Brilliance at Brainwave..

Now I know I left you all on a cliff hanger with how it all went at our Brainwave assessment, quite like the Eastender’s drums at the end of an episode. The reason for this was I had so much to say, I didn’t want people getting bored and stopping reading before they got to the meaty part of our actual assessment. I really want people to know just how impressed we were with Brainwave. I suppose I could have just concentrated on the actual assessment, but you know me I love a good waffle and I always love reliving our fun family days out again.

So here we go then. Now where were we? Yes. We all went to bed for a good night’s sleep. We were awake a little earlier than expected, as Isabella decided at 5:30 that she no needed no more sleep and was ready to start the day! Thankfully the programme didn’t start until 9:30, where we began with Music Therapy. Now, music is something that Isabella loves. She has been to lots of music groups but never had a one on one session (other than with me of course) The therapist was very sensitive to Isabella’s needs and listened to Isabella when she had enough of a particular instrument, which was quite frequent throughout the half hour session! She certainly kept the Therapist on her toes, as she moved quickly from one instrument to the next. There was one instrument she was extremely interested in though, it was a large drum (the name escapes me) It was so big in fact she was able to sit on it! She found it funny when she felt the banging vibrations. Isabella has an obsession with trying to flip things over; Books, mirrors, trays (full of rice !) you name it she wants to flip them over. She was determined to flip the drum over and with help when she did she loved looking inside it!

After the music session we had a break in the family room, so we could grab a drink and a snack.  The idea of this was great, we could have easily gone back to our bungalow, but they had a sofa, toys and a kitchen area so we were all set up. Having said that I did have to nip back for a caffeine hit. After a 5:30 am start and the soft sounds of a flute being played I was ready for a Diet Coke and it wasn’t even 11:30 yet!

20 minutes later, all feed and watered we got to meet our two therapists Dawn and Mervin. The first part of the assessment was an informal chat where they got to know more about Isabella’s birth and  history. They asked lots of questions about Isabella’s development and what she was able to do. We were sat on a sofa with Isabella and it was all very relaxed. It didn’t feel like they were just asking for the sake of it, they asked with purpose and were genuinely interested. With this information they would plot a graph on where Isabella was developmentally.

Feeling relaxed and at ease we had another quick break before we moved into the physical aspect of the assessment. They took us to a brightly coloured room, where there was an array of special needs equipment and toys. The purpose of this was so they could see what Isabella was able to do and plan and develop a tailored programme that would bring her on.

Now they always say never work with animals and children, never truer words spoken. We put Isabella on the floor and she laid still, normally she would be rolling and moving around in her own unique way, but she was on to us! Now most children have a favourite toy that they respond to. Isabella is not really interested in toys, but she loves woggles. The simple coloured foam tubes that you take swimming. She cannot get enough of them, she loves rolling and moving towards them and grappling with them once she has reached them. For this reason we have them in an assortment of colours at home! So when we saw Isabella was not playing ball we upped the ante and asked them if they had any woggles, no sooner had we said this Dawn was out the door and by the pool. On her return with a blue woggle, Isabella’s eyes lit up. As soon as it was placed next to her she rolled right over to reach it – success!

They watched her play and roll around with the woggle. We explained that she was only able to roll to the left, and that she struggles with rolling to the right. We had been previously shown to help her roll by moving her right arm up. This was always tricky due to her tense muscles and the resistance they give when you lift them. Then and there we were shown another strategy, a far simpler strategy, we were shown how to bend her leg and facilitate rolling through her hip. It was easier, much easier, and Isabella rolled with ease within seconds. We were impressed, as was Isabella. They also noticed how she really enjoyed playing with the woggle and got out a long vibrating tube. Isabella took an instant shine to it, it was like the woggle only better it vibrated and was easier to manipulate.  I was ecstatic. Now you make think this strange, why was I so excited? Finding things that interest and hold Isabella’s attention is a tough job and watching her laughing in delight at this vibrating snake was worth it’s weight in gold. The strange thing was just the previous month I had googled long tubes, to see if there was anything on the market like the woggle geared towards sensory needs, maybe with tactile items hanging off it. Let’s just say that my choice of words was not the best, as the search results horrified me!!

During their time on the floor with Isabella they saw how she sat, rolled, laid on her tummy and how she moved her arms and legs. Isabella responded well to them and it was a real pleasure to watch. They talked to Isabella and us both, telling us the types of techniques she would benefit from. They wrote this down as they went along, as this would be their guide which they would tweak the following day. It was refreshing, as we had never had anyone spend so much time getting to know Isabella. It is not the fault of any of the professionals we see, but the time they spend with Isabella is limited and in some cases rushed as more often than not they are late from their previous appointments. Here it was different, Dawn and Mervin had no-one else to see, their focus for two days was Isabella.

