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.

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.

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.

Tália weighs 4.93 kilos

Dare I say with her clothes on! Anyway at least she is putting on weight and not losing it - I think on our last check, in the same chemist, she weighed 4.7kilos ( approx 6 weeks ago) but need to check my notes to be sure. I know, can you believe it, I cannot remember exactly how much she weighed last time. The Dr told me not to weigh her so often and to let go as each week would be so painful - the whole process of looking at the scales and seeing them go up by a couple of grams was just too much so I literally took his advice and it seems to be working.

Over the last couple of weeks, I have been giving Tália Oat Milk. A number of homeopathic doctors and natropaths have suggested that I cut down on any cow's milk and infant formulas and change to either rice or almond. A friend of my mum's suggested Oat Milk and to be honest, it seems to agree with Tália better. Fingers crossed.

Had Speech therapy in Aprona today and then Physio in San Pedro. Mum came with me to the physio - she usually comes with me on a Thursday and its lovely to have the extra hands and support - usually by Thursday, I start feeling tired and its great to spend the morning with mum. Then usually we bring the girls to her house and we spend the afternoon together. And the last few weeks, my brother and sister-in-law have come with my new darling Indy. Oh I do love being an aunt. Indy is gorgeous and growing fast ( thank God). Seeing a normal sized baby these days makes me feel so happy and relieved. I looked around the room yesterday and just said how from just two of us (my brother and myself), did we end up with such a troupe?? And so many girls! But to tell you the truth - I have a soft spot for girls!

So yesterday afternoon, we all went swimming (not Indy of course - at two weeks, she's a tad too young!!!). My girls were doing their usual water gymnastics with my brother and sister-in-law's sister - standing on shoulders and all that jazz and Talia was swimming in her ring soaking up her independence, really working her muscles - oh I do love the Summer. These moments, these snapshots are so special to me - I don't know what Tali has, how serious it is, whether she has a short time frame in this world or whether she is just going to grow out of what she has but regardless of that, these moments are precious. Anything can happen tomorrow to any of us. For today we are all happy and well and nowadays these moments make me stand back and just record - record the bliss of the present.

It is easy to get stuck in the future and sometimes research does that to us - what is going to happen? BUT none of us know what tomorrow will bring and for today all is well ...

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.