersensibilty in her hands and fear to touch things. They have barely mentioned diet. No one has checked her food tolerances and intolerances. Nobody knows my child – the Drs see her for minutes – so they don’t see her flap. Nor do they see the positive –they don’t notice that now she can stand holding on to a surface – isn’t that a great achievement for a child who could barely move her arms and was completely floppy 9 months ago?

I know that autism is probably only part of the explanation but like Jenny who started looking at the symptoms –gut problems, yeast problems, immune problems etc. and fixed each one, I think, we, without any diagnosis need to follow in her footsteps.

And why does this feeling in my gut tell me that I am on the right path?? Well, firstly, I was amazed to see that Jenny dealt with issues at times in the same way I do. She trusted her gut and also asked God for signs – large whopping ones that fall down and hit you on the head.

Well guess what? First my mum bought Jenny McCarthy’s book in the states – she said it called out to her and beckoned to her – remember up till now we have not even looked at autism! Then last week I decided that Tália needed to have a muscle biopsy so I will probably need to go to Barcelona soon ( more signs led me to this decision). Whilst reading Jenny’s book last week, I questioned my speech therapist about autism, about metal build up in the body, about vaccinations and blah blah blah…… She said, ´Tália is not autistic¨ - I know that she doesn’t fit in the box but some things she does are the same. By coincidence (or not), the speech therapist introduced me to mum who happened to be waiting at the same time as me. And guess what, she had just been to Barcelona the previous day to see a DAN (Defeat Autism Now) Dr. She asked me if I knew what that was – if she had asked me one week earlier, I would have been lost but Jenny used DAN Drs and I was looking for a Dan Dr and low and behold where is this Dan Dr? In Barcelona! And where do I need to head to for muscle biopsy – Barcelona!!!

This fab mum gave me the Dr’s number and website. Whilst trawling through Jenny’s website , I also came across a directory of Dan Drs and Abracadabra, there, listed under Spain, was one DAN Dr based in Barcelona – there are no others listed under Spain – so guess what – we got a perfect match. The number that the mum gave me was the same as the one on Jenny’s site. Is this not a whopping sign??? I mean surely I would need to be a dunce not hear this signal???

Isn’t the next step on this road mapped out for me already? Now time to move on …time to look into autism and failure to thrive, time to go back to google and time to pack my bags for Barcelona! The adventure is about to begin……

It is nearly 7am so nearly time to get the kids ready for school. Time to close up –my golden hour for research has flown by.

Which cough treatment?

2008-10-31T09:58:00.004Z

Well, unfortunately Tália has been coughing all night. Oh no! The sudden cold weather has not helped. So now I'm thinking what do I do? Do I give her medication or do I go the natural route. I prefer natural but I don't want the medication going to her chest and at times prevention is better than cure. However after searching CaLCOUGH Tickly (the medicine I have at home for 3months+), online, I don't get much info and have found out that Calcough Chesty (different but same company) was taken off supermarket shelves so I am not going to risk it. I have looked up individual ingredients and it seems ok but it just makes me nervous. So I guess its echinecea, fresh fruit and ginger and some honey, lots of relaxing music and chants and a cosy warm home.

Well at least it means a day in for me - a day to be able to both work with Tália here but also to catch up on my research. I am doing lots of research at present. I have decided that we do need to do a muscle biopsy - everywhere I look and read, the signs are there. I think I'm going to be knocked over backwards with the signs soon so I guess I don't really have a choice.

I am fed up of no diagnosis and waiting - I need to be more proactive and now I am going to try all different kinds of things. I know her best and I need to trust my instincts. I am reading a fantastic book by Jenny McCarthy entitled 'Mother Warriors' and in one of the chapters one of the mum's ( Michelle Woods) says,

'You have to be able to have enough hope and to believe in yourself enough to combat that and go home at the end of the day and say, Ï know I am Right.¨ You have to be strong to look at them and say, Ï know my child better than anybody else and I will be able to heal this child¨. You have to be able to stand up to criticism. Anybody who's ever done anything great has had to do that. I think that a lot of us who have healed our kids know that you have to put up with a lot of crap to be able to do it'.

What a woman - and she has healed her child! It is true what she says - we need to be able to stand up to people - what you think is best does not necessarily coincide with what your pediatrician thinks is best. Each human being is different - we are all different shapes and sizes - how can one cure fit all? I am piecing together the jigsaw and I refuse to let anyone stop me. Time to move.

Daddy's Girl

2008-10-27T05:04:00.003Z

Well just when I think that its all onwards and upwards, there's a kink in the road. My father has looked under the weather for a while and I have been worried about him but I guess that since mum's been away he has kept up a brave face so that not to worry me. Mum arrived last Thursday and to be honest I felt a huge wave of relief to know that she would be there with Dad. I have spent some time with Dad but I am his little girl and I find that instead of looking after him, he just looks after me - he goes to the supermarket t buy special food, he comes with me to collect my girls, he refuses to let me pamper him.

However as we headed to Malaga airport to pick mum up, he looked greyer and generally unwell and at that point I knew that he had kept going and now felt able to let his guard down. Sure enough that evening, we rushed him to hospital.

Its been a tough week - seeing my Dad, for he is the perfect Dad to me in hospital. He is just right by my side with Tali, so actively involved with my life and I just want him to be well. The Dr's have performed tests and we have still to wait for the results so I can't say much at present. He is unable to leave hospital until his cough goes - he has an awful cough but we are hoping that that is just due to a chronic bronchitis.

Unfortunately he was rushed into hospital on the eve of my daughter's birthday which he didn't want as he wanted to go in after her birthday. Thankfully he did go in though because he did need medical help. This weekend of birthday plans has been the perfect distraction for my kids but extremely hard for me to try and stay with it, together and exuding joy and happiness. But we did and the girls had a great time - a big sleepover and a trip to McDonald's coupled with watching High School Musical in La Cañada.

Yesterday I felt a huge relief as I went to the hospital and my Dad looked much better - so much more colour in his face and chatting more. He still can't leave but that's cos his cough is still bad but hopefully he'll be out soon. Mum has been by his side at hospital - literally she stepped off the plane and into the hospital. The test results will be out soon but I remain positive - I spent 3 months waiting for Tali's test and despite Dr's thinking the worst, they have confirmed that she does not have Pyruvate Dehydrogenase Deficiency. So worrying about results prior to their release seems ludicrous.

