The Paediatric Health Field

So, I’ve complained a lot in the past week or two about my biopsy.  It’s healing nicely, by the way.  However, I have not really said much about Scratch, mostly because those I’ve really wanted to tell whats going on to, I do so over the phone or email.

Scratch hasn’t been well for some time – she’s had a very distended belly, especially after sugar (especially fruit sugars) and other problems that have shown she’s not a well girly…

Right now she is having an Endoscopy and other tubes looking in her in places that give me shivers to think about, quite honestly, as well as a gastric tube being inserted for a barium test tomorrow.

Its difficult, in one part, to know how to tell you what is going on when I don’t fully know it myself.  The doctors, too, are not sure and obviously working towards trying to find out.  All I know is that she is in the right place, where the specialists of the specialisers are and that she is getting the attention she deserves. 

The other part of me worries for MBW, who with her own health problems, is putting herself on the back burner to watch over Scratch. 

So, forgive me if my tweets appear half-in-tune or my facebook is fairly cryptic.  Its not you, its me.

The Mercutio Analysis

Anguish and pain filled me yesterday whilst I was sat on the sofa, my faithful steed sat on its haunches (yes, it has haunches) beside me waiting to jump into action, when I discovered a fairly deep scratch of painful proportions.

Bearing in mind that this wheelchair is still very new (especially for me) and something that I want to really look after, this scratch on the Xenon hit me like a knife to the chest. 

After blaming all and sundry, I look a close look only to see that this deep mark holds all the hallmarks of my cursed enemy – doors. Its height is perfect to match up to a kick plate.  The cut could only have been achieved with metal on metal contact, like the stuff they make in Port Tybalt Talbot.

Having discussed this issue with fellow chair users online, I think I am off to Halfords for a touch up paint kit for a car… because Sunrise don’t do them for the wheelchair.  I can’t help but feel a trick was missed there.  Although I’ll get it out, I’ll always know it was there though.  Battle scars and all.

The space-time-wedding band continuum

I hate waking up once I’m in either a good sleep or a semi good sleep but very warm.  However, waking up and seeing :44 on my clock made me think “Oh crikes!” (Not strictly true but you know, universal rating of a blog post), you can imagine the nice surprise when my brain clocks (clocks, get it?!) the great big red 5 next to it – a whole 30 minutes left to doze!

From there, my morning descended.  My towel for my shower was cold and unwelcoming, the wheelchair covered in cat hair thanks to the resident mog.  I had to replace the head on my toothbrush because it was covered in blonds strands of Monkey hair.

I usually go on the motto of “if I’m having to suffer I’d prefer not to go through it alone” but frankly, MBW would be pretty hacked off at getting up after a night with Nuzzle and Scratch playing “how much sleep can we deprive Mummy of”.  So I got on with it.  Heating on (sorry MBW), towel warmed – shower, drip dry, teeth brushed, spray odorant (wet crip) on to my towel, beard fresher on to the wheelchair – I’m good to go provided I’m visiting a naturist reserve.

WP_000090I find my clothing with little problems, making a mental note to get more trousers in for dry cleaning and remembering to grab my work pass.  Lunch out the fridge, glance down and where the Fallugian protestor is my wedding ring?”

I wheel into the bedroom and hunt through yesterdays trousers, turning up only a little red round lego light brick (which I have put back in my ring pocket on my cargo trousers – do not let me forget) and a Trading Standards Buy With Confidence trolley coinage thing.  Crumbs. 

I dash into the bathroom, not spying it amongst the wealth of toothbrushes, toothbrush heads, toiletries and whatever the heck that sticky stuff is on the base of the mirror – I don’t want to know, its blue, its gooey and frankly looks a little like it could be a new life form but I do not want to know right now it is 07:15 and I am running out of time and my taxi will be here in a minute and I want to go out the door looking like I might actually be married god help the woman who is married to this one.

