Onwards & Upwards 😀

Well hello! I Haven’t blogged for over six months. 
Haven’t had the time. 
Time…… something I’m almost always late for. This isn’t a New thing. Happened when I was a teen. I’ve got better though. Never more than half hour late….. mostly!! 


But ALL of my time is being taken up caring for and being a mummy to my little toddler ( I say toddler in the loosest of phrases ) as that’s exactly what Dylan is trying to do. 


My 7 year old baby is turning into the funniest, cutest, most loving incredible little toddler. The little boy stuck in the mind and body of a baby is starting to develop ever so slowly, but ever so…….


Dylan by rights should be in Year 3 ‘Juniors’ but instead I’m still continuing to home educate my pre-school aged little boy. 


Dylan’s developed the most wonderful character. He’s oh so funny makes us laugh 24 hours a day ( sleeping is still not very high on his priority list 😴 ) He’s into everything now, he’s even found a love for Peppa Pig and does the cutest little snort when watching her. He picks Peppa up along with the remote and that’s him verbalising what he wants to do. 


He plays with his toys (I say plays. He does a lot of throwing and squashes a lot of potato waffles over his toys, toys like to eat you know!) 

For a non-verbal child he makes a hell of a lot of sounds and communicates by using ‘ ‘Dylan-aton’ (Makaton is far too common 😂) 


McDonald’s, Fruitshoot, sweets and choc (dairy free of course) have all got their own signs. Dylan invented them all and they’re fab. 

Both his Nana’s have their own names. Nana S is Nana Mum (he’s picked that one up from me calling her) and Nana F is Nana Bum Bum (no words!) 

Grandpas Taxi ride to McDonald’s has its own sign but I couldn’t even type what he does. We just know. 
As for Papa, Dylan mimics the funny noise he makes down the phone. So everyone has their own ‘new’ identity. 
The absolute love of Dylan’s life is his big sister Gaga, whom he sits at the front door whilst she’s at school desperate for her to be home. 

Eeeeeeeeeeee (Daddy) gets the credit for clearing up sick. Dylan’s MTX chemotherapy injections make him sick and he continues to tell me daddy clears it up (even though it was me!) Dylan jumps all over Daddy when he gets home wanting to play. 

As for me, Dylan’s learnt to climb on my lap, rest his head on my shoulder and give me a ‘Dylan Cuddle’ I’ve waited over 7 years for this and I happily stop dead to cooperate as these cuddles make me the happiest proudest mummy ever. Oh and when he blows a kiss too, I’m in heaven. 

He’s a quirky little character, loves playing ‘I see’ and literally hits himself in the face covering his eyes. Loves (trying) to do head stands (this worry’s the life out of me as he is so fragile) He points (well pokes, scratches and basically hurts) to my face parts as we learn the eyes, nose mouth etc. But no. Dylan prefers the neck. (Have you ever been pinched on the neck by a small 7 year old. Ouch!) Giggles when he try’s to do the conga, pulling on the back of my top singing La la la. 


He will only drink out of a new orange fruit shoot, has to be Asda teeth and lips and now loves a fish finger. Absolutely loves a shopping trolley and a credit card (don’t know who he takes after??) 


He lay on the floor with his head down if he’s had a seizure and gives a little cry to tell me if he’s in pain. Points to the top of his leg each evening before we inject his Anakinra and goes over to the chair when it’s time for his immunoglobulin infusions. But when it’s time for his chemotherapy he knows this makes him sick and does the sound effect to go with it. 


Honestly the list goes on of how funny our handsome little man is. Our teeny little boy who has the rarest of undiagnosed condition, doctors didn’t think would make past 5 months old, wouldn’t walk let alone sit up. Continues to amaze and inspire me daily. He lights up our lives and we wouldn’t change him for the world. He’s taught us to laugh again and to cherish every single day we have with him. 


It’s Dylan’s Story & he writes the chapters. No one is invincible, every day is a gift to each and everyone of us. Live. Love. Laugh 💙


Please follow Dylan’s Story on Facebook 

Dylan’s Story in connection with the Tree of Hope charity are in our second year of fundraising to build Dylan a safe and sterile sensory room he deserves. To donate Click here

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Knowledge is Power #undiagnosed #UCD #dylansstory

Before Dylan, a SWAN was a large aquatic bird. I had never heard of a genetic syndrome as being undiagnosed. Before finding SWAN UK (Syndrome without a name)


I’ve since found out a SWAN looks like this! (& remarkably can drive a car!!)


I had absolutely no idea we were not alone. 6000 children are born in the UK every year with a genetic condition that cannot be diagnosed because it is so rare. As a parent of a SWAN, life can seem lonely and you can feel isolated, forever seeking answers to endless questions.