Mum's and Toddler Group in Estepona

2008-10-17T22:46:00.002+01:00

Well, this has been a great week. After the long weekend, I decided to find a toddler group in the area and sure enough I found one. On Tuesday, after physio and speech, I made my way to Kidz Kingdom to check out the group there and guess what?? It was perfect. Talia loved being surrounded by lots of happy babies and was inspired. She clapped and moved to the sing song, sat on the trampoline as I bounced her, played in the pool of balls and enjoyed a lunch of cheese and toast with other toddlers. For once I felt that she could be the free child she is inside - she thrived in the environment, keen to try to stand and crawl. I felt quite emotional really to see her with her own age group. We moved a notch up on Tuesday, I felt it in my heart. Talia can make some friends. Yes, true when you look at others her age the height and weight comparison is astounding and her weakness is exaggerated but it gives ger a goal, it gives her something to strive for. I, too felt inspired. I have a bee in my bonnet - I can see her walking by Christmas. Whilst many think its over ambitious I don't care - I like short-term goals, they help me and Talia. So lets see what happens????????

Groundhog Day

2008-10-13T22:57:00.002+01:00

Well it has been a wonderful weekend as I explained previously but certain elements of it have reminded me of Groundhog day. The kitchen was a rather familiar settting and the day started with me emptying the dishwasher, At lunchtime I refilled it again and at supper time, emptied and refilled it again. I said to my husband, wow doesn't this feel like Groundhog day - just as I tidy and clean the kitchen, it all starts again and again - seems crazy really.

Relaxing evening on the net looking and getting ideas for my daughter's birthday present - amazon is my saviour with gift ideas. She loves Hannah Montana. so perhaps the DS game, then again she would love a pet but I REFUSE to have one. But perhaps a fake one???? That's when I found it, the GUPI, an interactive pet which follows you, responds to love and kindness, can walk around, even up an down steps (I think???) and needs to be fed from time to time - sounds so close to the real thing, I mean why would anyone want a real pet if they can have a GUPI. But despite all these things, can it make a cup of tea?? Can it read my girls a bedtime story???

Interestingly enough I also saw the iteddy - interesting toy - captured my attention as I have been reading Dragon's Den and this is one of the products that two of the dragons invested in.

Anyway still deciding what to go for - a GUPI or a metallic modelling kit from imaginarium with real motors?????

Really not sure.........

Any ideas??

Fun, Games and Monopoly

2008-10-13T18:44:00.002+01:00

Well that was a much needed long weekend. It is incredible how quickly the sea changes - after the stormy shots of the sea, all seems calm again and the high winds have gone just as quickly as they came. I have just had a good break - well as much as one can have with 3 kids!!! We had a cosy afternoon yesterday and played Monopoly late into the night. the girls loved the game and my husband, jammy as ever managed to bankrupt us all and own most of the board - although had there been a credit crunch in the game, he may not have survived!!!! Anyway it was great fun and pretty educational for the girls who learned about money, building properties and mortgage - not a bad start to life ehh?!!

Also had some time to do some thinking - I think its time to integrate Tália into society. Perhaps join a toddler group and get her to have some friends of her age - not just rush her in and out of physio all the time. Mixing with other kids may be tough as she can't run around but it may give her the enthusiasm and drive to try to walk. Her sisters are great but she now needs a social life of her own - birthday parties etc. We are always working on physio, speech, movement - now its time to do some normal things too!!!

The Sea Continues to rage

2008-10-11T12:12:00.004+01:00

Quite incredible really! Is this your vision of the Costa del Sol, Costa del Golf?

Costa del Sol on Orange Alert

2008-10-11T11:54:00.005+01:00

I woke up to this, this morning. Last night was incredible - the wind was howling like a hurricane and I barely slept a wink as I was on guard watching the sea urge closer to our home. Should we stay or should we go? When to evacuate? As I write the sea continues to dance crazily and the sky looks ominous although the wind has calmed down. Its quite a site and here I am cosy with a hot mug of coffee! Lets pray the bad weather is coming to an end on the sunny Costa del Sol which hasd been on orange alert!!!! Dare I venture out to go to the supermarket??? How badly has Manilva been hit. I hear Gibraltar has had some hair-raising problems too with this sudden bout of bad weather.

Charged with Energy

2008-10-07T15:18:00.003+01:00

Yesterday we went to see Amyn Dahya and his wonderful wife, Karima again. He said that although Tália had had a bad month in terms of her cold virus etc, that overall he saw an improvement in her. She has been looking better again, thank God. Amyn did a meditation and gave us some holy water. I left his place feeling positive.

Today Tália has had a good day so far. She had physio this morning and speech therapy. I tried not to get involved today - I sat in the room and watched but did not do much. Normally I interact a lot with Tália throughout physio; I sing songs, tell stories and feel a little like a juke box!! As of late though we have noticed that she plays up when I'm around, constantly moaning to me or looking for approval. By staying back a bit, she was better able to focus. So actually, it was very relaxing to take a back seat and watch the whole session from afar.

Back at home, Tália has been playing with her Xylophone and bouncing around with her aunty Susan and then at about 3ish she finally decided it was time for a snooze. I can hear her waking up now so I guess its time to sign off!

Play Time for Tália

2008-10-06T05:56:00.004+01:00

Yesterday I really noticed that the more we treat Tália like a Toddler the better. It is easy to baby her - after all she weighs the same as a newborn and measures the same as a 6th month old baby. However she is 15 months old.

So the time has come - this week I am going to potty train her - using a doll's potty - she falls through a normal one. Also I have noticed that when left playing independently, she touches more things and makes more of an effort to move.

Last night we had her sitting in her donnut for a while playing. She really had to fight to keep herself up but she did it and she played. This kind of play is so good for her. Sometimes its hard though because she gets so exhausted just pulling herself forward to get a toy - something so easily achieved for a normal child. But we need to be tough and push her a little as she'll easily sit back and rest if not pushed.

Tivoli, here we come!

2008-10-06T05:37:00.003+01:00

Its been a fun filled weekend - we took our two eldest girls to Tivoli World (Arroyo de la Miel, Benalmadena) with a couple of close friends, to celebrate our middle daughter's 6th Birthday, and they had a ball. I had a ball too. Many of the rides require an adult to accompany a child and some of the adults we were with really didn't like rides so I got more than my fair share - I love the exhilaration and buzz. I'm not as brave as I used to be and was pretty terrified going down the thunder mountain roller coaster but dare I admit it was thrilling! I loved screaming with my girls and singing up in the air - I felt like I could let my hair down. And by the end of the day, I had that comfy sleepy and worn out feeling.

