Moving Forwards

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

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

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?

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

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

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

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

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

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

Costa del Sol on Orange Alert

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

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

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!

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

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

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

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

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

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?

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

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

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

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?

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

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

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

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

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!

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!!!!