009_pooh_thoughtful_spot-1-In instances where you have lost something, you should consider what Winnie the Pooh might do in this instance.  Find a nice place to call your thinking spot.  A pot of honey to help lubricate the cranial juices.  Relax to allow your self to cast your mind back and…

The bloody cat has got it.  She’s located it on the kitchen windowsill, where I put it last night to wash up and is playing with it. I dash in hissing at her to bugger off.  On the one morning when hissing should work, she ignores me and nudges it on to the kitchen side (remind me to disinfect beside the sink) and along as I now have to stand for a moment and wobble towards her.  She looks up – I swear she winks at me – giving it one last kick towards the gap between the cooker and the side, it turning up on to the outer edge and rolling, rolling, rolling…

it rolls to the edge and stops.   No body breathe.  The cat, guessing her nine lives could be cut down rapidly, makes a brisk exit towards a hiding place I have yet to discover.  I grab at the ring, shoving it on to the correct finger and therefore confirm my place in this wedlock as the husband.

I shove my lunch in my bag, grab keys, pass, phones and laptop and leave, returning only for my coat and shoes.

The Anticipation of an International Symposium for Wheeled Seating Solutions

I would be telling fibs if I said that by now, I’m getting excited.  If you are a loyal reader, you both will remember that I tried out a number of wheelchairs over the past 6 months and came to an agonising cliff hanger.  This cliff hanger took place in my own chair though, so no one was the wiser…

But, on International Wheelchair Day, a day when Wheelchairs become International Business Wheelchairs and International Spy Wheelchairs and International Rock Star Wheelchairs, I am going to share with you my choice, but only after I’ve waffled a bit. 

I believe that Wheelchairs play more than just the part of being a choice of mobility to replace or supplement where walking is not an option.  My wheelchair has always been a part of who I am. Touch the handle and I feel it.  I sense all going on around my chair. 

My wheelchair has to be my word day suit, my evening rest attire, my play time overalls, my sick time comfort.  It is the item that I am seen in most – it must represent all that I am and show me to be the person I chose to be in the first glance and the final good bye.

I got married in my wheelchair, I carried my first born, my second born and third born, all in my wheelchair.  I have laughed in it, cried in it, sang, danced, drank, eaten, broken wind (!) and most of all I have listened in it.  My wheelchair is always there with me.  The current chair has been more so – for this paragraph at least – it has been the only chair MBW, Monkey, Nuzzle and Scratch have ever known.

My chair can go fast, it can go slow, it can corner, it goes straight.  It’s quiet on a smooth surface, it’s noisy on the bumps. 

And for all the amount I wish I were walking today, I know that my choice of mobility now will be my noble stead – and I like the chair I have.

So when you see me next, if you know me, its ok to tell me that my chair looks nice, or it needs a clean.  It’s ok to tell me that my light up wheels make you smile or that having the word “Quickie” on the back is inappropriate in a professional workplace. 

But not everyone has a suitable wheelchair.  They are expensive.  Each is custom made to the user and children especially go through them quickly as they grow.  So, on International Wheelchair Day, this is what I ask of you.  Please go to Whizz-Kidz Donation page and give them a little something if you can. 

And I’ll thank you for it – from my new Xenon, if I can.

The Momentum Upon Steel Alloy Propulsion Formula

Its not often I’ll blog about a service unless I think its been something to note.  So, the following is a positive post about a recent journey – I paid for it, I made it and this is what happened.  Continue reading

The Genetics Correlation between Generations

Its been some time since I mentioned about the re-diagnosis business but this is mostly due to a combination of festive holidays and trying to track my notes down from Cardiff.

However, yesterday we had an appointment for Scratch, who has been a late walker and therefore a concern to us. So we met with a genetics doctor from GOSH (Great Ormond Street Hospital) who, after some fun with the family tree, began to look at Scratch, Nuzzle too as they are twins, Monkey as she has some hypermobility – and then looked at me (like a museum relic).

Then she explained about some bits going on in terms of diagnosis techniques that have changed over the years, that actually I should be seen by Queens Square in London but also know that things are less invasive than they were 10 or 20 years ago. The info would be of benefit now not just to myself but to Scratch too, as it can help any possible DNA testing for them. Yes, she said all of this about me.

She suggested starting with a blood test for CK markers on Scratch, and then then gave me a blood test note for DNA storage.