A word of advice to anyone going to Tivoli - it is definitely worth buying the main entrance ticket (6 euros) and a Supertivolini (12 Euros) - the supertivolini lets you go on most rides an unlimited number of times - there are a few that you need to pay extra for. It is also worth getting a Supertivolini for any adult that is going to accompany a child on the rides as paying as you go works out much more expensive - believe me we learnt the hard way and after a few rides we decided toinvest in some supertivolinis.

After Tivoli, we stayed at mum's and Dad's so that our daughter could wake up on her actual birthday (Sunday 5th October) to see her grandparents too. So on Sunday morning we all had breakfast together, gathered around my parents living room and opened presents. Our daughter was shocked - between us we bought her a Nintendo DS - I had told her she wouldn't get one until she was 7 so it was a real surprise and she immediately fell in love with it.

After a cosy Chinese meal, we set off back home and the girls got to play with the neighbours. All in all a wonderful celebration!

A Lovely Birthday

2008-10-03T10:01:00.002+01:00

Well yep that's right - it has been my birthday this week and despite the rocky road with Dr's etc, its been a nice week. Birthday celebrations started early - after all if you can't enjoy now, when can you?? On Friday, Susan and her family came round for supper. We had a lovely evening - Susan and I cooked a big pot of Chilli and to make it even more of a Mexican Night, I tried my hand at delicious Margaritas! Then mum and Dad invited us to a hotel near Gaucin for Saturday night to jointly celebrate my birthday and their anniversary. The night away was just what the doctor ordered - lately all trips have been formed around trips to see Dr's - it was so nice to get away for pure enjoyment and not have to take any medical records with us. The girls just loved it - the mountain air worked a treat for all of us and even Tali looked all the better for it.

The biggest birthday present was that when I awoke on Tuesday morning, not only did the sun appear after torrential rain but Tália was able to return back to physio after a long time. It was great to see the physio again - she is fantastic with Tália and really loves her. It was just fab to get back into some kind of routine and structure. Seeing Tália getting her strength back was so good.

And the day did not end there....my husband surprised me to a dinner out with him. I thought we were going to get a take away only to find my in-laws hiding downstairs ready to look after the kids so that we could have some 'time out'.

So good birthday week overall. Now time to prepare for Birthday No. 2 - it is my middle daughter's b-day on Sunday so its going to be another week of celebrations!!

Costa del Sol yet again

2008-09-29T20:16:00.003+01:00

Today I had an appointment in Costa del Sol hospital. My best friend, Susan came with me to give me moral support. It was pelting with rain and awful driving conditions so it was so good to have the company and support. Well we made it to Costa del Sol in good time and after a nice cosy coffee and warm breakfast at the cafe ( which I have to admit does delicious breakfast at a very reasonable price!), we wandered around the hospital's gift store - Susan even managed to do some Christmas shopping. There's loads of interesting stuff there - we may go back just to visit the shop sometime!

Well, then the adventure began - we made our way to the out-patients floor and guess what? My printed out page said that my appointment was in 'neurology'. Can you believe that when I asked the nurses where neurology was, they said that it didn't even exist. Finally we were pointed in another direction and after asking random people, we found the waiting room. Well, stumbled upon it because it had a hand-written sign covering a printed one on the door, saying 'pediatra' - whether neurology actually exist s there or not I don't know, and evidently nor do the staff - so why my appointment sheet said that on it, is beyond me. Susan was pretty shocked. It seemed bizarre.

Well finally we were called in to see the doctor. But guess what? I was expecting my usual doctor, I was expecting a little consistency, I was expecting an update on the results from the skin biopsy - what a mistakea to makea.

The Dr had never seen Tália before and said that he would chase up the biopsy - yeah we know that - I discussed that last week with another pediatrician there. Did I really need to drive through torrential rain, drag my friend out and miss Tali's physio for this - re-arrange my life and drag my husband out of the office to pick the other two kids from school??? To see someone who knew nothing of Tali's case - she wasn't weighed, she wasn't measured. He only checked her chest because I said that he may as well, now that I was there - otherwise nothing would have been done.

So where is my continuity?? Tali has lost weight over the last month and so what? Doesn't anyone care - does anyone realise? Do they even know her name? They certainly don't know her age - the Dr asked me how old she was. When I suggested that he look at my notes, he made out that he already knew everything.

So what do I do? Where do I turn? How can someone see an improvement if they haven't seen the child before? The medical world is sometimes frightfully ridiculous - what is science? Is medicine really scientific - is that really how we measure behaviour? Surely science should at least look at growth charts, weight, development milestones or is science merely waiting indefinitely for a result that may not even show anything. If Drs don't look at my child - how will they ever know how she is?

I feel utterly disappointed - what happened to vocation - what happened to warmth?

Well thank goodness my friend was with me and I decided not to be my usual fiery self and kick up a fuss - I just played a silly dodo and smiled and was pleasant and said I would really appreciate it if he could chase up the results. I was proud of myself for keeping calm - what's the point of spending extra energy - I need as much as I can get.

Well its back to holistic - medicine does seem so far behind. I have one fantastic Dr at Costa del Sol but quite frankly if it weren't for him, I would have no hope. I think I will go back to Hospiten for regular check -up's because my pediatrician there is so warm and you can tell he really loves his job. He really loves Tali and I know he will always do the best for her.

Anyway, despite all this, Tali looks great this evening - she is getting better and she is trying to chat - I really am communicating with her.

Well, Susan and I soon put the hospital behind us and went to La Cañada to feed Tali and I also managed to get my middle daughter her birthday present - it her birthday next Sunday (5th October).. And what is the present?? You'll have to wait till next wee as its a SURPRISE. Hee! Hee!

This is a very bumpy ride

2008-09-24T10:26:00.001+01:00

Well, Friday was a hair-raising day. Tália woke up and basically refused to eat her breakfast – now for those of you who know my little Tal, she may be slight but she does have quite an appetite and enjoys her food, ESPECIALLY breakfast. So if she refuses to eat at breakfast, something just aint right. Sure enough it wasn’t – at first I thought it was a tooth or that perhaps I had burned the roof of her mouth with some food ( to my horror!) but then she started coughing and her chest started making an awful rattling sound. In such a tiny baby, this can be quite alarming. Anyway since she had been chesty the last few weeks, I decided to stop feeding her, give her a break and then try again later So I packed my stuff and headed to Mum’s and Dad’s.

