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!

This is a very bumpy ride

Well, Friday was a hair-raising day. Tália woke up and basically refused to eat her breakfast – now for those of you who know my little Tal, she may be slight but she does have quite an appetite and enjoys her food, ESPECIALLY breakfast. So if she refuses to eat at breakfast, something just aint right. Sure enough it wasn’t – at first I thought it was a tooth or that perhaps I had burned the roof of her mouth with some food ( to my horror!) but then she started coughing and her chest started making an awful rattling sound. In such a tiny baby, this can be quite alarming. Anyway since she had been chesty the last few weeks, I decided to stop feeding her, give her a break and then try again later So I packed my stuff and headed to Mum’s and Dad’s.

Once at my parents’ place, I sat Tália down and started to feed her – but she couldn't take anything –she refused solids and liquids and her chest seemed to be going from bad to worse. Her eyes were red and she just looked very uncomfortable. Mum, who is asthmatic told me that we should take Tália to the doctor just to check her chest. Her rattle and cough sounded like Bronchiolitis.

So by midday we were in the emergency room at Costa del Sol where they dealt with us quickly and efficiently. They gave Tali a chest x-ray and said she had mild bronchiolitis and also gave her a nebulizer. Then they admitted us to the hospital, not so much for the severity of the bronchiolitis but because Tália is too small to go without food (in fact to my dismay they weighed Táli and she had lost weight, she now weighs only 4.63 kilos) and they would need to feed her intravenously.

One look at the cold cot and our room and Tali crying and I knew we couldn't stay – I could see that hospitals made her agitated – although the staff and treatment she got this time was very good. The Dr on duty was a lovely lady and she agreed that if Tália agreed to take food, she should come home.

My brother, sister-in-law and baby arrived and together with mum and dad we tried to calm Tali and feed her. At first she cried but then I sat her up and told her loud and clear,

‘Look Tali – I hate hospitals too but if you don’t eat this, we have to stay here in this cold room – don’t you want to go home and be with your sisters and the whole family?´

Instantly she started to eat, we all sang and spoke to her gently and to my relief we were soon headed back to my parent’s house. My husband had collected the girls from school and we were all together. I felt a sense of security – these days Táli goes from up to down and having everyone around me just helps me feel safer.

This last weekend has been bittersweet – like a roller coaster. My brother and sister-in-law left for good on Monday. We all stayed at my parents´ home to be together for this final weekend – if I had had to stay in hospital, I would have been gutted. We had a fabulous weekend just hanging around together – so much laughter, dancing to ABBA, watching X factor and all pitching in. However Táli’s weakness on Friday left me very sensitive. Saying goodbye on Sunday was also quite a tough thing for me. My brother and sister-in-law have really been there for me. We spend so much time together and they would move mountains with me.

On Monday, my friend Susan came and worked with me from home – just having her company and friendship lifted my spirits. By Tuesday I felt my old self coming back and I went shopping with my parents – a bit of retail therapy and a cosy coffee out can really make one cheer up!!

Back to Physio

Well, Tali started back at physio yesterday and it felt great to be back. It was good to catch up with the physiotherapist who looks after Tália – she is so loving and gentle. She was impressed by Tália’s improvement although I explained that she was even stronger a few weeks ago – unfortunately her nasty cold really took its toll out on her.
However slowly but surely she is regaining her strength.

Yesterday we even did physio dancing (once I get myself sorted out, I’ll try and video a clip). Well she absolutely loves dancing and music and loves to watch her sisters, mum and gran prancing around. Its such good fun and so uplifting to see her giggling away.

Mum’s been teaching her where her nose and mouth are and yesterday we asked her where our noses were and she pointed at them. Her awareness seems to be improving – slowly but surely.

The best stimulation has to be books – her favourite book is 'The Very Hungry Caterpillar' and there is a section which says ´pop´ and every time I read that line out she laughs her head off.

