Good Days, Bad Days

Well it has been a real roller coaster ride. On Sunday, Talia looked positively awful, she was so chesty and refusing to eat again. I went to bed with a heavy heart fearing another trip to hospital. But then, all of a sudden she woke up looking like a new person. She had more energy and actually ate three good meals. She is on a number of natural and homeopathic remedies and they seem to be helping her lots. I really do see allopathic and natural medicine as complimentary - I have needed both for Talia and it concerns me that people often see them as two sides of the spectrum.

Anyway she had a fab day yesterday too, slowly with more energy - able to sit up again, able to chat a little but then just as I was starting to relax, we had an awful night last night. But what on earth caused her to cry all night long? It really puzzles me. I thought perhaps she had kicked the side of her cot and hurt herself.

Anyway I have just spoken to the physio because after examining her, my gut tells me that her hip has come out of its socket a bit. I have given her an anti-inflammatory and she has eaten so now I am just watching her. If it gets any worse I will take her to the physio to check it out and then perhaps to the Dr.

She has just managed to fall asleep so that is a good sign - she was in too much pain last night to rest. Lets hope that she wakes up feeling better.

My oh my - it is already December - I feel as though the last three weeks have been about survival and getting through them. It is pretty scary to see Talia sick - she is so small and skinny that seeing her lying down and so floppy does thrust me back into reality. I can see just how vulnerable she is. Yet in our own ways, aren't we all?

I am so looking forward to going back to our physio sessions and all the activities - we have so much fun together and we really do enjoy the moment. I have seen Talia improve so much over the last few months. We just need to get over this hurdle and continue with the race.

I have finally received the muscle biopsy report from Barcelona. I spent quite a lot of Monday translating it - dare I admit that I quite enjoyed the challenge of translating the medical jargon? Wow, I learnt so many new terms - it really got my brain ticking. Probably not a bad thing since I have spent most of my time watching and listening to Baby Signing Time!

It appears that nothing abnormal has been picked out yet. I have written to the Drs asking whether this means Tália is not a mito patient. It appears that there is no mito problem in the muscle tissue but what exactly does it mean in real terms. Her lactate seems to be at its lowest level ever. However the mito medication - Q10 and Carnicor do make a big difference to her. Oooh I really don't know - you think you have a dignosis and then you end up back at square one.

Swine Flu confirmed

Well, we got the results back and believe it or not they came back POSITIVE FOR swine flu. We have now brought Talia home and she is doing ok. She is weak and very coldy - she has lost her voice but her colour is so much better since they put her on the drip and rehydrated her.

It is so good to be home. Talia did not sleep well in the hospital - she found the drip very disturbing and cried all night complaining by saying Ay! Ay! My poor baby was very unhappy. Thankfully though they prepared everything for us at the hospital with the carnicor she needs etc. We have decided against Tammiflu as Tali has now had the flu for a week and the fevers have calmed down significantly. Weighing up the possibe side effects of possible diarrhoea and vomiting, we decided against it. However the Drs have told us to return if she takes a turn for the worst.

Our physio, Ana hs been amazing, she spoke to the homeopathic Dr and and bought us loads of vitamins and suplies to boost Talia's immunity and help her cough.

Could Talia have Swine Flu?

23rd November 2007

Well, here I am in the Hotel del Sol, looking out the window of my five star room.

Back to life, back to reality… I think I should write a visitors guide to hospitals. By the way I resemble an alien – poor Talia had the fright of her life when she awoke from her sleep - her mum had turned into the green boggy monster. For here siteth I dressed in green overalls and a mask, looking like an alien from out of space, lest I should catch the dreaded lergy from the baby who practically slept, breathed and peed over me yesterday – weird really, especially since she got the flu from me!!!!!

Anyway she has been tested for the dreaded GRIPE A or dare I mention S----- flu. We, our whole family were ill for the last week with high fevers, coughs, sore throats and achy bodies and I did my best to avoid Talia – I was terrified she would get ill. She spent one day with her granny, one day with Susan and the last few with me…. She seemed to be battling well until she stopped eating yesterday and started getting all chesty. That was when I knew that she needed to be hospitalised. She wouldn’t even take water.

Well she is now on a drip, poor baby. She had a hard time – it took them about 40 minutes to take her blood and put the drip on – I wasn’t allowed in with her and all that I could hear were her heart-wrenching cries. Why does my poor baby have to go through this – she is my angel.

Feverish Baby

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

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

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...

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

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)

Talia grows and Passes 6kg Mark

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

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

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

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

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

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?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Talia trying to talk

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

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!