Once at my parents’ place, I sat Tália down and started to feed her – but she couldn't take anything –she refused solids and liquids and her chest seemed to be going from bad to worse. Her eyes were red and she just looked very uncomfortable. Mum, who is asthmatic told me that we should take Tália to the doctor just to check her chest. Her rattle and cough sounded like Bronchiolitis.

So by midday we were in the emergency room at Costa del Sol where they dealt with us quickly and efficiently. They gave Tali a chest x-ray and said she had mild bronchiolitis and also gave her a nebulizer. Then they admitted us to the hospital, not so much for the severity of the bronchiolitis but because Tália is too small to go without food (in fact to my dismay they weighed Táli and she had lost weight, she now weighs only 4.63 kilos) and they would need to feed her intravenously.

One look at the cold cot and our room and Tali crying and I knew we couldn't stay – I could see that hospitals made her agitated – although the staff and treatment she got this time was very good. The Dr on duty was a lovely lady and she agreed that if Tália agreed to take food, she should come home.

My brother, sister-in-law and baby arrived and together with mum and dad we tried to calm Tali and feed her. At first she cried but then I sat her up and told her loud and clear,

‘Look Tali – I hate hospitals too but if you don’t eat this, we have to stay here in this cold room – don’t you want to go home and be with your sisters and the whole family?´

Instantly she started to eat, we all sang and spoke to her gently and to my relief we were soon headed back to my parent’s house. My husband had collected the girls from school and we were all together. I felt a sense of security – these days Táli goes from up to down and having everyone around me just helps me feel safer.

This last weekend has been bittersweet – like a roller coaster. My brother and sister-in-law left for good on Monday. We all stayed at my parents´ home to be together for this final weekend – if I had had to stay in hospital, I would have been gutted. We had a fabulous weekend just hanging around together – so much laughter, dancing to ABBA, watching X factor and all pitching in. However Táli’s weakness on Friday left me very sensitive. Saying goodbye on Sunday was also quite a tough thing for me. My brother and sister-in-law have really been there for me. We spend so much time together and they would move mountains with me.

On Monday, my friend Susan came and worked with me from home – just having her company and friendship lifted my spirits. By Tuesday I felt my old self coming back and I went shopping with my parents – a bit of retail therapy and a cosy coffee out can really make one cheer up!!

Back to Physio

2008-09-16T12:15:00.000+01:00

Well, Tali started back at physio yesterday and it felt great to be back. It was good to catch up with the physiotherapist who looks after Tália – she is so loving and gentle. She was impressed by Tália’s improvement although I explained that she was even stronger a few weeks ago – unfortunately her nasty cold really took its toll out on her.
However slowly but surely she is regaining her strength.

Yesterday we even did physio dancing (once I get myself sorted out, I’ll try and video a clip). Well she absolutely loves dancing and music and loves to watch her sisters, mum and gran prancing around. Its such good fun and so uplifting to see her giggling away.

Mum’s been teaching her where her nose and mouth are and yesterday we asked her where our noses were and she pointed at them. Her awareness seems to be improving – slowly but surely.

The best stimulation has to be books – her favourite book is 'The Very Hungry Caterpillar' and there is a section which says ´pop´ and every time I read that line out she laughs her head off.

Mitochondrial Awareness

2008-09-12T10:42:00.003+01:00

I have been so touched by the Mitoaction website - they have provided me with so much support. There are no barriers to their giving - whether you live in the States or Spain, there is a group of people out there ready to help. For anyone with mitochondrial disease or suspected mitochondrial disease, I suggest that they become a member and view this video (see link above) or video at the bottom of the page.

Whether Tália does or does not have mitochondrial disease - my eyes have been opened by how many amazing people there are out there building a network for other families and patients. With Mitochondrial Awareness Week approaching, I hope to help spread the word to others out there for Mitochondrial Disease is often known as the invisible disease.

We see so much about war, disasters etc in the world yet we here so little about these amazing people who dedicate their lives to helping others. Whilst sad to see what people go through, the beauty is that people are really standing together. Mitoaction presents a positive way to live with disabilities. The positiveness is truly inspirational.

Which way do I go?

2008-09-12T09:54:00.004+01:00

I woke up this morning feeling confused. What do I do next? We are waiting for results back from Tália's biopsy but apart from that, I feel quite forgotten by the medical world. No one has properly checked Tália here since June and she has not put on weight - surely a 4kg 14 month old should be monitored monthly. So I guess I need some consistency but from where?? Do I use a local general GP or a private pediatrician or do I need to chase the Costa del Sol or should I go back to Materno. I am in limbo and need a plan. Apart from positive and holistic approaches I need some kind of medical support but how to balance so many Drs - well just have one I hear you say!! However the Drs are of different opinions and none have seen her consistently so I don't want to close any doors. I think I need to meditate as I feel like I have cotton wool in my head.

They say that when things are so unclear you should wait for a sign - so hey to you up there, I´m waiting - please send it to me and don´t make it to subtle as my vision is a bit blurred at the moment!

Mamma Mía

2008-09-07T17:57:00.002+01:00

Yesterday we decided to use the 20 euros the kids gave us towards a family day out - something that they would remember. So we headed out originally to go to the countryside and exploring but when we arrived at mum´s to get the older two girls who had spent the night there, Tália looked exhausted and off colour and ready for another sleep. So instead we left her with mum and took our two others out with us - instead of the country we decided to go to TGI's in Puerto Banus and then to see Mamma Mía.

We had a fantastic time- I am a real Abba fan and the movie really has a feel good factor about it. I felt like jumping up and dancing and wanted to laugh and cry with the characters. I suddenly realized how stressed I was as I felt my shoulders relax and enjoyed the escapism.

The girls adored the movie and we had a ball - I missed Tália but really felt I needed this time with my other two. Táli´s been unwell all week and I've been nursing her and praying and visualising whilst the other two have been with my in-law's and spending lots of time with my parents (which they love) - however I needed to share sometime with them especially as school starts on Tuesday.

I am going to see if there is a dance class or evening thing on that I can attend at night - I reckon that it would probably keep me feeling refreshed and stress free just to have some time to take down my hair!! With the responsibilty that I have, I guess I sometimes forget to be and have a laugh - don't get me wrong, nothing can be more fulfilling than being a mum to such special kids but perhaps I need to lighten up the air a bit?