In order to raise awareness for the many children, like Dylan, who are living with an undiagnosed syndrome, I decided to take ‘Dylan’s Story’ public. Undiagnosed Children’s Day (UCD) is huge annual event so we rely on as much media coverage as possible to raise awareness. In 2015 ITV News were looking for an undiagnosed child at GOSH and Dylan was selected to feature in their following day’s programme whilst having his Heart Echo. Blink and you’d miss us. Hours of filming and numerous interviews condensed into ten seconds. I was so proud to have been part of UCD and for introducing Dylan to the world.

Later that week, prior to UCD15, Lauren Roberts (National Coordinator, SWAN UK) published a post on social media searching for a family to share their story live on the BBc’s Victoria Derbyshire Show the very next morning. Without hesitation I volunteered. Quick DIY spray tan, sleep in rollers and, voila, we were ready for our 6am pick up. Traffic was horrendous as we nipped in and out of bus lanes in the taxi. We arrived with only seconds to spare, whisked into hair and makeup, had a very brief introduction to Victoria, then we were live on her sofa. I hadn’t rehearsed; it all just came from the heart. Being interviewed about living with an undiagnosed child could be my subject on Mastermind.


Knowing people were watching and receiving their support encouraged me to continue raising awareness. ‘Dylan’s Story’ was born.


As a result of my subsequent blog and Dylan’s Social Media, I was contacted by journalists wanting me to share our story. We appeared in several publications including; the Radio Times, What’s on TV, Channel 5 News, local newspapers (Brentwood Gazette and Epping Forest Guardian),


Articles for GOSH (Patient, Donors and Staff) Magazines,


We featured (stared 🌟 haha!) on BBC’s DIY SOS for GOSH when they renovated a beautiful rooftop garden. To be asked to be part of DIY SOS at Great Ormond Street is such an honour albeit bitter sweet, for Dylan has been a patient all of his life. Dylan had great fun filming though and kept Presenter Nick Knowles and his team on their toes!!


We even appeared on a South American Breakfast show.
Social media has a huge impact on society and even the celebs love to partake! Because of the way society works, Dylan has gained a superfan who we are in ore of. A truly wonderful inspirational lady. Katie Piper we 💖 you.


We live each day making memories and we have made some beautiful memories whilst raising awareness.


We were literally raising awareness across the globe. The more exposure, the wider the audience. My mission is to spread the word #undiagnosed. No one knows what the future will hold for Dylan, but no one knows what the future holds for any of us. Dylan is an inspiration who continually reminds us what is truly important in life. Dylan has created an incredible bond in our family making us who we are: strong independent parents who take what’s thrown at us and make a life out of it.


In today’s age of tablets and smartphones, it is incredibly easy to communicate your story with the world. I urge you, if you have a message you want to spread, publish blogs/ vlogs, and create Facebook/ Twitter accounts. You will be amazed how much support you will receive and, what’s more, learn you really are not alone.


Undiagnosed Children’s Day is a nationwide event on Friday 28 April to increase awareness of undiagnosed genetic conditions and raise funds to support SWAN UK, the only dedicated support available in the UK for families of children with undiagnosed genetic conditions.

Last year fundraisers, schools, families, companies and donations raised a (approx) £20,000! With your help this year we can take it beyond this figure. To donate TEXT SWAN11 £3
(or any amount up to £10) to 70070 #undiagnosed

Dylan is also fundraising with an outstanding event.  Bigger and better than last years later this year. I am so exited I just can’t wait, and (all being well!) I will have 2 working legs this time to be able to join in. Raising funds for Dylan’s indoor and outdoor sensory rooms. To donate TEXT DYLS65 £2, £5 or £10 to 70070 #dylansstory

Raising awareness is just as important, if not more so than raising funds. Knowledge is power. Please spread the word (& donate a pound or 2 to both amazing causes. Please! 😘)

The ‘P’ Word 

The ‘P‘ word, let’s call it ‘potato‘ 

Isn’t it strange how one simple word can make you quiver 

There’s a few I can think of but one new one has become part of my vocabulary this week. 

PALLIATIVE (care) 

The word yells ‘end of life‘ at me. I’ve only just come to terms with the words ‘life-limiting and life-threatening‘ The words that made my legs crumble beneath me when I heard that and Dylan in one sentence. 

Now, those who follow my blogs may have noticed I’ve been a bit quiet of late. Sometimes words just flow. Other times I’m just like Dylan ‘non-verbal’ I apologise for my distance. 
Firstly I would like to wish you all a very happy & healthy New Year. 