They showed us different methods of sitting and kneeling, Isabella adapted quickly to side sitting and did it very well, high kneeling was more difficult and will take some getting used to. They also showed us ways of using equipment to help with the strengthening of her trunk and weight bearing, using wedges and a peanut shaped physio ball. They also expanded on techniques that we already do, by introducing equipment, for example we practice four point kneeling at home, but they introduced her kneeling over a roll. All throughout Isabella was very patient with them, towards the end however when it came to standing she became distressed, as it was nearing lunch time. So rather than push on and upset her further they stopped the assessment for lunch.

We headed back to the bungalow, where Isabella was so exhausted she fell asleep during her pudding. They had explained that if she was still asleep they would come to us to discuss her graph and plan, which again was very accommodating, as they were putting Isabella first, which after she was the reason we had come.

So nice and relaxed in our bungalow, with Isabella soundly, asleep they discussed the results. They were not a surprise, as we already knew that physically Isabella was functioning around the age of a six month old, but it was nice to see that like we feel, they agreed that cognitively she is closer to her chronological age. They went through Isabella’s programme. They explained that, like we thought Isabella is not aware of her body, in particular her arms and legs. So with lots of different techniques including body brushing Isabella will hopefully become more body aware, which will in turn help her refine her movements. Now this was lovely to hear as some of her professionals had written off her hands and the fact she is unable to hold objects. These professionals had made suggestions of using her head or mouth as alternatives to her hands! I told them straight that we were not giving up on her hands!

Some of the things in the programme we do already, they just gave us different suggestions. They tailored the programme to Isabella, it was typed out with simple instructions and would be accompanied by a DVD which would be filmed the following day. When Isabella woke we went for a hydrotherapy session and they were very impressed with how calm and at ease she was in the water. Exhausted we all went to sleep early that night.

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The following day we went through the programme step by step. We were shown twice how to perform the exercises and then were given the opportunity to do them also, to make sure we were confident. This meant Isabella was working 4 x times harder, but she was amazing throughout. Each exercise was filmed so we had a point of reference should we forget. After a very mentally (for us) and physically exhausting session for Isabella, we broke for lunch. This time Isabella didn’t sleep which surprised us all.

We resumed the session and were given the opportunity throughout to ask any questions. Their way of working was different to anything we had seem on the NHS. They use a ‘holistic’ approach, they take into consideration all approaches. So where by trade they were Physios, they also knew approaches that Occupational Therapists and  Speech and Language therapists use. I remember having lots of questions when we first met the Physio, but she was unable to answer them as it wasn’t her department.

As a rewarding end to the day Isabella and I went in for another Hydrotherapy session, which she loved, this however did wipe her out and as lovely as the Sensory Room we went to after was, she sadly wasn’t bothered.

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So after a busy two days we began our journey home;  Armed with a folder containing her new programme,  a date booked in November for her reassessment, a car full of equipment and lots of hope for dramatic improvements.

Ten minutes into the journey Isabella was wiped out…

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If any of you are considering trying alternative therapies please consider Brainwave, although not cheap it is worth every penny.

http://www.brainwave.org.uk/

 

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Life’s a Beach…

It is a known fact that everyone wants to do the best for their children. Parents want to be able to provide the best that they possibly can for their child. Parents of disabled children are no different, in fact they are always looking at different ways in which they can help their children reach their potential, by looking into different equipment, alternative therapies and methods. Paul and I are no different. Several Mums on SWAN posted about their experience at Brainwave.

Brainwave is a charity that has been running for 30 years and their slogan is ‘Unlocking Children’s Potential.’ The slogan itself had engaged our interest immediately. The Brainwave Programme rests on the theory of neuroplasticity.          

Neuroplasticity : the capacity of neurons and neural networks in the brain to change their connections and behaviour in response to new information, sensory stimulation, development, damage, or dysfunction. 

Neuroplasticity, another long medical term that we could add to the ever-growing list of words that we had heard and tried to digest. Medical science aside it was the rave reviews SWAN mums were giving it that led us to filling in an application. The posts and blogs we had read were all exciting and inspiring, we felt that we didn’t have anything to lose. So without a second thought we applied online.

From research and the feedback from other Mums we soon learnt that the staff at Brainwave were qualified and experienced in physiotherapy, psychology and education. Now Isabella, as you well know has an NHS Physiotherapist that visits once every six weeks, for a short 45 minute session. From the exercises we learnt, we had a daily exercise plan in place, which included sitting and standing practice, but we were open to new ideas, and were interested in learning different ways of moving Isabella forward.