Mum Saves the Day

2008-09-05T11:17:00.004+01:00

Mum is back from Barcelona - hurray!! Its been a hard week for me. Tália has had a common cold yet because of her size and her wheeze, she feels so vulnerable. The skinny outline of her body sometimes sends fear rippling through my body, the rattling chest sounds so loud and ominous. Yet I know deep within that I need to change my specs - I need to see instead of skinny, a girl who at least is eating, instead of fear, I need to trust and surrender to the life force and I am trying, although sometimes I guess we try so hard.... Sometimes, one just needs a positive boost and that came from my parents and family yesterday.

I felt so tired - I guess it was mental exhaustion - trying to channel energy to my girls, maintaining a positive stance - yep I do need to work at it. There are days when you wake up a little down or frightened, usually days when Tali looks floppy and exhausted. However these are the days when I use positive affirmations to try and replace negative thoughts. Sometimes when too tired to train the mind, I find that making sure you are surrounded by positive people, landscapes etc can be extremely uplifting.

Well good news is, my older kids went to play with their cousin at my mother-in-laws and had a ball and mum and Dad came to give me that emotional support. Then in the evening my brother, wife and beloved Indy came too. We had all my immediate family at home - it was my husband's and my anniversary and the energy they all gave me helped me at a difficult time. Warmth and love are so healing.

My daughters also uplifted me - they gave my husband and I a very special anniversary present. Taken from her well-kept savings (which she never spends), my eldest daughter put into a homemade card 20 euros for 'you and Daddy to go out together and enjoy'. My youngest daughter said ' You and Dad need to decide where you want to go, its for you to spend time together'. What made me even happier was that although the money was my eldest daughter's, she said it was from her piggy bank and said it was from the two of them.

We have decided to use the 20 euros towards a family lunch out so that the girls can pay and we can celebrate together, once Tália is better. So the negativity has gone and not surprisingly, Tali looks better - her granny has a healing touch.

My Little Dolphin

2008-09-02T10:28:00.001+01:00

A while back I said that I would put in some pictures of Tália awimming in her special sized minute rubber ring. Well here she is -my little Dolphin!

She absolutely adores the water. The independence it gives her is fantastic. She can float around alone without always having to be held.

Good Luck, Bad Luck, Who Knows?

2008-09-01T22:04:00.002+01:00

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.

Helicopteros Sanitarios to the Rescue

2008-08-30T21:19:00.004+01:00

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.

Money is an Energy

2008-08-30T09:44:00.001+01:00

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?

A whole new world

2008-08-26T21:21:00.008+01:00

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!

A Real Summer Holiday

2008-08-16T06:30:00.004+01:00

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!

Insurance Mum

2008-08-05T22:12:00.003+01:00

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!!!!

A Fantastic Evening on the Beach

2008-08-02T23:04:00.003+01:00

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.

Visit to Teknon Medical Centre Barcelona

2008-07-30T06:50:00.003+01:00

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-

Barcelona

2008-07-29T06:22:00.003+01:00

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.

Diet and Nutrition is Key

2008-07-15T22:05:00.004+01:00

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.

Tália weighs 4.93 kilos

2008-07-11T05:39:00.005+01:00

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 ...

Excellent Metabolic Site

2008-07-09T21:44:00.004+01:00

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.

Thank God its Monday!

2008-07-07T14:19:00.002+01:00

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.

Tália's First Night Away

2008-07-05T06:50:00.002+01:00

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.

Talia's First Birthday

2008-07-01T10:59:00.002+01:00

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.

Talia makes a quick recovery

2008-06-24T21:23:00.002+01:00

Talia's skin biopsy went fairly smoothly yesterday - she was a real star - barely cried and even though they thought she may need stiches managed to get away without any. Today the wound had stopped bleeding and by this afternoon she started looking more alert again. I must say that I am relieved that we wont be getting any results for 2.5 months as it means that I can just focus on an amazing Summer - taking the girls to the pool everyday, doing physio with Talia everyday and just being. A couple of months free of doctors is just what the doctor ordered (ironically).

I have been looking online at different plans (standing supports) and I am amazed at products out there for special needs kids ( see www.jenx.com for an idea). I think the cat model is the one they will select for Talia.

Luckily, the state have given me a prescription and have agreed to pay for it - I have been round so many appointments to get the presciption -first to see my local paediatrician in Sabinillas, and then to Estepona, and then another appointment in Estepona. Once I had agreement from the doctor, the paperwork - prescription, empadronamiento (Talia's), medical card and all had to be taken to the Costa del Sol and then had to be approved by the committee there. However after all these steps I got the prescription approved and now that I understand the state system, I am actually very pleased with it.

Indira brightens up our world

2008-06-24T21:17:00.002+01:00

I am so excited! I have a beautiful neice, Indira and she is gorgeous. She was born at 6:14pm and is just a perfect work of art. She is gorgeous - weighs just under 7lbs and is long (50cm). My brother and sister in law were fabulous - my sister in-law went through a perfect natural birth - no epidural. She justbreathed her way through the experience. After a long day (over 12hours at the hospital today), she llooks fabulous. I can't wait to see my little Indy again tomorrow.

Cosy Comfy and swimming with dolphins

2008-06-20T22:07:00.003+01:00

Kids are in bed and my husband is watching the football and here I am with my feet up preciously enjoying 'my time'. Perhaps I need a cuppa too, whilst I sit and type and browse through my emails? !

Talia spent much of the day with her granny today whilst I went to a couple of business meetings with my husband and then to buy some little end of term gifts for the kids' teachers. I must say Talia looks great for it. She had a slight cold this morning so I cancelled Speech therapy and Swimming. However when I picked her up she looked really well. Mum had done lots of physio with her - (my Mum and Dad have been a real support for me ). In addition to this, she has eaten extremely well and had two naps. The day in seems to have worked wonders.

I have just looked through my emails and received some lovely messages from people reading my blog - I just want to thank everyone for their supportive messages and useful links. They give me so much hope and support.

Thanks to these messages, I am thinking of trying out a few different things. I have had lots of positive feedback from people who have taken special children swimming with dolphins. Apparently the the healing effects are amazing. I would absolutely love to take Talia - actually I think it would be therapeutic to take the whole family. I have been given some ideas of where to do this so I will make enquiries and post any useful links for anyone wishing to do the same.

I have decided to have a fantastic Summer - I am looking forward to swimming with the kids everyday an dmaking the most of it. After the skin biopsy on Monday, I just don't want to focus too much on medical tests - I think our family just need a month or two of fun! I'll have a new neice soon too - I am so excited about that too.

