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