Not long after submitting the brief online application we received a telephone call from one of our therapists. The lady on the other end of the phone was very lovely, we soon learnt that any interaction with the rest of staff at Brainwave would be the same.  She asked lots of questions about Isabella and her condition and really took a genuine interest. This can may a real difference when you are telling the same story for the umpteenth time. This was back in March and we were told due to the popularity of the place, our assessment wouldn’t take place until September, we said however, that we would be available for any last-minute cancellations.

As luck would have it, someone did cancel and we were pushed up to the 21st May. We were both so very excited. To add to the excitement the week before we were due to visit one our the SWANS that had visited just a few weeks previous had learnt to sit unaided! Tuesday 21st May for us now just couldn’t come quick enough.

It just so happened that the visit to Brainwave coincided with night out for me (a real rarity) It was double drink celebrations that night out; as I had been out wedding shopping with my Best Friend and seen her in her beautiful wedding dress, as well as choosing Isabella’s Flower girl dress and was also very excited for our impending trip to Brainwave.

So en route to the Brainwave Centre in Bridgwater, Monkey and Daddy picked a slightly tired and fuzzy Mummy up. With a brief stop first at MacDonald’s first to allow Mummy to refuel, we arrived at our accommodation. For just £50 a night you can stay on site at Brainwave, in a fully equipped bungalow. It was perfect, they provided a cot, a highchair and a bath seat. It was two bedroomed, so it meant we could relax in the evening and put Isabella to bed without disturbing her when we went later that night. I say later it wasn’t much later, as I was desperate to sleep as I hadn’t gone to bed until 3:30 am that morning!

After a good night’s sleep, in fact a full night for me as Isabella slept through, we all woke feeling fresh as daisies.  We decided to take the opportunity to make the most of our family family day together, as it isn’t often that Daddy is off in the week (well except for hospital appointments) and the assessment wasn’t due to start until the following day. We headed off in the direction of the beach, stopping briefly at St Audries Park, my best friend’s stunning wedding location.

Everything thing was perfect. Our little family was together and we were all very happy. It felt like we were on holiday, it really was lovely. We also stopped at Williton, just 5 minutes away from St Audries, where we saw a real steam train. Isabella was very excited by the noise it made. We did some research and found that they do special Father Christmas train rides in the winter. So depending on the soreness of heads after the wedding Mummy and Daddy may or may not be joining Isabella and Nuna & Pops on board the train, as it is very, very loud!

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We continued our drive to the seaside resort of Minehead where we enjoyed a pub lunch, collected shells on the beach and made very bad attempts at flying a kite. Unlike the song in Mary Poppins, we most certainly didn’t send it up to the highest height nor did we send it soaring, nevertheless we had lots of fun trying.

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After a day of fun we got back to our Bungalow and gave Isabella her dinner. Afterwards we met up with another SWAN family, who I had never met but had chatted to on the group. It was a real added bonus getting to meet up with another family. Meeting other families is always nice, as we can share stories knowing that they completely understand where you are coming from. It was lovely seeing the girls together and finally meeting in person. It was refreshing to see that we also had more in common than just our children. Sadly we couldn’t stay long too long as the sea air had really wiped Isabella out. So we all got an early night in preparation for our big day tomorrow…

Passionate about Polymicrogyria…

Isabella as you know was diagnosed with Polymicrogyria in December. Since that time I have been trying  to find out as much as I can about it. This has been a struggle since there is very little in the way of information out there.

As I found such great support from the SWAN UK Facebook group, I searched for groups on Polymicrogyria. I came across 4 international groups. These groups while very friendly, were large and had people from all over the world. I found myself getting lost on the sheer volume of traffic in some of the groups. I wanted to speak to parents from the UK, so like SWAN I could get in  touch and meet up with people local to me. So I asked about on the other groups if other Mums would be happy to join a group that was just specifically for the UK and Ireland. I was mindful of upsetting the other groups and stressed that the new group would merely be an addition to the others. Another Mum contacted me and said that she was interested in helping. So together we set up the group. We called it Polymicrogyria Family Support UK and Ireland.

Not long after we set up the Facebook group, Suzi and I got chatting and realised we both wanted the same thing – more awareness for Polymicrogyria in the UK and Ireland. As I said there is very little in the way of support and information out there, even the teams that work with our children know very little about PMG. So we decided that together we would set up a website. We wanted the website to give people more information about PMG and also lead families to our friendly Facebook group which was starting to grow nicely. We then thought about starting a charity, one that was for families that were affected by PMG. This along with the website became the focus of our attention.