Topsy Turvy

2008-06-18T21:18:00.004+01:00

Woke up this morning determined to call up some doctors and chase them up on bits and pieces - the UK Dr to chase him up on a test that I've been charged for but have never received any results for, Costa del Sol to find out what's going on with the muscle biopsy and Materno Infantil to give latest lactate and spinal fluid results to the neurologist we see there. So, after sending my two eldest girls to school and after feeding Talia a good breakfast. I placed her in her donut to play and started some phonecalls. This donut thing is new - before she couldn't hold herself up in there and I would have to lie her down on cuhions but today she sat pretty well and played with her toys. She is great on her own as it gives her the feeling of independence.

Anyway I spoke to the Dr from Costa del Sol and he told me that they have decided to do a skin biopsy on Monday at the Costa del Sol. He stated that it was est to start with this - it should be just like an injection with a fine needle. He said that with a muscle biopsy they would have not been able to use a local anaesthetic as it can affect the sample and that after what I had told him about Talia's sedation with the MRI she had in February, they decided it may be best to start with a skin biopsy.

I spoke to him and asked him some questions like ,
'Do you think she definitely has a metabolic illness?
'What will we be looking for in a biopsy?'
'Are there curable metabolic illnesses?'
'How serious an illness could she have?'

He was very supportive and answered the questions to the best of his ability - although it was a pretty negative picture. He said that they were pretty sure she probably was suffering from a metabolic problem as the lactic acid in the spinal fluid and blood lactate were elevated, that they were looking at several fairly serious illnesses and the extent that Talia was affected would just depend on exactly what type of illness she had - some patients die in early infancy and others do not get diagnosed until adulthood - so I am just praying Talia's condition is not so serious.

Anyway I also spent time on the web checking out metabolic conditions. I felt stronger this morning and on days like this I choose to do research as most of what I read is pretty awful. However I want to know what is going on and I want to know what questions to ask and regardless of what any doctor says, I am going to do my best to build a good life for my princess.

I recently saw a natural doctor who said that he felt that Talia would struggle through her first five years but be fine thereafter - this thought gives me so much hope. I am not one to give up. Th estories I've heard from friends and physios about miracles that occur everyday - children who are told they can never walk but do, children who survive against all odds, these give me hope.

Anyway, next appointment Monday - I must say that I finally feel that I have a good team of doctors there - they are quite caring and supportive and very professional. If any mum needs help on who to se, please contact me.

Anyway must sign off - girls are singing in a theatre production tomorrow, need ot ensure their clothes are prepared - the joys of motherhood!

We can do it!

2008-06-17T21:17:00.003+01:00

Today became a stay at home day - a rare thing for me. My eldest daughter had a high fever overnight and I decided to keep her off school today so hence ended up having to cancel my physio appointment in Aprona. I have a pretty bad cold today so to be completely honest, a day in with hot cups of tea sounded cosy and relaxing. Sometimes the simplest things in life can bring so much comfort and pleasure! Thankfully my daughter's fever seemed to dwindle away and she was all sparks again by midday! After watching part of Harry Potter, my husband whisked her away to see her aunt and uncle and their new baby once we had decided that she probably had suffered a mild form of sunstroke.

I sneaked a short cat nap with Talia and then spent the rest of the day playing and doing physio with her. I put her in her 'plano' ( orthopedic walker ) but she wasn't too straight so I took her out again.

A 'plano' is quite a weird contraption that is made for kids to be held upright without having to put all the weight on their feet. It gives them the sensation of walking and helps to build up their hips and leg muscles. I am still waiting for Talia's own plano so in the interim I am using one that a physio lent to me. Getting a prescription for the contraption is another story in itself - too late and too tired to explain the process now (maybe tomorrow..)but if anyone out there in this area needs to get one, you can contact me and I'm happy to tell you about the procedure ( or as much as I know as I haven't yet received the final product!)

Anyway I tried to get Talia in a sitting position around her new drum and was ecstatic to see that she held the seated position for at least a minute - this is a huge step forward and two weeks before her first birthday. I also took out some small mettalic cars that we got from imaginarium- they are cute little cars in a metal box (actually for age 3up) but Talia uses them at Aprona. It helps her to practice lifting and helps her finer motor skills. However usually the metallic texture makes her pull back as she has hypersensibility in her hands. Determined to get her over this fear, I bought the cars on Wednesday and have constantly been showing them to her.

Today she actually touched and tried to move them - another breakthrough.

We had a great day, we played lots and I read her lots of stories - it was so nice just to be!!! We achieved lots in a chilled way. Oh and I forgot to mention that she loves her new drum (early birthday present) from imaginarium. When we first gave it to her, she looked at it blankly and now she's drumming away like a pro. The physio told me that this was good for her muscle tone in her arms and hands.

My home is looking like a stimulation room - big red ball in the living room, alongside a plano, bumbo seat etc!!!!

Just another Manic Monday Not

2008-06-16T20:15:00.003+01:00

Well, I started my day expecting it to be hectic but it was great cos mum was with me and everything seemed more peaceful. I left Talia at home with her while I collected the girls from school with Andrew and that just made life so much easier, especially since I have a terrible cough and a slight cold. Then mum basically helped to reorganise the girls room whilst she ordered me tolie down with the girls. So I curled up with my three princessed and watched a traditional feel good romantic comedy, 'One Fine Day'. The girls were so relaxed and I got to rest a little as I was exhausted.

LaterI brought the girls down for supper and was so happy to see Talia pounding away on her new drum - uptil now she has seemed disinterested in it but today she looked almost professional. When she is so sparky and reacts like this, we feel so much better as she looks like a normal little girl. The other two were generally well-behaved despite squabbling over marbles!

My Talia

2008-06-15T22:00:00.001+01:00

Talia is just my gift - so much fun and special - the girls love her so much and together we have a strong bond. I just wanted to say that as the lasts post have been fairly negative but I assure you that everyday has a special moment for me - like this image of me with Talia reading a book.

Talia's teeth

2008-06-15T21:55:00.002+01:00

Well, poor little monkey has been poorly all weekend - she started with a high temperature on Saturday whilst we were out celebrating mum's birthday - poormum I really didn't want her to have to think of me on her birthday but she was concerned about me cos I seem to be catching a cold too - I think I just need to have one day at home - I need my bed and some quiet an dsome time to balance myself. My exhaustion is making me impatient and ratty and that's not how I want to be. I want everyday to be special - I really have to work on myself.