Like every New Year, I think ‘this’ll be our year’ However, (& I really don’t like to talk too soon) we have started each year, 2011 through to 2016 with a poorly little boy (thanks time-hop & Facebook memories for not letting me forget!

Now 2017 (albeit we are only 17 days in) is proving to be a positive one. The most positive by far. For our gorgeous little boy Dylan is doing well, very well in fact. Our generally sick little boy is suddenly full of laughter and giggles, cuddles & naughtiness. He’s happy, fun-loving, cheeky, newly inquisitive, incredibly messy and extremely funny. Oh, and when he wiggles his toes in ‘if you’re happy and you know it‘ I could just eat him up. 


Back to the ‘P‘ word. 

When an appointment came through to see a paediatric consultant from the Palliative care team at GOSH I felt physically sick. This isn’t a general paediatric appointment. Not just anyone can see this type of doctor. 
Now, when he’s doing so well as well. The stigma of the ‘P’ word was making my eyes sting. 


Stigma. I’ve experienced many of these in the six and a half years I’ve been Dylan’s mummy. A couple of years ago when we were referred to a children’s hospice I had the same feeling. 
Children’s Hospice; A nice place for child and family. Nothing else. 

When I googled the ‘P‘ word the definition was far from what I was imaging. In fact what defines the word described exactly what Dylan requires. 


Palliative; To alleviate pain without dealing with the cause of the problem. This I can deal with. This is what Dylan requires. A doctor who specialises in pain management and can tweak Dylan’s pain relief in order to help him. Especially when the worlds renowned stongest drug rarely works. 

The ‘P’ word. A word I am now not scared of. 

The only ‘P‘word I will be using for 2017 is……… Positivity 


🎼Like a small boat on the ocean🎼 

I have been hit by writers block once again with so much going on in my life recently to know exactly what to blog about and where to start is a headache in its self. 

Hearing Dylan belly laugh for the first time in almost a month is the only inspiration I need….. 

From losing his independence because of a nasty arthritis flare up, to having multiple virus’s leaving him lethargic and lifeless, to now hearing him laugh makes me feel all warm and gooey, the love I have for this helpless child is indescribable. 

So the hot question I have spinning around my head is ……

” Why the hell do we keep putting him through all these (unnecessary) intrusive procedures ?? “


For every General Anaesthetic attacks his already compromised immune system, leaving him prone to more illnesses. Meaning his already compromised life expectancy is at risk. 
Having so many underlying illnesses means every time he’s attacked by a virus or an infection all of Dylan’s problems decide to rear their ugly little heads and upset my boy and us all.  

And for what???? 

Every parent of an undiagnosed child can almost certainly guess the outcome of these investigations we put our poor innocent children through. 

” Unfortunately Mr & Mrs Dylan’s parents the results of the recent test show nothing’s wrong “ 

Hmmmm obviously there is something wrong for my beautiful little boy, who is approaching his biggest mile-stone to date, his 6th birthday, is stuck in the body and mind of a baby. 
Yes he has 10 perfect fingers and 10 perfect little toes but he also has more than 

  • 20 horrid diagnosis, 
  • Is under 15 different teams at Great Ormond Street Hospital 
  • Has 4 different Clinical Nurse Specialists, 
  • Is on 15 different daily drugs, 
  • Has 1 weekly subcutaneous (chemotherapy) injection, 
  • and 1 weekly infusion 

all that’s missing is his Partridge in a Pear Tree – his overall genetic diagnosis. 

So yes something is obviously bloody wrong. 

Every suggested investigation brings so many emotions. 
At the beginning we thought 

‘we shall put him through this xxx procedure as it will give us the answers we are seeking’ 

To the next investigation:

‘the last test was wrong now we will get our the answers we are looking forward’ 

to 

‘the last 20 tests couldn’t have been performed correctly at least now we will get out answers’ 

to now, after more than 50 different investigations my left and right side of my brain have its own conversation; 

(left side of brain pipes up) ‘is there any point putting him through all this again to not get any answers’ 

(Right side of brain debates) ‘but this might be the test to answer our prayers’ 


In the mean time if Dylan spends a whole month, following one of these procedures with his health deteriorating and  being rushed back and forth to A&E is any of it actually worth it??? 


So the real question is when do we say enough is enough?? 

It’s not giving up is it?? 
It’s just letting Dylan live with his Undiagnosed Condition for as long as he’s able to and continue to let him belly laugh over the silly little things that make him the happy little chappy he is. 

