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???

Costa del Sol yet again

Today I had an appointment in Costa del Sol hospital. My best friend, Susan came with me to give me moral support. It was pelting with rain and awful driving conditions so it was so good to have the company and support. Well we made it to Costa del Sol in good time and after a nice cosy coffee and warm breakfast at the cafe ( which I have to admit does delicious breakfast at a very reasonable price!), we wandered around the hospital's gift store - Susan even managed to do some Christmas shopping. There's loads of interesting stuff there - we may go back just to visit the shop sometime!

Well, then the adventure began - we made our way to the out-patients floor and guess what? My printed out page said that my appointment was in 'neurology'. Can you believe that when I asked the nurses where neurology was, they said that it didn't even exist. Finally we were pointed in another direction and after asking random people, we found the waiting room. Well, stumbled upon it because it had a hand-written sign covering a printed one on the door, saying 'pediatra' - whether neurology actually exist s there or not I don't know, and evidently nor do the staff - so why my appointment sheet said that on it, is beyond me. Susan was pretty shocked. It seemed bizarre.

Well finally we were called in to see the doctor. But guess what? I was expecting my usual doctor, I was expecting a little consistency, I was expecting an update on the results from the skin biopsy - what a mistakea to makea.

The Dr had never seen Tália before and said that he would chase up the biopsy - yeah we know that - I discussed that last week with another pediatrician there. Did I really need to drive through torrential rain, drag my friend out and miss Tali's physio for this - re-arrange my life and drag my husband out of the office to pick the other two kids from school??? To see someone who knew nothing of Tali's case - she wasn't weighed, she wasn't measured. He only checked her chest because I said that he may as well, now that I was there - otherwise nothing would have been done.

So where is my continuity?? Tali has lost weight over the last month and so what? Doesn't anyone care - does anyone realise? Do they even know her name? They certainly don't know her age - the Dr asked me how old she was. When I suggested that he look at my notes, he made out that he already knew everything.

So what do I do? Where do I turn? How can someone see an improvement if they haven't seen the child before? The medical world is sometimes frightfully ridiculous - what is science? Is medicine really scientific - is that really how we measure behaviour? Surely science should at least look at growth charts, weight, development milestones or is science merely waiting indefinitely for a result that may not even show anything. If Drs don't look at my child - how will they ever know how she is?

I feel utterly disappointed - what happened to vocation - what happened to warmth?

Well thank goodness my friend was with me and I decided not to be my usual fiery self and kick up a fuss - I just played a silly dodo and smiled and was pleasant and said I would really appreciate it if he could chase up the results. I was proud of myself for keeping calm - what's the point of spending extra energy - I need as much as I can get.

Well its back to holistic - medicine does seem so far behind. I have one fantastic Dr at Costa del Sol but quite frankly if it weren't for him, I would have no hope. I think I will go back to Hospiten for regular check -up's because my pediatrician there is so warm and you can tell he really loves his job. He really loves Tali and I know he will always do the best for her.

Anyway, despite all this, Tali looks great this evening - she is getting better and she is trying to chat - I really am communicating with her.

Well, Susan and I soon put the hospital behind us and went to La Cañada to feed Tali and I also managed to get my middle daughter her birthday present - it her birthday next Sunday (5th October).. And what is the present?? You'll have to wait till next wee as its a SURPRISE. Hee! Hee!

Which way do I go?

I woke up this morning feeling confused. What do I do next? We are waiting for results back from Tália's biopsy but apart from that, I feel quite forgotten by the medical world. No one has properly checked Tália here since June and she has not put on weight - surely a 4kg 14 month old should be monitored monthly. So I guess I need some consistency but from where?? Do I use a local general GP or a private pediatrician or do I need to chase the Costa del Sol or should I go back to Materno. I am in limbo and need a plan. Apart from positive and holistic approaches I need some kind of medical support but how to balance so many Drs - well just have one I hear you say!! However the Drs are of different opinions and none have seen her consistently so I don't want to close any doors. I think I need to meditate as I feel like I have cotton wool in my head.

They say that when things are so unclear you should wait for a sign - so hey to you up there, I´m waiting - please send it to me and don´t make it to subtle as my vision is a bit blurred at the moment!