Friday Speech Therapy a Disaster

2008-06-15T21:52:00.003+01:00

Well - it is really not a great week - lets get it over and done with. Speech was terrible today as Talia refused to respond - alll she wanted was her butterfly rattle and screamed at anything else - she just would not coorperate. However in thge afternoon, I took her swimming with the girls an dshe was in her element - she looked so happy. This is what is important to me, that she is not suffering and that we enjoy everyday to the full.

I can see clearly now the rain has gone!

2008-06-15T21:44:00.002+01:00

What a day, what a week. Thursday morning was tough - after such a difficult day before. However a visit to a new physio for additional therapy and my mum's positive nature pulled me up. I had a good cry with mum, and then it was onwards and upwards. The physio was so positive, sure that Talia would walk and sure that she was all there mentally. She was very kind and lent me a plano until I get my own ( like an orthopedic walker to help build up her leg muscles). She also lent me a Bumbo seat which Tailia loves. I went to mum's after - just needed to be under positive influence - also needed to sleep - felt emotionally exhausted.

The Dr from Costa del Sol called and told me that they did find elevated lactic acid in the spinal fluid which was not what I wanted to hear but at least everything is just elevated and not sky high - elevated can mean borderline.

Ups and Downs - what a week

2008-06-15T21:16:00.002+01:00

This week has been tough, dare I say. I guess I am just a little exhausted between physio three times a week, swimming twice a week, speech therapy twice and then there's the other kids, the meals, the home and the business - trying hard to balance the balls but hit rock bottom when I ran out of nappies last Sunday. How on earth can that happen - I felt so frustrated that I had forgotten such an essential thing! Sometimes big things don't get you down - its the little niggles that tip you over. But hey, I'm upright again (well more or less). Other mums going through this will know how I feel (I hope). There are good days and bad days - days when I can walk around with a bounce in my step and days when I feel I am living a dream.

On Wednesday, we were due at Materno Infantil again - yep my favourite place. Its crazily chaotic - so many kids needing attention. The hospital is reknowned for being one of the best pediatric units in Andalucia, yet the decor and surroundings are pretty shabby.

We left at 7:30am on Wednesday morning from Mum's home as my parents took the girls to school for us so that we could head to Malaga. At 9:40 I get a phonecall to say my 10am appointment is cancelled and to just turn up for the 12pm one. So two hours to kill in Malaga with a tired baby!! My husband walked around in mobile office mode speaking to clients, negotiating deals and running the business. I used the time to get some of Talia's b-day pressies ( will be 1 in two weeks!) and buy my eldest daughter a much-needed bathing costume.

Once at Materno we waited patiently for our 2 appointments - one at 12pm and the other at 12:10pm. We got in to the first at 1pm - it was fairly run of the mill. TAlia weighed 2.670kg and height is 62/63cm. Anyway after that we were rushed off to the neurologist. This was the appointment we were supposed to have at 10am but apparently th esecretary cancelled the wrong doctors patients so we could have turned up at 10am - what a mess. Anyway the Dr looked at the brain scan that we had from the UK and concluded that she saw some retardation in the myelinization of the brain - something the DR at Costa del Sol had mentioned to me. She said she suspected a metabolic illness. We then opened up to her and said that we were undergoing tests in the Costa del Sol and that lactate levels were high - an indicator used in metabolic conditions. She was in agreement with our Costa del Sol Dr and felt that we needed to do a muscle biopsy.

What she said actually was pretty scary and uncomfortable. She said that whilst some metabolic problems could be cured, the majority were extremely complicated and progressive an dwhist our daughter was progressing, this could just suddenly stop. To be honest, I felt quite ill. But at the back of my mind i kept telling myself - this is all guess work, nothing has been proved and she is getting better each day. Anyway we should do the muscle biopsy as it may be curable but we need to move fast as any damage to date cannot be erradicated but future damage can be avoided. So now I have this little bee inside me that wants to move so fast but you know what a process like this is like. I am just one mother fighting her corner.

We t hen went on to see an endocrinologist who agreed that metabolic illness was a concern - however the digestive unit did not think that the figures were elevated and that she would just need growth hormone - I pray that they are correct.

It was quite a day and we arrived back emotionally exhausted - just days ago we thought Talia looked great - now she may have a grave illness. We need to be strong and positive as that is the only way through this.....

Back to Spain

2008-05-29T13:50:00.002+01:00

The rest of our UK trip was a whirlwind - the days following the brain scan were filled with trips to the geneticist, neurologist for further opinion on the scan and a few trips to a laboratory for bloodtests. My poor Talia -constantly poked and priked. Taking blood was traumatic as she was still bruised from earlier tests and she was not well hydrated. Well to cut a long story short - we are back in Spain and are still seraching. The last few months I have just been focusing on physio, swimming and speech theraphy. We are at Aprona everyday now and are working hard to build up Talia's muscles. The geneticist has come back with results and so far all genetic testing is fine however he has pointed out that Talia's lactate levels are high, suggesting that there may be a metabolic poblem somewhere. Further to these findings, I called Materno Infantil who do not think the elevation is significant - however after Talia lost 100g a couple of weeks ago, I decided to go back to the Costa del Sol and re-visit a doctor I saw there in November. To be honest, the service I have received there has been far superior to the servicein Malaga. Yesterday they repeated the lactate test and within an hour had the results - incredible!! Unfortrunately it is still high and this means that we need to do further testing in terms of a muscle biopsy. Apparently there are only two places in Spain that do this so we may have to head for Barcelona.

The doctors yesterday were fantastic andthe nurses in the Costa del Sol were playing with Talia. There were about 3 doctors watching her and they even tried to analyse a new test that they have never done before - for once I felt as though somebody cared here in Spain. Finally I could see a team coming together.

The doctors also took spinal fluid yesterday - they did a lumber puncture. They warned me that Talia may suffer from headaches and backache afterwards. We were sent outside to wait as they needed to concentrate without us around. It is so difficult to watch your child suffer - I feel emotionally exhausted.

Last night was awful, Talia cried lots and was obviously in excruciating pain - I was beside myself as nothing would calm her. Ithink that holding her only worsened the back pain. Eventually we put on my mum's deep relaxation CD and within 10 minutes, Talia was asleep. We repeated this a couple of hours later and managed to soothe her again.

My poor baby - she is beautiful and I hate to see her suffer.