But please, do not judge me when you read on Facebook later this year that Dylan is undergoing yet another (pointless) investigation. As you never know, “dreams can come true” 

But in the mean time I’ve dedicated Rachel Platten’s fight song to the strongest fighter I know….. Cause I’ve still got a lot of fight left in me 💙


Please don’t forget to support us in anyway you can – September 11th, put it in your diary now for its Dylan’s Fabulous Fun Day It is going to be a spectacular day. Fundraising via the Tree of Hope to help make Dylan’s life simpler. If you are able to donate as little as £1 Dylan would be incredibly grateful. Please click on link above or TEXT DYLS65 to 70070

Until next time. 
Dylan’s Mummy xx 

Don’t Worry be Happy 😃😃😃

  

Any parent who has a child who is medically complex means business!   

  
They should have a sign around the neck saying ‘DO NOT MESS! (Especially before our first infusion of the day of caffeine!!) This includes the endless doctors, nurses and health professionals involved in their care that think they might know our children. Without any letters after our names we are more qualified than most of them. 

 

Now please don’t get me wrong, not only could my Dylan not live without their care and input and I couldn’t perform any surgery as they can (although I would happily give it a try), I am simply saying until you have the job, like us caring for your children who are 100000% dependant on you 24 hours a day 7 days a week with no real signs of being able to become any more self sufficient in the future and on the astounding and taxable amount of £0.369642857142857 per hour as a carer, you don’t really know them at all. 

  

Us parents of medically complex children have had to develop a huge sense of humour! Most of the time if we don’t laugh we will cry. That, and a really thick skin. We’ve had to find ‘our‘ main server to switch off our emotions or onto a needs-must basis. Along with appreciating the quality of life and not so much of the material things (oooooooooh always a little room for a designer handbag and sparkly shoes! every girl needs a little pick me up after all!!!) 

  

Welcome to our world!! 
Syringes in handbag, clanging bottles of potent meds, subcutaneous injections and butterfly needles on hand, frustrated non-verbal children, endless hospital appointments, non existent sleep patterns, and scarily not wanting to look to far into the future. Who knows what the future may bring?? and all of us SWAN parents with at least 2 million, 300 hundred and 66 unanswered questions. Number One being; ‘what’s wrong with my child?’ 

  

Now. Statistics I don’t have but out of the medically complex children in this world there are the ones whom, like Dylan are #undiagnosed. This has added plenty more bumps in our already rocky road *definition = A hindrance in some quest or extended task, As most of these children, like Dylan are serviced from the head to the toes. (See I am humorous ha ha!!) 
Getting over 14 different teams, professors and their nurses at Great Ormond Street Hospital all singing from the same hymn sheet is incredibly hard work. This is another part of my job, it’s lucky the salary so good else I’d be on the look out for another one!!!!!

  

Which is why UCD taking place later this month, on Friday the 29th of April is so very important to us. 

  

Undiagnosed Children’s Day is a nationwide event to increase awareness of undiagnosed genetic conditions and raise funds to support the work of SWAN UK (syndromes without a name) – the only support available in the UK for affected families. 
There are lots of ways you can help support the day – why not change your social media profile picture (to this one below) or cover image and if people ask you what your picture is of, just by you telling them raises a little more awareness for both SWAN UK and Dylan’s Story. #undiagnoed #dylansstory

  

Did you know over 6000 children each year are born with an undiagnosed genetic condition? Before Dylan I had no idea. Nor did I realise it is even possible for someone to be #undiagnosed. This is not always a temporary stage. Families can face a lifetime of not knowing and struggling to access the information, support and services they need for their children. With out a diagnosis these children (and their families) need to be taken seriously. A lot, like Dylan on several genetic studies but because of the rarity still may never get the label they’re so desperately searching for. 

 
Children living with an undiagnosed genetic condition do not fit into any particular boxes. They have no label or title and most have no prognosis no real expectations. SWAN UK is a lifeline to hundreds of families like ours where our children all just seem to fit nicely. 

When doctors say they simply can not answer your burning question it leaves your brain frazzled. 

  
What do you mean you don’t know. You must have treated plenty of children just like Dylan??? 
When we were first told this back on Sky Ward at GOSH when Dylan was just 6 months old we were younger then, much more naive our control was purely in the hands of these professionals whom we looked up to desperately after their help, advise and hope of making our sick little boy better and to put this awful nightmare behind us. 
Thinking the next consultant, our second opinion will have our answers, now speedily approaching 6 years old and with almost 50 health professionals under our belts (not including the 100’s we’ve met along the way) still with no answers we’ve retired to the fact we may never ever get our diagnosis. ‘Dylanitis‘ as it was first joked about at GOSH!! 
Having a child who is a SWAN can leave parents feeling very isolated, not having anyone to talk to with perhaps an older child to see what the future may hold for our little boy can be a lonely and scary place. 