It then became a daily chat on text or Facebook on the designing of the logo for the charity. Choosing the colour was relatively easy. We wanted to stand out from other charities and move away from the many pinks and blues that are out there. Purple is the colour associated with epilepsy, which is something that affects a lot of sufferers of PMG. We felt it was important to keep the full name of Polymicrogyria in the title rather than using the shortened PMG . We liked the name that we were already using for our Facebook group as like Ronseal it does what it says on the tin.

The Charity is all about raising awareness and supporting those families affected by Polymicrogyria. We felt that charity should have  a friendly mascot and after batting ideas to and fro we decided on ‘Stars’, as that is what we feel our children are. There are three stars, ‘Poly’, ‘Micro’ and ‘Gyria’. We wanted the slogan to be short and catchy -‘Give hope to a Star’. The future with anyone suffering with PMG is unknown but the strength and determination they show is inspirational, by people supporting the charity they are giving hope to our ‘Stars.’

 

My Husband Paul is in the RAF and only a few days after we launched the charity he had a dinner night which raised £212. This was a simple way to raise money, with merely a bucket and logo on and a brief intro about the charity, over £200 was raised. Imagine what we can achieve on a bigger scale with more preparation and organisation.  His work place has now also said that ‘Polymicrogyria Family Support’, will be the official charity for any future fundraising events, which is simply amazing.

Whilst we are putting the finishing touches to the website, we have set up a Facebook Page that people can like.  This will be the place to raise awareness on Polymicrogyria and our charity, as well as future fundraising events. Now it is up and running, if you haven’t done so already, can you please share it on your profiles and ask your friends to do the same.

It is an amazing feeling setting something with your loved ones as inspiration. I honestly have a great feeling about it all. We already have 219 likes which is fabulous, but I know we can achieve more. Already we have informed one Mum, who had never heard of PMG before and thinks her Daughter may have it and she will be talking to her daughter’s specialists. This is the aim of the charity is, to reach people and spread awareness and hopefully find some more people who could benefit from our private FB page.

We will in the near future be selling wristbands and organising Fundraising events. So watch this space. So for now if I could ask you again to like the FB page and post it on your profile asking your friends and family to do the same xx

https://www.facebook.com/PolymicrogyriaFamilySupport?fref=ts

 

THANKS AS ALWAYS for your support 🙂

 

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Out to sea..

Yesterday was Isabella’s 3rd birthday. It took us both by surprise. People say that time flies when you have kids and I have to say I wholly agree. In fact I would say it is un understatement.  It doesn’t just fly by it goes by at super sonic speed.  Blink and you have missed it.

Our three years with Isabella have been slightly different than expected.  Who’d have known that Isabella being born without any complications and who ticked the right boxes in the new born tests, on reaching her third birthday wouldn’t be unable to talk or walk.

As a family over the last three years we have come a long way and Isabella has made some truly amazing progress. However, as time has gone on the gap has really started to widen.

I always tend to use analogies to describe our lives and how we feel. It makes it easier for me to explain and others to understand. So whilst out walking another analogy sprang to mind.

When Isabella was born we were living on the mainland with everybody else. Then as the months went on and I became increasingly worried about Isabella and her development a line appeared between us and the mainland. Like a border between countries, where eventhough they are next to each other, life between these two countries can be very different.

Isabella wasn’t sitting unaided, playing with her toys like the children around her. People noticed and asked about her development.’ Oh, is she not sitting yet?’ They would ask. I didn’t have any answers. We were still waiting to see someone, someone who hopefully would have them. Apart from my parents we hadn’t told anyone about MY worries and concerns. The fact I had pushed the GP for a referral to see a paediatrician.  So I would reply, ‘Not quite yet, we are getting there’. When actually in truth she had appeared to get worse constantly flopping forwards or back.

So in the early days I would bat away awkward questions or simply avoid situations where they would come up altogether.  Not because I was embarrassed,  because I didn’t have any answers and didn’t know what to say.

I tortured myself with child development books and would recieve daily e mails on what my baby ‘should’ be doing. I would spend hours on Google.  It was actually Google where I self diagnosed her Cerebral Palsy.  My husband didn’t want to hear. He truly believed there was nothing wrong and that the long awaited appointment with the paediatrician would prove him right. He thought he would say she was behind and would just ‘catch up’.  So sure in fact when we finally got the appointment he couldn’t make it due to his first day in a brand new job.

