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???

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.

Charged with Energy

Yesterday we went to see Amyn Dahya and his wonderful wife, Karima again. He said that although Tália had had a bad month in terms of her cold virus etc, that overall he saw an improvement in her. She has been looking better again, thank God. Amyn did a meditation and gave us some holy water. I left his place feeling positive.

Today Tália has had a good day so far. She had physio this morning and speech therapy. I tried not to get involved today - I sat in the room and watched but did not do much. Normally I interact a lot with Tália throughout physio; I sing songs, tell stories and feel a little like a juke box!! As of late though we have noticed that she plays up when I'm around, constantly moaning to me or looking for approval. By staying back a bit, she was better able to focus. So actually, it was very relaxing to take a back seat and watch the whole session from afar.

Back at home, Tália has been playing with her Xylophone and bouncing around with her aunty Susan and then at about 3ish she finally decided it was time for a snooze. I can hear her waking up now so I guess its time to sign off!

A Lovely Birthday

Well yep that's right - it has been my birthday this week and despite the rocky road with Dr's etc, its been a nice week. Birthday celebrations started early - after all if you can't enjoy now, when can you?? On Friday, Susan and her family came round for supper. We had a lovely evening - Susan and I cooked a big pot of Chilli and to make it even more of a Mexican Night, I tried my hand at delicious Margaritas! Then mum and Dad invited us to a hotel near Gaucin for Saturday night to jointly celebrate my birthday and their anniversary. The night away was just what the doctor ordered - lately all trips have been formed around trips to see Dr's - it was so nice to get away for pure enjoyment and not have to take any medical records with us. The girls just loved it - the mountain air worked a treat for all of us and even Tali looked all the better for it.

The biggest birthday present was that when I awoke on Tuesday morning, not only did the sun appear after torrential rain but Tália was able to return back to physio after a long time. It was great to see the physio again - she is fantastic with Tália and really loves her. It was just fab to get back into some kind of routine and structure. Seeing Tália getting her strength back was so good.

And the day did not end there....my husband surprised me to a dinner out with him. I thought we were going to get a take away only to find my in-laws hiding downstairs ready to look after the kids so that we could have some 'time out'.

So good birthday week overall. Now time to prepare for Birthday No. 2 - it is my middle daughter's b-day on Sunday so its going to be another week of celebrations!!

We can do it!

Today became a stay at home day - a rare thing for me. My eldest daughter had a high fever overnight and I decided to keep her off school today so hence ended up having to cancel my physio appointment in Aprona. I have a pretty bad cold today so to be completely honest, a day in with hot cups of tea sounded cosy and relaxing. Sometimes the simplest things in life can bring so much comfort and pleasure! Thankfully my daughter's fever seemed to dwindle away and she was all sparks again by midday! After watching part of Harry Potter, my husband whisked her away to see her aunt and uncle and their new baby once we had decided that she probably had suffered a mild form of sunstroke.

I sneaked a short cat nap with Talia and then spent the rest of the day playing and doing physio with her. I put her in her 'plano' ( orthopedic walker ) but she wasn't too straight so I took her out again.

A 'plano' is quite a weird contraption that is made for kids to be held upright without having to put all the weight on their feet. It gives them the sensation of walking and helps to build up their hips and leg muscles. I am still waiting for Talia's own plano so in the interim I am using one that a physio lent to me. Getting a prescription for the contraption is another story in itself - too late and too tired to explain the process now (maybe tomorrow..)but if anyone out there in this area needs to get one, you can contact me and I'm happy to tell you about the procedure ( or as much as I know as I haven't yet received the final product!)

Anyway I tried to get Talia in a sitting position around her new drum and was ecstatic to see that she held the seated position for at least a minute - this is a huge step forward and two weeks before her first birthday. I also took out some small mettalic cars that we got from imaginarium- they are cute little cars in a metal box (actually for age 3up) but Talia uses them at Aprona. It helps her to practice lifting and helps her finer motor skills. However usually the metallic texture makes her pull back as she has hypersensibility in her hands. Determined to get her over this fear, I bought the cars on Wednesday and have constantly been showing them to her.

Today she actually touched and tried to move them - another breakthrough.

We had a great day, we played lots and I read her lots of stories - it was so nice just to be!!! We achieved lots in a chilled way. Oh and I forgot to mention that she loves her new drum (early birthday present) from imaginarium. When we first gave it to her, she looked at it blankly and now she's drumming away like a pro. The physio told me that this was good for her muscle tone in her arms and hands.

My home is looking like a stimulation room - big red ball in the living room, alongside a plano, bumbo seat etc!!!!

Talia loses weight

Well, here I am at home with baby Talia on my lap. We have been out all morning - first at Aprona where she did vey well and manged to grab a rattle with both hands whilst balancing on a huge red exercise ball, then we went to see my eldest daughter´s teacher who was very happy with her progress and finally we went to the chemist to weight Talia. I walked in with my sister-in-law - a number of the pharmacists came out to watch Talia being weighed. She was wearing the same as last week - pink trousers with tights underneath, a vest and a long sleeved top. However my heart fell as I saw the reading on the scales - her wait was 4.43 - she has lost 20grams - how on earth can that be when she' eaten well and I've been adding Maxijul to her food.

So before continuing with our story from where I last left off - I needed to get the weight thing off my chest. Thankfully we are off to the UK next week to get another opinion.

Weighing day tomorrow

Well before continuing the story - just thought I´d say - tomorrow is weighing day. Last time I weighed Talia, she weighed 4.45 kilos in her pink trousers and a thin top. Fingers crossed for tomorrow. Today has been a good day - Talia has picked up her drinking cup and fed herself some water, after missing a few times and squirting water in her eye - she is also trying to pull herself up from a lying down position and using her right hand a lot more. Until late December- she barely moved her right hand, we did not know if she could move it. Today she was starting to reach for toys with it. Each development like this brings new hope.

Tomorrow I have Aprona in the morning - I go twice a week for physio. They are fantastic there. I´ll carry on with the Talia story tomorrow.