  

Optimism (and prayers) is the only way forward for I am at the conclusion not one single one of us knows what’s around that corner, the only difference you are able plan ahead in yours and your children’s life. For us we are so grateful for every single day and cherish every moment. 
Enjoy today, live tomorrow as it turns into today. Yesterday is a memory to cherish forever. 

  
Being part of the SWAN community has helped me become the strong independent woman I am today. I’ve met some fabulous ladies all traveling the same rocky road as me and some amazing SWAN friends for Dylan. Thank you SWAN UK
Dylan may or may not get a diagnosis in his lifetime but he will always be a SWAN
This is why UNDIAGNOSED CHILDREN’S DAY is hugely important to us. 

Please show you’re support in what ever way you can. 
  

Working 9 to 5 (and also 5 to 9!) 🕐🕑🕒🕓

 It’s been a month since my last one and since then I’ve started many but not had the ‘umph’ or energy to finish one. This worries me as I’ve always got plenty to say……
  

Have I lost my mojo or am I just too busy?? Maybe it’s because nothing significant has really happened. I mean…. 

  • Giving infusions has become part of my routine, in fact, meds have been increased as part of his immunity is lower than when he started. Work that one out #mrtopsyturvey

                  

  • We’ve had so many consultant and therapy appointments they’ve all kinda rolled into one.
  • I’ve had a journalist working with Dylan’s Story but nothing’s gone national. Yet!! 
  • Our charity is ‘still in process’ 

         

  • My gorgeous friend ahem I mean P.A is planning a ball in aid of Dylan. #Watchthisspace!! 
  • The plans for the ‘big build’ are being drawn up….
  • Dylan’s fabulous Lead Consultant at GOSH ‘Prof B(who hates any social media or publicity…. Who I will get to talk when we get our diagnosis!! ???) referred us for the 100,000 Genome Project which we have been recruited for #excitingtimes

  

  • Both Dylan and I have been using facilities at Haven House Children’s Hospice again after a few months off. Unfortunately that ‘stigma’ crept in and scared me but I’m over that now!! #welovehavenhouse. Even Dylan’s big sister has been working on a project there which we are all very excited about #Watchthisspace 

  

  • I’ve been organising a 10th birthday party and a 70th birthday party

   

  • Also, a SWAN UK meet up for UCD (Undiagnosed Children’s Day) 29th April 2016, raising awareness for this day….
  • Oh and I have became a Parent Rep (West Essex) for SWAN UK, a voluntary post offering so many hours a month of my free time. FREE TIME…. What the hell is that??? 

  

(It’s a good job part of Dylan’s condition means he doesn’t sleep, look at all the extra hours in the day I get!!) 

So I guess this may be the reason I haven’t had the time, umph or energy to finish a blog………. 

It’s a good job Mother’s Day is early this year as I am sooooo looking forward to ‘doing nothing’ (after doing Dylan’s infusion of course!!) putting my feet up and being waited on by my gorgeous husband and beautiful daughter. (Watching Dylan make a mess and them clear it up hahahaha who am I kidding) #keepdreamingkid. A fab fun family day with a meal out that I didn’t have to cook will be wonderful. Can’t wait. 

Happy mummy’s day to my beautiful mummy and mummy-in-law, my special friend who hasn’t got her mummy with her on mummy’s day, to all my mummy friends and to the amazing mummy’s, like  me, who have been blessed with the special ones. 💙💗💙💗

  

Cuddle them littlens tightly, most of them don’t stay little for ever 💙💙💙

Krazy “little thing” called L❤️VE 

  

So…….. He’s gonna be small!Tell me something I don’t know!!! *said in a high pitched squeal 

  

He is small and has been small since I carried him. 83cm small to be precise! 

My little dot. My special little man. My bundle of joy. My complete and utter world 🌍

He may be small but he is mighty. 

  

  • From day 7 he cried for days and weeks on end (in pain) 
  • At 2-months old he stunned everyone with his new trick, vacant episodes. But did it bother him?? Did it ‘eck, Bothered us though
  • At 5-months old when I thought he’d died in my arms he came back kicking and screaming and as good as new *a trick he does frequently 😱😱 

Honestly this child……..

Also at 5-months old, when doctors said he wasn’t strong enough for general anaesthetic at GOSH, he showed everyone who was boss and has since been put under more than 25 times *I have honestly lost count

When he was about 6-months old he had his leg plasteed at GOSH in hope of straightening it, he only went and bent it straight back into its crooked shape right before our eyes *instantly as the plaster was removed.  

