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.

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.

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.

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.

Talia head control

At two and a half- three months of age, I started to worry as Talia´s head was really floppy. Cognitively she seemed all there but her muscles and body just seemed so week. She seemed like a rag doll. Car trips were really scary as her head would bob up and down. My husband and I would drive - one of us constantly trying to hold her head up and also watching out to make sure she didn't vomit. Cognitively she seemed ot be developing although 3 months is still early to tell. Thankfully I spotted Talia falling behind immediately as I have 2 other kids and clearly remembered them at that age. My paediatrician was great and monitored us on a weekly basis but she stayed around 3 kilos for ages - now at 7 months she is only 4.45 - so you can see how slow everything is. At about 3 months we had a scan of her head done through the fontanelle and thankfully it was clear. We decided to give her till four months as really she could have just been a slow developer and given problems in the womb - perhaps she would catch up. By four months her head control was starting to improve and cognitively she was all there - she could follow us around the room and chuckle. She was the most loving and warm baby. My two other girls were fantastic with her, constantly stimulating and cuddling her.