Back to blogging

2008-05-21T22:21:00.002+01:00

Well the days go by and each day I have the intention of signing on and writing but life is pretty hectic and full for me at the moment. I am juggling three kids alongside attending sessions at Aprona each day and trying to help my husband by working from home whenever I have spare time (basically after kids go to bed!). Anyway I hope to continue my story and I go back now to our time in the UK. Below is an extract from my diary of a day that still sticks out in my mind - the day of the MRI scan:

Day 6 UK
An extract from my diary

Woke up bright and early today – my stomach was in knots. This was the big day. I prayed so hard. We parents make so many decisions and sometimes the responsibility is terrifying.

Two coffees later, we found ourselves in the paediatric ward of the hospital. We read through numerous text messages from friends and family all sending well wishes and love. These little messages are so wonderful, keeping us constantly aware of the love and support we have. The sky was blue and it was a crisp day – I was longing to go for a walk outside and stroll around with Talia in the pram

My husband and I watched everything and everybody like hawks – we watched the quantity of sedative etc. I was really quite anxious but tried to keep my façade of looking cool, calm and collected – inside I felt slightly sick and jelly-like. Talia was weighed and she is a total of 4.180 kilos.

We were taken into a room where a drip was placed into her hand – this was horrible to watch but luckily the doctor was so professional about it that it was soon over. Talia looked a sorry state with her arm all bandaged up. Luckily the sedative worked quickly and within minutes she was fast asleep. We were given a special machine attached ot her tiny thumb which gave us a reading of her pulse and oxygen absorption level. I watched the screen and refused to take my eye off it.

Seeing Talia sound asleep, the nurses managed to bring our appointment forward to 10am. I was allowed into the room with her during the scan and after answering a few questions I was allowed in. We had to lie Talia on the bed and cover her ears with special headphones. MRI scanners make a very loud noise and this is why Talia, myself and the nurse all had to wear headphones. The room felt cold and icy – thankfully, I had brought Talia’s snugly blanket.

The scan was, thankfully, over quickly. I just kept praying visualizing, my grandfather, great uncle and Guru watching over Talia and protecting her. She looked so vulnerable.

Now I’m back upstairs sitting next to my Talia waiting for her to wake up. I have never been so desperate for her to wake up before. The doctor has just come up to see us and says that he’ll get back to us later this afternoon regarding the results and how to take all this forward.

13:15 – Here we are still waiting for Talia to wake up – she is still sleeping and Andrew and I are a little nervous – her eyes are starting to flutter. My husband has just spoken to my mum and she is doing some ‘Om trayam bhagams´ ( Sanskrit mantra for Talia’s well-being and protection) with my sister in law. I really don’t like this sedation – I just want my smiling Talia awake again – she has been under 9ish.

21:00 Talia finally woke up around 16:30 much to our relief – we were worried we would have to stay at the hospital. What a day it has been, I am emotionally exhausted. Thankfully we are staying with my brother-in-law – its good to have supportive family around. My sister-in-law has just been a pillar of strength and has kept my other two girls busy – they have had a wonderful time – walks through the parks, playing with squirrels and sleepovers with their cousins. The doctor came back with the results and much to our relief there seems to be no gross damage. Despite the latter, he would like us to see a specialist neurologist in Harley Street tomorrow. Right now, I am so exhausted and need to lie and watch my baby.

Day 3 - Appointment at the hospital

2008-03-06T11:55:00.002Z

We got up bright and early - this was the big day. I lept out of bed at 5:45pm - after all we had looked forward to this day for months. Each doctor, each new medical institution brings with it new hope, excitement and a little nervousness too.

Perhaps this would be THE DAY - the day when we find out what is going on, the day - maybe it will put an end to the waiting , concern and uncertainty - maybe will get a diagnosis... Or will it open a new can of worms - whatever it is we are moving forwards and we need to do that.

Anyway I got the girls ready and we had breakfast at around 7am before heading to my brother-in-law's house. My husbands parents and my sister-in-law were waiting for us - we deposited our kids with their grandparents and cousin and then my sister-in-law drove us to the hospital. We really are so lucky to have so much wonderful support from the family. Everyone keeps coming together to help us and at least it means that the other two girls can enjoy their holiday. Despite the anxiety - this is one of the most beautiful things that has struck me at this difficult time - I have received so much strength and support. Friends calling up - even acquaintances that I barely know come up tome and offer to help; Talia beautiful toothy smile and warmth attracts people from everywhere. Her drastic small size alongside her adult expression and questioning eyes attact attention from everywhere.

The hospital was really very nice - very well done up and professional looking - quite different from the Spanish equivalent. The hospital was huge and spotless - I know that you should never judge a book by its cover but regardless the efficiency and cleanliness did help me to relax. This alongside my sister-in-laws presence was very soothing.

We were seen quite quickly - my husband and I are used to spending hours at hospitals - he always brings his computer and sets up a mobile office but this time the wait was quite short and we sat chatting to my brother and sister-in -law.

The Dr was very professional. He gave us lots of time and attention. He already knew what to expect as he had studied Talia's results and photo prior to our visit. After a thorough examination and full patient history, he explained that he had expected Talia to lookk more 'syndromey' - she looked better in the flesh than in her photos. apparently her facial muscles seemed more droopy in the photo but here in person she seemed to have better muscle otne in her face. His main concern was her weight - she is way under the charts and is diverging from the norm rather than converging and this troubled him.

He finally looked at us with a frown on his head and a look of concern - he was kind and empathetic and obviously what he wanted to tell us was tough and he did not want to be the bearer of bad news.

Anyway he said that we needed to check her brain development. He was concerned that the 26 week bleed had caused gross damage to the brain and felt the next step needed to be an MRI scan. We discussed this and then he agreed to call us that afternoon with an appointment for early on in the following week.

My husband and i came out in a daze. Thankfully his brother and my sister-in-law were with us. We were strong but I could feel the tears welling in my eyes. One side if me wanted to ball my eyes out and the other side of me just kept saying,'you're fine. Look around you. You are so lucky - you have two beautiful girls and this gorgeous baby - don't give in'. Then I tried a yoga tool called 'Pracktipakshabhavana´ -replacing negative thoughts with positive ones. I thought of numerous cases that I knew of - parents with twins who were both severely handicapped and where the parents couldn't even afford a pram, children dying and living in war zones and I also thought of many kids who do suffer brain damage and still manage to have relatively good standards of living. Deep down I know that we will play with whatever card we are dealt and that we will cope no matter what. Nevertheless it was an emotional day and my heart felt heavy - I had a dull ache in my heart. I looked into my husband's eyes and knew that he felt the same - we are in this together.

Our family were fantastic and I was pleased to get back to my mischievous kids. We stayed with my sister-in-law until after supper - we needed the emotional support that the family were providing for us