So when the paediatrician agreed wirh me and said it was probable Cerebral Palsy my husband’s world was shattered and he was racked with guilt for not coming with us. It was hard trying to stop his guilt,  as he had nothing to feel guilty about. As a mum I just knew someting was wrong and hated myself for being right.

Now that someone had confirmed my darkest fears and we began to tell people, I slowly felt the land around us give way and crumble. We had started to detach from the mainland. Our family was now on an island on our own. We were no longer joined to the mainland.

As time went on we seemed to drift out further to sea the gap between us and the mainland widening. Our little island inhabited by a few of us including Isabella’s specialists.

Other visitors to the island became less frequent.  Maybe because visitors felt our island was more boring and mundane.With less spontaneity and more routines in place. Whatever the reasons we floated further and further away.

We obviously view our island differently. It is not boring and mundane. In fact it is quite a magical island with rare birds and butterflies and for the most part the weather is good.

But i have to say that there are some people who saw the cracks and felt it crumbling away and stayed with us on the island. They have been with us drifting along and watched the mainland fade into the distance.  Like us they like life on the island.

We have people who will occasionally take a boat out to visit, but they don’t stay long. They find the island uncomfortable, different and prefer life on the mainland. On the odd occasion people from the mainland will wave, but it is getting harder to see them now, they are little dots on the horizon.

Although we maybe on our relatively small and sparsely inhabited island in the middle of the sea we are not alone. We are surrounded by other beautiful, tropical islands. We are all drifting out into an unknown sea, but we are all drifting together…

 

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‘The Undiagnosed’ – In Memory of ‘Beatrice’ and ‘Harry’…

So tomorrow is our very first ‘Undiagnosed Children’s Awareness Day.’ While all the talk and posting on Face Book and Twitter has been amazing, as it means the word is getting out. It has made me think there may some people who will find tomorrow difficult.

Beautiful ‘Beatrice’ sadly passed away last year and very recently we lost the gorgeous ‘Harry’. I wanted to write a poem for tommorow to celebrate our SWANS, but I wanted Beatrice and Harry’s friends and family to know that their beautiful children’s memories will live on forever in our hearts. So ‘Beatrice’ and ‘Harry’, I dedicate this poem to you both.

Today is the day,

Where we spread the word,

Where ‘Undiagnosed’ Voices,

Need to be heard,

 

They shouldn’t need a label,

Or their condition a name,

For our children to be,

Treated exactly the same,

 

Being ‘Undiagnosed’ you live,

In world of unknown,

No answers to questions,

You feel so alone,

 

Why do we have to,

Plead and fight,

To get what they need,

It’s just not right,

 

The playing field should be even,

All rules should be set,

A diagnosis shouldn’t determine,

The help that they get,

 

We often feel deflated,

Down trodden and beat,

Things only accomplished,

When we turn up the heat,

 

Our children are an inspiration,

So determined and strong,

But we are made to feel,

Like they don’t ‘belong’,

 

So today is our day,

We will take our cue,

To stand as one united,

Wearing pink and blue,

 

Let’s hope today raises interest,

On conditions so rare,

The ‘Undiagnosed’ not invisible,

And the world more aware,

 

But as much as this is,

a great day to rejoice,

As our ‘Undiagnosed’

Finally now have a voice,

 

We mustn’t forget those,

Who sadly have passed,

Theirs lives too short,

But their memories held fast,

 

To ‘Beatrice’ and ‘Harry’,

And all those before.

May your memories live on,

Forever More.

 

By Tracey Gardiner

 

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‘Undiagnosed Children’s Awareness Day’ ~ April 13th 2013

Saturday will be a big day for SWAN UK and SWAN International and all of it’s members. It is the first time that we will have a day dedicated to our Undiagnosed Children. Over the last year through Fundraising, blog posts, and a massive push to spread awareness, people are slowly beginning to recognise the term SWAN and starting to understand that thousands of children around the world are living without a diagnosis.

It is really important for Saturday to be a real success to spread the word even further. So once again folks I am asking you for your help. How can you help you may ask? Here are some of the ways you can help spread awareness….

1. Wear ‘pink’ or ‘blue’ this Saturday 13th April

2. Take photos of you wearing ‘pink’ or ‘blue’ and upload them to your FB/Twitter page with a caption explaining the significance of the photo and ask your friends to share it.

3. Change your FB and/or Twitter profile photos to show the ‘Undiagnosed Children’s Awareness Day’ Banner and ask your friends to do the same.

4. If you don’t already, like the SWAN UK FB page and ask your friends to do the same.

5. If you are a fellow blogger, please re blog this and/or yesterday’s post

6. If you a fellow tweeter please tweet about ‘Undiagnosed Children’s Awareness Day’

7. Tell everyone you know about it!

Thanking you all in advance…here’s hoping it will be a massive success.