Mitochondrial Awareness

I have been so touched by the Mitoaction website - they have provided me with so much support. There are no barriers to their giving - whether you live in the States or Spain, there is a group of people out there ready to help. For anyone with mitochondrial disease or suspected mitochondrial disease, I suggest that they become a member and view this video (see link above) or video at the bottom of the page.

Whether Tália does or does not have mitochondrial disease - my eyes have been opened by how many amazing people there are out there building a network for other families and patients. With Mitochondrial Awareness Week approaching, I hope to help spread the word to others out there for Mitochondrial Disease is often known as the invisible disease.

We see so much about war, disasters etc in the world yet we here so little about these amazing people who dedicate their lives to helping others. Whilst sad to see what people go through, the beauty is that people are really standing together. Mitoaction presents a positive way to live with disabilities. The positiveness is truly inspirational.

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!

Mamma Mía

Yesterday we decided to use the 20 euros the kids gave us towards a family day out - something that they would remember. So we headed out originally to go to the countryside and exploring but when we arrived at mum´s to get the older two girls who had spent the night there, Tália looked exhausted and off colour and ready for another sleep. So instead we left her with mum and took our two others out with us - instead of the country we decided to go to TGI's in Puerto Banus and then to see Mamma Mía.

We had a fantastic time- I am a real Abba fan and the movie really has a feel good factor about it. I felt like jumping up and dancing and wanted to laugh and cry with the characters. I suddenly realized how stressed I was as I felt my shoulders relax and enjoyed the escapism.

The girls adored the movie and we had a ball - I missed Tália but really felt I needed this time with my other two. Táli´s been unwell all week and I've been nursing her and praying and visualising whilst the other two have been with my in-law's and spending lots of time with my parents (which they love) - however I needed to share sometime with them especially as school starts on Tuesday.

I am going to see if there is a dance class or evening thing on that I can attend at night - I reckon that it would probably keep me feeling refreshed and stress free just to have some time to take down my hair!! With the responsibilty that I have, I guess I sometimes forget to be and have a laugh - don't get me wrong, nothing can be more fulfilling than being a mum to such special kids but perhaps I need to lighten up the air a bit?

Mum Saves the Day

Mum is back from Barcelona - hurray!! Its been a hard week for me. Tália has had a common cold yet because of her size and her wheeze, she feels so vulnerable. The skinny outline of her body sometimes sends fear rippling through my body, the rattling chest sounds so loud and ominous. Yet I know deep within that I need to change my specs - I need to see instead of skinny, a girl who at least is eating, instead of fear, I need to trust and surrender to the life force and I am trying, although sometimes I guess we try so hard.... Sometimes, one just needs a positive boost and that came from my parents and family yesterday.

I felt so tired - I guess it was mental exhaustion - trying to channel energy to my girls, maintaining a positive stance - yep I do need to work at it. There are days when you wake up a little down or frightened, usually days when Tali looks floppy and exhausted. However these are the days when I use positive affirmations to try and replace negative thoughts. Sometimes when too tired to train the mind, I find that making sure you are surrounded by positive people, landscapes etc can be extremely uplifting.

Well good news is, my older kids went to play with their cousin at my mother-in-laws and had a ball and mum and Dad came to give me that emotional support. Then in the evening my brother, wife and beloved Indy came too. We had all my immediate family at home - it was my husband's and my anniversary and the energy they all gave me helped me at a difficult time. Warmth and love are so healing.

My daughters also uplifted me - they gave my husband and I a very special anniversary present. Taken from her well-kept savings (which she never spends), my eldest daughter put into a homemade card 20 euros for 'you and Daddy to go out together and enjoy'. My youngest daughter said ' You and Dad need to decide where you want to go, its for you to spend time together'. What made me even happier was that although the money was my eldest daughter's, she said it was from her piggy bank and said it was from the two of them.

We have decided to use the 20 euros towards a family lunch out so that the girls can pay and we can celebrate together, once Tália is better. So the negativity has gone and not surprisingly, Tali looks better - her granny has a healing touch.

