ONYOM - A NEW SITE FOR PARENTS

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

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


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

Physio is fun - Tália on her bike

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

My Baby can Wave

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

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

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

Tests and more tests

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

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

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

Vibrational Therrapy

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

The first step to walking and independence

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

Speech Therapy with Mum

Do something about it

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

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

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

A tad insecure

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

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

They have found Something

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

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

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

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

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

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

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

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

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

Well, so much time has passed since I last wrote - the time of the awful swine flu and illnesses Tália faced through November and December. However the last month has been extremely positive and the New Year inspired me to start afresh and throw myself into focusing on Tália's therapies.

My New Year's resolutions are to get her walking, talking but more than anything else keep her healthy and pray that she continues to be the contented and happy girl that we all adore. But as you all know, my life is a roller coaster - I have some of the most amazing days and some frightening days.

Swine flu saw Tália fall back down to 6 kilos (with clothes on) and I have to admit I felt very discouraged. My heart plunged to see the endless hours of work, the hard earned weight just disappear in days. But, amazingly enough, she has miraculously bounced back. When she had swine flu, I really did not know which way my journey would go - where would we end up, how much could Tália's little, tiny body take. So I put off weighing her for a while and then I noticed that she was slightly chubbier - her trousers seemed tighter and my arms felt tired after carrying her for a while. And guess what???? She has passed the 7 kilo mark - yes in 1 month, she not only recuperated her weight but put on the most ever in a month since she was born. I am ecsatic, it is a miracle. It is like the sign I was waiting for to help me with my decision whether to tube feed or not.

I am trying though to take all this in my stride, staying excited but maintaining calm as my life is filled with so many ups and downs that I need to try and stay positive but realistic.

Despite the change in weight though, the last month has seen Tália reach many milestones.

- Tália has learnt how to eat and feed herself using her hands - previously she couldn't pick things up and refused to touch food. I thought I may feed her purees forever but now I get such pleasure out of seeing her digging into her Spanish Omelette and chomping at her chocolate whilst being able to wolf down a Happy Meal.

- Tália's speech - whilst still delayed and no very clear words, she is trying to communicate. Tália is making more sounds and seems to be more switched on.

- Muscle tone - Tália's tone has improved. November and December were terible, she could barely sit but now we have her standing again and I am determined to get her walking. She has been using a machine like a power plate, called vibrosphere, recommended by my incredible physio,Ana Duarte. My in-laws and mum bought the machine for her and she has been on it nearly every single day and the vibrations seemed to have made a real difference to her muscle tone.

-Sleeping in a bedroom with her sister - we no longer have Tália sleeping with us, we finaly had the guts to move her and she sleeps beautifully with her sister. So we have gained some space in our room plus she is closer to being more independent. It is easy to shelter a special needs child, easy to baby one - especially one so miniature - but we want her to feel older and independent.

Good Days, Bad Days

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!!!