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Down in the jungle….

From the moment I knew that things weren’t quite right with Isabella until the day we sat nervously in the Pediatrician’s office, we were living in the dark. Then even after that eventful day we went from being in the dark, to being thrown into the unknown.

So there we were in the unknown. Although we finally had people on our side and we had a group of specialists enlisted to try to help Isabella, we still felt very much alone. It felt like we were lost in the jungle. This is actually where the title of my blog came from. The idea that we were ‘Down in the Jungle, where nobody goes..’ Like the nursery rhyme. Monkey is what we call Isabella. So we were ‘Down in the Jungle with Monkey’.

The Oxford Dictionary definition of Jungle :

1. an area of land overgrown with dense forest and tangled vegetation, typically in the tropics

2. wild tangled mass of vegetation or other thing

3. situation or place of bewildering complexity or brutal competitiveness

These definitions couldn’t be more true of our lives. We were stuck in a jungle. We were in this dense forest where we hit tree after tree and didn’t know where we were going and people didn’t know how to help us. We encountered the tangled vegetation of paper work, appointments, hospital visits, tests and phone calls. Suffered the heat of the tropics too, with temperatures rising and blood boiling, when people let us down and kept us waiting. Our once straight forward family life had taken a turn and the road was no longer straight and we could no longer see where we were going. We were most certainly in a place of ‘bewildering complexity’. Forget the wood, we couldn’t see anything beyond those bloody trees.

Then we came to a small clearing where we found another family like us lost in the jungle. They too had a child, a little older than Isabella but just as gorgeous and just as puzzling to the medical profession. It was nice as we no longer were alone. So we continued wading through the jungle, feeling better about having some much-needed company, the jungle can be a very lonely place.

On we trekked and waded through the jungle helping each other negotiate some of the really tangled vegetation. Then we came to a huge clearing and we discovered more families here, about 100 or so, all lost in the jungle also. The difference was they had set up a temporary camp. It was somewhere people could go back to, when the heat and the vegetation all got too much. A few families had ventured out much further into the jungle, as their journey had started earlier. They were able to give advice on how best to navigate around certain trees and particularly tangled masses of vegetation.

Our new companions very quickly became our new family. We decided to stay with them at base camp. We often sit around the camp fire and share our experiences of the jungle. Our highs and our lows. We celebrate our children’s achievements. We also offer each other care and support when we have been bitten by some of the nasty bugs that live in the jungle or had a nasty bump on the head from tripping over tree roots. Some of us have suffered from heat exhaustation and felt like quitting and leaving the jungle but a natter and some TLC around the camp fire helps us feel strong again, to face another day in the jungle.

Now that we have found a base and a new family, it makes the jungle all the more bearable. We now see the beauty of the jungle, the butterflies, the birds singing and the sunshine peeking through the tops of the trees. We still have to battle through the dense vegetation, but it is nice knowing we are not doing it alone.

The base camp has grown rapidly in the last year, quadrupling in size. We tend to have lots of small camp fires burning now, as it is hard to hear everyone sitting around a large one, but we all know we are there, looking out for one another.

This Saturday 13th April is ‘Undiagnosed Children’s Awareness Day’. Thousands of children in the UK, Ireland and around the world have severe developmental delays that are undiagnosed. Without a diagnosis families often experience difficulties in accessing help and support from various services including, health, educational and social services. They become lost in the jungle. Although we have ‘one’ diagnosis for Isabella there is still more to her condition that remains undiagnosed. We still have a lot more of the jungle to trek through and our unknown journey is still continuing.

There may be other families lost in the jungle and needing to find ‘SWAN’ Base Camp. Please on Saturday could I ask you to wear ‘pink’ or ‘blue’ to raise awareness for those thousands of children around the world living without a diagnosis. I am glad we found Base Camp and a new family and hope that any lost families in the jungle find us very soon…..

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A year on…

I cannot believe it is a exactly a year to the day that I started my blog and opened up my heart and shared our journey with our amazing and beautiful Daughter Isabella. A year. 365 days. It seems almost ridiculous that so much time has passed us by so quickly, but what a year it has been.

I started the blog initially, as a way of expressing my thoughts and in some cases venting. In fact looking back my first few posts do seem quite negative! But writing them really was (and is) like therapy for me. Once I had cleared out the clutter of negative thoughts and experiences, I was able to share other happy experiences and talk about the importance of family and friends. That is not to say I haven’t written any negative posts since, and sadly I think there will always be the odd few more often than not, depending on particular situations that we find ourselves in.