My Little Dolphin

A while back I said that I would put in some pictures of Tália awimming in her special sized minute rubber ring. Well here she is -my little Dolphin!

She absolutely adores the water. The independence it gives her is fantastic. She can float around alone without always having to be held.

Good Luck, Bad Luck, Who Knows?

Good Luck, Bad Luck, Who Knows?

That’s how I think of this day. If I had written this blog earlier on, it would have been filled with anger and frustration, concern and a sense of sadness at the humanity shown by people, but why?????

Here is an extract that I wrote earlier on:

‘What happened to humanity? Why do people let systems get in the way of healing? Why are we all fighting each other rather than heading towards one common goal?

Today has been frustrating and it is on days like this that I feel lost. The world has so many labels and boxes – what happens if we don’t fit into any of them? Today I awoke to a very coldy Tália with her streaming nose and chesty cough and choking away. I knew at once that this bleary eyed girl needed a decongestant but what do you give a 4.9 kilo child with suspected mito illness? A local paediatrician would not know her history and most Drs can’t cope with it without advanced notice, Materno Infantil just seemed too far, so finally we settled for Costa del Sol. Unfortunately my usual Dr was not there – he has shown nothing but empathy and support for us. Anyway I called the ward and spoke to the secretary and explained the problem. When no doctor called us and as Tália looked worse, we decided to head straight for the hospital and dropped the other two girls with my Dad. We went straight to the ward rather than emergencies as:

- Tália has no diagnosis but suspected mito disease means that flu’s and colds should be treated differently from that in a the normal patient
- A Couple of Drs there, at Costa del Sol, were aware that Tália had a skin biopsy and were aware of what they were looking for
- We could not risk seeing any general Dr on duty as Tália probably cannot cope with certain medication

Well, luckily a Dr saw us nearly immediately although explained that next time we should go to emergencies – I asked if we should go down and he said not to bother. He saw Tália and decided to give her some ventolin in a nebulizer.

It was whilst I was struggling with a screaming, crying Tália, coughing and choking, and trying to get the mask on her whilst my husband held her head still, that another nurse came in. I assumed that she was going to help me get the mask on but instead she just ignored Tali and ignored our distressed state and began to say that we were breaking the system, that we should have gone to emergencies, that we were taking up their room and resources etc. Tali was even more upset and the mask nearly poked her in the eyes. My husband asked the nurse if we could speak later and I said that I would like to explain to her why we had decided to go straight to the ward but she said she didn’t want to hear, that she was leaving and that she wouldn’t wait until I had finished. Tears welled in my eyes, I felt out of place, I felt unwanted and I couldn’t believe how insensitive a nurse could be. Surely seeing a mum so worried with an obviously tiny baby should spark compassion? Couldn’t her talk have waited? Did she have to have a go at us when we were focusing on her child?

She left the room as my husband got rid of her by telling her we knew the procedure and we wouldn’t come up again. Once she left, we gave up, switched off the nebulizer and walked out. I was crying. The nurses outside were surprised that we finished so quickly – we said that we were made to fell uncomfortable and unwelcome and walked straight out without looking back. They were shocked’.

Later on in the day, I spoke to my mum and she said that perhaps Tália didn’t need the ventolin – having been asthmatic, she explained that every time she had a high dose, she would shed weight. Also it would make her shaky – Tália didn’t need an asthma remedy but something to decongest her.

I came home and decided to look up some herbal remedies and my brother and sister-in-law surprised me by buying my Echinacea and driving all the way to drop them off. I received an email from the Dr in Barcelona who gave me the name of a decongestant to use – Mucorex.

So now I look back at my day and it no longer seems so bad – perhaps that nurse angered me enough to leave and stop the treatment. Maybe she was sent to stop me from giving Tália ventolin. Also Tália seems better. Now with a clearer head I ask myself was that nurse a stroke of bad luck, or was it good luck that she had a go at me? So, good luck, bad luck – who knows? All that I know is that I may not medically fit into any box but when I’m lost I have friends and family pooling together and ultimately that’s the best.