Its been a while

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

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

Just when everything seems to be going smoothly...

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

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

ONYOM - A NEW SITE FOR PARENTS

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.