Working 9 to 5 (and also 5 to 9!) πŸ•πŸ•‘πŸ•’πŸ•“

 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. πŸ’™πŸ’—πŸ’™πŸ’—

  

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

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