Indira brightens up our world

I am so excited! I have a beautiful neice, Indira and she is gorgeous. She was born at 6:14pm and is just a perfect work of art. She is gorgeous - weighs just under 7lbs and is long (50cm). My brother and sister in law were fabulous - my sister in-law went through a perfect natural birth - no epidural. She justbreathed her way through the experience. After a long day (over 12hours at the hospital today), she llooks fabulous. I can't wait to see my little Indy again tomorrow.

Possible Muscular Disorder

In my gut I was worried and in September / October this worry increased. Talia was improving but very slowly. Her weight was a problem but that was not the only thing disturbing me. I was still doing weekly visits to Hospiten usually accompanied by my mum and dad for support as my husband needed ot run our business ( Hamilton Homes) and keep it going. he lost me as an employee so had lots on his hands. My parents and I would make a morning of it - grab a coffee and chat while I would breastfeed little Talia.

We tried so hard to give her a top up with formula but she refused the bottle. I am still trying and she is still refusing. This scared me as she seemed to gag. I worried that she had some degenerating muscular disorder that affected the sucking reflex yet she could easily latch on. At 3.5 months, we introduced cereals to her diet as we discovered that she would take a spoon - feeding times were painful as at first it would take her up to 3 hours to take 6oml of milk with cereal. I would wander whether she wasted away more calories from feeding and would keep turning to the breast.

At 3 months we gave her the rotavirus oral vaccine -Rotarix. The rotavirus is a vomiting and diarrhea bug responsible for many child hospitalizations. It was recommended to me as this kind of bug is dangerous and life threatening to most kids but to Talia that effect would be increased due to her low weight. However this seemed to take a toll on her body and for two to three weeks she was very weak - she seemed to take a step backwards and lost her appetite. Since then I have stayed away from vaccines - I think her body weight is too low to cope with them.

At four months her vomiting improved, although she still had lots of wind. My husband and I were worried as she seemed to have such a weak and frail body - she barely kicked or moved and her hands and arms seemed limp - it was time to take things further and our paediatrician was of the same opinion. Mum´s at school were noticing that she was falling behind and begged me to get other opinions. I did not want to panic as a mum´s connection with her child is strong - what hope did Talia have if I lost the plot. My Hospiten paediatrician was very positive and kept me going at this time although we mutually agreed that it was time to search further and get specialist advice

We would swing in roundabouts - she would have good and bad days - on good days I was sure everything would be fine - perhaps I was just paranoid and on bad days, she would barely move - once mum put her down on the sofa, her hand got caught behind and she did not flinch. We were scared as some basic reflexes did not seem present. Thanks to the positive input and support of my family and husband and kids we all have just kept going and always positively and Talia is a very happy baby. Despite this agony - she is such a pleasure to be with and seeing her with her sisters who so adore her makes me so happy.

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.

Talia´s birth

Prior to Talia´s birth, I was always a little concerned as she was not as much of a wriggler as my other two kids - deep down it was a nagging thought in my head.

28th June 2007
Talia was born via cesarian. She was a breech baby so never turned. At 39 weeks plus three days they decideded to do a c-section. My gynecologist is based at Hospiten in Estepona. He was wonderful throughout the pregnancy and had been concerned about me from the start. Anyway he carried out the c-section and a gorgeous but tiny Talia was born weighing 233 kilos and 45cm long. Although my other two kids were tiny too when first born ( 2.5kilos and 2.7 kilos), Talia just looked so much smaller with her ears all scrunched up.

The paediatrician their checked her through and she scored quite high on her Apgar tests.

Hospiten was great for comfort - nice private room that I was paid for me by my insurance company Sanitas (if interested can contact hamilton-insure.com). The only negative thing I can say is that the waiting times can be horrendous and when i went in for my c-section I was starved from the night before and didn´t end up in the op theatre till 15:00.

The only problem with delivering in Spain is that they are great at looking after you before and after pregnancy from a medical point of view but unlike the UK and Gibraltar, after you deliver, you are on your own. No one visits you at home, no one teaches you how to breast feed - they take your baby and bring baby back bathed (wonderful if you are a third time round mum like me but if a first time mum, you may like to be shown).

Anyway apart from the above Hospiten was great and after three nights there, I left hospital to stay at mum´s for a while as after the c-section the thought of going home with 3 girls, steps in the house and no garage space did not appeal to me. when I left Talia was only 2.1kilos.

Things were great. The Summer was fantastic. Loads of family came over and saw Talia - we were pretty relaxed with her - she was a good baby - she slept up to 5/6 hours a night and nursed really well - no sore nipples and she complained very little.