So you get me??? 

This child, who, I was told wouldn’t sit up, crawl or walk (we are still waiting for the latter but I know it will come, little steps n all….. Excuse the pun!!) has defied almost all odds against him. 

And as for the Neurologist at Addenbrooks who said he’d eat his hat if Dylan ever walked I have a large tasty Sombrero filled with arsenic ready to go….. Well one day. A girl can dream can’t she??? 
 

  
For those who read my blog last year ‘Every Little Thing He Does Is Magic’ *THANK YOU, after our meeting with Dylan’s Endocrinologist at GOSH, may be able to relate to how I am feeling today after our follow up appointment. Please click on link to refresh yourself. Every little thing he does is magic 

Today was our first appointment with Dylan’s Endocrinologist since last May, I thought I’d be absolutely fine going it alone. But  I bottled it at the last minute so Rich stepped up to the plate, cancelled his work and came with me. Right by my side. My total rock. #iamaluckygirl

We arrived on time for our appointment *shock horror and were seen almost immediately *more shock horror The consultant diplomatically reiterated a lot of what we had already discussed; Dylan’s body produces such a large amount of growth hormones but they just do not work. 

Basically in layman’s terms. ‘Dylan’s brain tells his pituitary gland that he’s not growing so it produces even more natural growth hormones. Hundreds of the things. More than me or you have. All of which lay dormant in his little body. Therefore if we went down the hormone replacement therapy road not only would it almost definitely have no effect of Dylan’s growth the side effects would be a given. As a family we have digested the fact that this is just simply not an option for us. #thedrugsdontwork

The Facts; 

  • Dylan grows on average one and a half centre meters a year.
  • Dylan’s remained the same weight for approximately two years 
  • Dylan is way below any centile line
  • Dylan’s genetic make up means he was destined to be small
  • If we took Dylan off of all of his toxic medications he may grow a little bit. He may not. 
  • Dylan is the best gift in a teeny package 💙

  
So he’s just going to be little. He’s just going to be short. He’s just going to be DYLAN and we wouldn’t have him any other way. 
  
He might have a little body but it’s our little body. But for a little man he definitely has a HUMUNGOUS personality, bags of laughter, lots of quirkiness and a few strange habits *adidas hoodie obsession for one!. He’s little enough to hold in my arms and squeeze with love. He’s little enough to smother in kisses 💋💋💋. He is just perfect. He’s is just Dylan and it’s his story. #dylansstory

  

Keep writing it baby boy  I want the longest novel ever 😘😘😘
  

Keeeeeeeep Blogging….. (Ps Dylan you’re my favourite!) 

  
Our busiest, most productive and healthiest filled to the brim festive period is over with thank goodness nothing bad to report. 
  

Amazingly 2015 was Dylan’s 6th Christmas, not so amazingly he still didn’t have any understanding of meaning or the excitement but he enjoyed it. He enjoyed our manic two weeks of constant fun with family, friends and Mickey.  


With all that go you’d think it’ll be time for us to settle into a quiet January….. Fear not, January is where it all starts again. For on the final and 12th day of Christmas Dylan ended up in A&E, a little blip but Dylan makes sure he keeps us on our toes. Putting his mark firmly on 2016. 

Hot topic of conversation in the blogging community so far this year is about a blog about us special needs parents blogging. In so many words it’s a blog about how *’we‘ manipulate our children by blogging about them without their consent and do it for attention. #itsnotusattentionseeking #crippingthemighty #bloggoff (Dylan’s daddy said)

I wholeheartedly am a mummy of a special needs child with a life limiting condition who has complex health issues and enjoys sharing my experiences. Quite frankly I want to shout about Dylan’s progress from the roof tops but I also like to share the not such good news. #raisingawareness #welcometomyworld  

 Why do it do it? 

  • I blog in hope that I raise awareness for undiagnosed children #undiagnosed
  • I blog so that other special needs parents read my blogs and  can relate to similar experiences. 
  • I blog to get ‘it’ off my chest so I can deal with whatever’s thrown at us next. 
  • I blog in hope that someone somewhere at the beginning of their journey that I am on sees some kind of light at the end of the long tunnel I am still in. #standstillinblackwalltunnel
  • More importantly I blog to see if there is ‘another Dylan’ out there. I want to find him or a ‘Doctor’ that just might have an incline of an answer I hope might get in touch. 
  • But mostly I blog about experiences personal to me and my family.  

Most of us blog because we find it; therapeutic, informative and to raise awareness. We do not exploit our children, (perhaps if they were able-bodied and verbal we wouldn’t have a need to blog.) We only do it with every good intention and reasonings. 