Once I had written a couple of posts I was addicted, it felt so good, so therapeutic, sorting and arranging my thoughts. Sifting through the good experiences and the bad. To start with my love affair with my blog was constant and regular. My blog was my companion while my husband was away. It was also his companion, as he had time to read through my thoughts and digest the information in his own time, without me babbling or shouting ( I am loud on Skype) and him constantly asking me to repeat myself, due to the connection on Skype being so poor. When my husband finally came home after four months away, inevitably the love affair became less frequent, as I now had my ‘other’ companion.

Whilst pregnant with Isabella I had written a blog from Isabella’s perspective inside my tummy. The blog although on the internet was not particularly publicised and was only read and followed by my family and close friends. This blog however has been different and taken on a life of its own. To start with my only followers were again my family and close friends. Then my new-found fellow SWAN Mummies began to follow me and then through the power of Facebook and Twitter the numbers slowly grew. It is strange to think that people in different corners of the world are reading about our special little girl and our journey through the unknown.

I know some people may think it is strange that I have my life with my Daughter on the internet and had you asked me a few years ago about sharing my life on the internet I would have laughed at you and thought you were mad. For all its negatives and downsides, such as internet trolls and cyber bullying the internet has proved it can be positive and make an impact. Over the last year my blog (and others like it) has raised the awareness of SWAN and children with undiagnosed medical conditions. It has made strangers and people I know understand a bit more of what life is like with a child with disabilities. It has made people understand that things aren’t always what they seem. It has made people realise that how they act and behave in certain situations (intentional or not) can have a devastating impact on other people.

I am not saying my blog has reached the masses by any means, but it has reached a few people and made them understand a bit more and in turn tell other people. Through my blog I have also had people interested in raising money for SWAN and interested in the classes that Isabella goes to.

When I go to classes with Isabella, I always tell the class teacher to share my blog via e-mail so that people who feel uncomfortable in asking questions can understand more about Isabella and her difficulties. It also means that I am not bombarding strangers with a long, shortened version of Isabella’s journey. My blog acts as my voice.

In the last year Monkey’s journey through the jungle has been a long one. When I started the blog Isabella was undiagnosed and I had only just discovered SWAN. Now Isabella has her diagnosis of Polymicrogyria and quite frankly I couldn’t imagine my life without the support of SWAN and more recently my fellow Polymicrogyria (PMG) Parents.

We have also completed a sponsored swim in aid of SWAN and been interviewed twice on BBC local radio and appeared in the local newspaper.

We have been to hospital on several occasions for several appointments including;two eye tests, two EEGs, an MRI Scan and had bloods taken. As well as a check up with the Pediatrician, a genetics appointment and Neurologist appointments, including a referral to Great Ormond Street, where we were knocked for six with an unexpected diagnosis.

So a year on and my amazing Daughter has continued to inspire me with her strength, strong will and determination. She has dealt with all that has been thrown at her. She isn’t walking yet, but she is now weight-bearing, which a year ago was something she wasn’t able to do. Isabella is the reason for my blog and the reason I stand up, fight and speak up for her. She is my world. My amazing little girl, my special little ‘Monkey.’ xx

Good Night Sweetheart….

“Good Night Sweetheart well it’s time to go,

I hate to leave you but I really must go,

Good Night Sweetheart, Good Night.”

When I hear that song it always makes me think of the film Three Men a Little Lady. I love the way they place her in her cot and all three men look lovingly at her, as she lies there peacefully and blissfully asleep.

I absolutely love putting Isabella to bed and it isn’t because Isabella has driven me mad all day and I need a break. It is because at night, in the quiet moments in the dark, as she slowly sucks on her bottle and is falling asleep, she is in finally in control of her body.

You see in the day, Isabella’s body controls her. It is like she is trapped at times in her own body. She has her involuntary hand movement with her right hand, where 3 – 4 times a minute it rises up in the air distracting her from what ever activity she may be doing. For example if she is sitting (which she can manage very briefly for a few seconds) once her hand goes up she topples forward, as she no longer has the hand she was propping on for support.

Then there is her right hand which she bites when excited or frustrated. The only way to describe is, like she has been wired up wrong, so whenever she laughs, is happy or excited she bites her hand. It is hard as a parent to watch your child bite her hand and see her make it sore. She doesn’t draw blood, but it is red and sore looking nevertheless. She doesn’t cry it is just her very unusual way of expressing emotion, but one of the many things I would like her not to do. As a parent it is extremely difficult, as you don’t want your child to bite her hand, but something as simple and as loving as kissing her makes her do it. The more happy and excited she gets, the more frequently she bites and the same goes for when she is frustrated.

