Lucky Star 🌟⭐️🌟

It’s has just hit me as to why I haven’t been able to blog as frequently of late. 
  

Yesterday on Dolphin Ward whilst seeing Dylan’s paediatrician and discussing Dylan’s ongoing infectious diseases (throat and oesophageal tract infections) it occurred to me that we have no pending procedures under general anaesthetic due any time soon. Normally I’d get told that they’d look down his tubes whilst under GA but seen as Dylan has had almost every intrusive and inquisitive investigations in his almost six year little life there’s practically nothing else that can investigate into at present. 
So he needs his tubes looked into, also needs a dental examination both under GA but neither want to be done as a sole procedure. His knee will need operating on approximately at 7 years old we were told, but seen as Dylan’s legs are the length of a 9 month old baby that’s not gonna happen anytime soon  

  
So I should be able to take a breath and relax surely??? 

  
It approximately works out that’s he’s been put under for something or another at least once every two months of his existence. Wow. That’s a lot of sleep this child’s had (hehehe!!) 

So what I think I’m getting at is that it’s now boring…… Is that a correct thing to say?? 

 
We’re back to regular routine consultant appointments….

• Rheumatology – happy that his inflammation is under control with both his daily steroids and his cytotoxic injections. 
• Orthopaedic– can’t operate until he’s older
• Endocrine – can’t help him grow 
• Neurology – is flummoxed with the abnormalities they found on his scan last year 
• Genetics – starting him on the 100k genome project in May 
• Immunology – I’m giving him his regular infusions, but my boys IG levels are still dropping whilst on the drugs
• Cardiology – regular reviews 
• Gastro – at a stand still, although his reflux is back with a vengeance 
• Respiratory– under review 
• Optometrists– he WILL not wear his glasses
• Dental – under review 
• Along with 2 dozen therapists, community teams and local teams (all that’s missing is a partridge in a pear tree!!!) 

  

Is it boring that we have no ops pending?? Surely not. NO! This is my time to enjoy my little boy. Dylan ‘Peter Pan’ M. 

  

So I should count myself really really lucky, 

• The Past – we’ve been through really tough times, touch and go at times 

• The Future – we’ve got tougher times ahead I know 

• The Present – we have a happy amazing little boy who simply put, is my baby, he doesn’t sit still, he’s constantly on the go 24/7, he’s obsessed with his car tights and Adidas hoody, he handles pain amazingly, he takes everything that’s thrown at him in his stride, he’s never angry. As long as he’s got his Birdseye Potato Waffles or Mcdonalds chips along with his orange flavoured Fruit Shoot and shock horror a brand new addition to his food regime Teeth and Lip sweeties he’s happy as Larry (who is this Larry??) 

In Dylan’s world it’s a happy place. I’d happily swap places and live in Dylan’s world. It seems a lot nicer place than Mummy’s world. He’s a lot happier there than I am in my world. 
I am so Lucky as I have Dylan 24/7. We do everything together. He is my world and he makes my world perfect. 
So for now I’m going to be thankful of the time we have away from being an in-patient (which has turned into being the norm for us), and enjoy every second of normal life, well normal-ish!?!?

Dylan’s my bowl of #luckycharms 💙💙

 

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 💙💙💙