I absolutely love reading others bloggers views on being a special needs parents, a lot of which I can relate to, empathise with and learn from. 

* I speak as ‘we‘ on behalf of the **SWAN bloggers community **I am so nervous but also so looking forward to the SWAN UK Bloggers Workshop later this month. It was be the first time in Dylan’s life I’ll be separated from him for over 24 hours. But that’s another blog. Watch this space. #excited #nervous #SWANUKbloggersworkshop

So what does 2016 have in store for Dylan’s Story?? Lots of visits to GOSH, Lots of blood tests. Physiotherapy, a new Speech Therapist, continued infusions, exciting new home education, SNAP, Haven House, SWAN meet ups and what ever else is thrown at us. 

Plus I’d love if 2016 is the year we get to take Dylan to Disney……. 

As for me I should have been in the circus;  Being a mummy, a wife, a carer, a daughter, a sister an auntie and a friend (not the best one at times I know) 

  • My job has no set hours.
  • No time off 
  • No holidays
  • No sick pay
  • No lunch breaks. 

  
 

    My Job requirements to be a special needs parent require; 

    • A willingness to be available constantly. 
    • Responsibilities include availability to work under immense pressure; 
    • sleep deprivation, 
    • putting my child’s needs before my own, 
    • Provide around the clock care
    • Intake of humungous amounts of caffeine… 
    • Being a real life superhero! 

      

      Role concists of being a;

      • Play therapist, 
      • Physiotherapist, 
      • Occupational Therapist,
      • Speech Therapist,
      • GP,
      • Pharmacist,
      • PA,
      • Nurse,
      • Teacher
      • Chauffeur, 
      • Carer, 
      • His eyes,
      • His ears,
      • His voice 

      Length of contract

      • Ongoing – please g-d forever

      Hours of work; 

      • 24 hours a day 8 days a week.

      Salary

      • £50 odd a week Carers Allowance!  

      Quitting is nonnegotiable.

        

      I take it all in my stride but I don’t claim that it’s the easiest job I’ve ever had. 

      Along with managing my daughters busy social life, running the home, cooking, cleaning, ironing etc. etc. etc.  

      I wouldn’t change a single thing.

      So now dare tell me not to blog about my life, my family and my special son. 

       I have been blessed. 2016; please make it a good one for my Dylan, my superhero. 

        
       

      Bows 🎀 Presents 🛍 and a Wheelchair ♿️

      The lead up to Christmas, my favourite time of year. But like every year I wonder what Dylan will make of it. Last year, his fifth Christmas
      he recognised Christmas trees and pointed to the lights, this year, Christmas number 6 I am hoping Dylan will get a little pleasure from the festive period.

      I love this festive time of year, the build up to Christmas is the most exciting. I love being a Christmas Fairy and spending all my money on my children, husband and loved ones ensuring they all have the most fabulous gifts (note to hubby…. I still love receiving gifts too – mostly of the designer handbag sort lol!!)

      Dylan’s always the most difficult to buy for, as he is not age appropriate and his level of development plateau’s. This year I have found some beauty’s for my little prince! Can’t wait to give him them

      Those of you that know me know I love to, in my spare time, which there’s not much of in my world,  make beautiful handmade hair bows. I enjoy doing two Christmas fetes each year locally.

      This year, as we are in the process of starting Dylan’s Story Charity (not a registered Charity yet) I will be putting all my sales towards Dylan’s new wheelchair accessories, which we went for fittings for today. So if you buy a bow from my stall you’ll know you are helping a great cause

      Which leads me on to…….

      Every single hurdle is tough and not one is in the ‘mummy hand guide’ But of my hardest yet, which even though I have been expecting it for years, acceptance is tough. Today was Dylan’s wheelchair assessment…..                                                             You see my five year old baby fits so snug in his McLaren stroller I’ve wanted to keep him in it. He’s happy in it. It’s lightweight, & great for doing Christmas shopping with!!

      However, Dylan, who is already Hemevertibrae T6-9 (slightly curved spine) is leaning to the left putting a strain on his spine and pelvis meaning he could fix in this position. Now we don’t want that, so my broken heart aside, we tested the wheelchairs. We have decided to go with a ‘special buggy’ wheelchair. It’s bulky, it’s heavy, it’s ugly and horrible and if I am honest I totally hate it but Dylan took to it like a duck to water, or a SWAN in our case.


      Although he refused to smile for the pics, he did really like it.