To add to this she has hypertonia in her arms. Hypertonia means high muscle tone. The high muscle tone in her arms means there is too much tension in the muscles at rest. The muscles are tight and tense even though they are not doing anything.

Her legs have variable tone, sometimes they are tight at other times they are floppy, but for the most part like her arms they are very tight. Her toes are usually curled and tense also. Throw into the mix an unexpected noise and her body borders on rigour mortis.

So you can imagine how nice it feels for Isabella (and me) when her arms are relaxed at bed time and no longer tense. Her legs laying gently over mine, not a tense muscle in sight, listening to her lullaby softly playing with her hand gently stroking my face, sucking gently on her bottle, with no involuntary hand movements or hand biting in sight.

Before she finally nods off she snuggles in close for a special bed time cuddle, head cwtched in close under mine, hands on my neck and face. Now I am able to give her lots of gentle kisses and cuddle her relaxed body. Like the song says, I hate to leave her as, I love this time of the day where she is relaxed and at peace. I lay her gentle body down in the cot and watch her sleep peacefully and blissfully….Mummy’s little Sweet Heart x

Everchanging times..

I think most people live their lives with the mindset and attitude of ‘That will never happen to me.’ I know that I did. It was not a deliberate way of thinking, it was the way I was. Nothing phased me or scared me. I guess it was an age thing too. I had seen things on the news and read about things in newspapers; sad stories about people dying in car accidents or having life threatening illnesses and conditions. These stories touched me and made me feel sad but they never worried me.

I was like most young people happy, worry and care free. I left home at 20 to become a Holiday Rep. During which time; I drank more than I ate. What I did eat would horrify any Dietician. I partied more than I slept. The sleep that I did get was usually was fully clothed in the previous nights attire or on the beach caked in tanning oil. On nights out I tottered around on 4 inch heels that crippled my feet and when the pain became all too much I removed them and would stomp around outside barefoot. I speedily rode my moped more times with my helmet off than on. When I did walk I would always hastily cross the road on red. I did all of this without a worry and a care in the world. It was fun. I didn’t see any danger.

Fast forward 12 years and I am Mother and suddenly I see danger. I see pontential danger everywhere. I am Mother who gave birth to a beautiful baby girl without any complications. I am a Mother who never once thought that the beautiful child I had would be severley disabled. So now I have tilted my view of the world slightly. I no longer think, that won’t happen to me or us as a family, because it might. That is not to say I am now a real pessimist and view everything as the glass half empty, as that is definitely not the case. I now just air on the side of caution and opt for the safer option.

I still party, just not every night! I am lucky if it is once a month! My sleep is no longer governed by me, my little monkey decides how much sleep she feels Mummy needs and for the most part it is a bit more than I used to get!

I try to eat more healthier, but think ‘Everything in Moderation’ is generally a good rule to live by. I no longer use tanning oil, instead lather myself up in Isabella’s 50+ sun screen! I no longer sun bathe, we just take strolls in the sunshine. If I feel I need to add a bit of colour to my life I will now fake it rather than going to a Sun Bed.

I most definitely no longer ride a moped and I am extremely careful in the car now that I have finally learnt to drive, with all speed restrictions adhered to.  I cross the road with extreme caution and never cross until I see the Green Man.

As a parent you have to change and see potentials dangers that are around you and your child. I have to choose the safer options to protect my family. To some the idea of no longer sun bathing or going out in the sun with 50+ protection sounds extreme, but thousands of people a year are diagnosed with skin cancer and I cannot afford to take such a risk.

My first thought now is no longer me it is Isabella and my family, so if something doesn’t look safe or isn’t quite right I/we avoid it. It may mean taking a little long to get somewhere, as we wait patiently for the Green Man or drive safely rather than speedily, but Isabella’s safety is our concern and my family’s safety is my concern. It chills me to the bone when I think about families that lose their child or a child that loses their parents.

It really is strange how things that happen in your life can change your view or outlook for the future. I know that the bronzed Crazy Tracey the Holiday Rep tearing around on her moped, hair flying wildly in the breeze, can of Red Bull in her bag, planning her night out in her head, with a raging hangover and only two hours sleep would never have thought that she would become so sensible. Well not THAT sensible, as I on my nights when I do party I still do totter round in 4 inch heels and yes admit to having to take my shoes off when the pain becomes too much, which I may add is much, much sooner than it used to be! Then more often than not I have been known to go to bed fully clothed like the old days, waking up looking like the newest member of Kiss! Some things NEVER change…