      It should be delivered after Christmas so time for me to mentally prepare myself to push a ‘wheelchair’ around. Sell lots of bows to help fund it. But like with everything else that’s been chucked at me I will learn to love it and deal with it just fine. After all my beautiful boy will be in it

      To sum up how I’m feeling knowing my Dylan’s going from a buggy to a wheelchair is heartbreaking, admitting the truth hurts, life stinks sometimes……


      Then I look at my gorgeous happy little boy and absolutely nothing else matters but his health and wellbeing.

      Dylan mummy loves you more than you will ever ever know. 💙💙💙

      BMJ (British Medical Journal)

      A RIDDLE; A person or thing that is difficult to understand or explain, a question that has no answer. 

      Everyday for the last five years I have asked ‘somebody’ a question about our little boy and not one person can give me the correct answer. Why? Because Dylan has a rare undiagnosed genetic condition. So rare no doctor has ever come across another person who presents the same. Dylan is simply a five year old little boy living in the body and mind of a nine-month old baby. He presents in every single way the same as a nine-month old baby would, he is the size and mentality of one and is so super cute everyone wants to squeeze him, but internally he is a very sick little boy who has too many health complications, from his head to his toes.


      Words make known. But we are living in the Unknown.

      Now I am the sort of person who likes to know where I stand. I like to be organised, know exactly what I am dealing with. To be honest I am not even keen on birthday surprises. So you can imagine my shock when at 27-weeks pregnant with Dylan I got told “he’s not growing, he’s getting smaller oh & he’s got a genetic condition but you won’t find out which or how severe until he is born” Not the news any parent wants to hear, such a vague outlook but especially not to the person who always likes to be in control. Dylan was born on the 20/08/2010 a small but healthy 2.5kg. So tiny but so perfect. His problems started at ten-days old but wasn’t until he was eight-weeks old he was taken into hospital for investigations, blue flashing lighted to a more specific hospital but discharged with all tests showing all was ok?? At five-months old Dylan was again blue-flashing lighted into Great Ormond Street Hospital for Sick Children where we spent almost a month with various different departments investigating Dylan, from Neurology, his head, to Rheumatology, his toes, where we got the same answers as before

      “all tests come back negative”

      nothing was wrong with my sick baby. Doctors didn’t think he’d get through this period being so small and sick, but he did, so here I am five-years later, still none the wiser, but now I am much stronger person with the most incredible little boy who has made me this way.


      Lots of things are mysteries. But that doesn’t mean there isn’t an answer to them. It’s just that scientists haven’t found them yet.

      Having no answers, no label and no name is honestly the most frustrating, upsetting and depressing part. For years I have asked why does he….? When will he…? What if…..? Why…..? To any Health Professional that will listen. Dylan is under over forty from Consultants to Therapists so that’s a lotta questions to a lotta people.

      We have been on Genetic studies for over three-years but still no answers. I have googled, boy have I googled, I have researched, I’ve read, I’ve wished, I’ve hoped and I’ve prayed but it was only when I discovered SWAN UK (Syndrome Without a Name) that I realised I wasn’t completely alone.

      I thought this is it….. I will have my answers, I will find lots of children across the country all the same as my little boy. Wrong again, there really isn’t another Dylan, in this world that we are aware of, but instead I found a community of like-minded people, all with the same questions to ask as me. Everyone has a special undiagnosed child and can feel my pain and reap my rewards. A whole new world opened for us. Maybe one day we will get an answer?

      Dylan’s life in words; Dylan’s Story  

      So five-years on and still no answers, the only label is he is a ‘SWAN’ which represents a beautiful white bird. It is a label I am happy with. A diagnosis now wouldn’t change a thing. I have learnt it would be so rare and probably with a name like ‘-xy+z deletion’ (*for example) that it wouldn’t help us. I have wanted something so much for so long but all I have been wanting is a name. It wouldn’t change a thing about Dylan, it wouldn’t change the care he requires on a daily basis or the medication he needs, it can’t make him better. Albeit it may give us a more dignified prognosis, but we already know Dylan’s condition is life-limited and life-threatening and we know we probably won’t have him forever. But our gorgeous little superboy has already defied doctors and I know in my heart he will continue to do so.
      A diagnosis may come with definite’s, we have already been told Dylan won’t sit up – and he can!!! That he won’t crawl – and he can and at he won’t walk – my child will try to, I know that much!!!

      ‘A diagnosis brings a prognosis’ therefore ‘without a prognosis the world is Dylan’s oyster!’

         

      Nameless not shameless……..

      It’s taken long time to accept, but not having diagnosis is not the worst part. It’s like buying tin with no label on, what’s inside is a surprise and it’s even better when the surprise is sweet and yummy – Just like Dylan.

        Dylansstory.wordpress.com

      @dylansstory

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