So, I am now resigned to the fact I’m heading for another biopsy but mostly because this will benefit my children now. Probably a needle EMG too, knowing my luck. The only immediate consulation about the impending jabbing was that they offered to take my blood on the childrens ward. They have the freeze spray there. And cool plasters.

The Oxidane Solidification

I’m not, by any stretch, a fan of anything cold unless it comes out of a beer tap and is called beer.  I’m just a bit of a grumpy old man when it comes down to it.  In fact, I’m a bit more than “just a bit” – but that is by the by.

I’m a complete grumpus when it comes to snow.  Snow and I do not get along.  It would be correct if I said:

I consider snow to be like a beach – only fun for those watching me try to manoeuvre in it.

If you’ve not got it – I really am not into the white stuff (snow).

You can only imagine my joy at 07:00 on a Sunday morning to hear MBW exclaim “Oh look, how exciting… wake up Doink! There’s snow!”  I recall now that I tried to mumble something to show that I understand her excitement but don’t wish to participate at such a time that really should only exist if you have a flight to catch to somewhere without any snow.  That wasn’t enough, and MBW had to wake up Monkey – who after a cup of tea joined in the excitement – shortly to be joined by Nuzzle and Scratch. 

But here is why I don’t like snow – its not the fact its cold (contributing but not definitive) nor the fact it brings all the trains to a stand (that is the fault of BREL) – its the fact I cannot go anywhere in the humming stuff.

snow-2Whilst everyone is out taking picturesque photographs of their loved ones and their pets frolicking around in the ice and snow, leaving trails of their welly boots and building humanoid resemblances at best or at worst, humpty dumpty post fall, I am invariably kissed on the cheek, told excitedly “snow!” and a request is made for hot chocolates or tea to be prepared when they all return before I am abandoned for a fleeting visitor whos loyalty to the British winter season is about that of a climate change policy in an Oil Refinery.

If I try to go out, my wheelchair will instead end up wedged into the ice and snow, beached like I were a whale on a… beach.  (I couldn’t think of a better analogy.)  Or have ice wedged in every crevice on the wheelchair.  Or find snow inside my arms in seconds.  And have to be rescued every 10 seconds and parked back in my spot the camera and the instructions of “just sit there and take some photos of everyone looking happy.”

snow-1This year, I partook by sitting in a bedroom window and taking photos of the fun.  My only consolance was that Scratch also didn’t quite get into either, but I suspect that is just as fleeting as the white stuff and next year she’ll be out there with the rest of them.

I’ll be the one inside.  But its ok. 

It gives me a chance to catch up on the sleep I lost in the morning.

The Superhero Complex

superdadOur hero (that is I) returns home from a day of saving the world (although how in the name of heck a planet can get into so much peril I do not know).  Clad in blue lycra, a flapping red cape (even with no wind) and underpants complete with a pair of socks stuffed down inside – and a gilet, because it can get cold at 18,000 feet, what with there being no oxygen and all.

I step in, to note that Bynx the Cat (my adversary in this world, other than Dr Evil) was having a good nose around my daughters bedroom – Monkey, Nuzzle and Scratch along with MBW are nowhere to be seen.  I decide to act quickly, grabbing the water pistol and heading in to deal with the cat.  Spraying Bynx quickly seems to send her scuttling – and with good reason. 

My x-ray vision catches sight of a hamster behind a dolls house – it had escaped from its cage.  I corner Pinky Dinky Doo into the dolls house, planning on shutting the doors to keep it there when I notice the doors and windows are missing (damned squatters).  I grab at the hamster, keep not to let it escape into the jaws of a cat – one minute its accomplice, helping it break free in the same vein as a murderer in Redditch, the next turning on it like a newspaper reporter hunting for a scoop.  Pinky Dinky Doo, unaware of my good intentions, takes its jaws to my right hand, ripping apart the skin leaving my super hero blood dripping out.  “Golly Gosh” I exclaim (!), trying to put Pinky Dinky Doo into a pocket to make him safe whilst I fly him up to the top of his cage – glancing up to the top of the 16ft structure identifies they broke open the transportation tube.  Pinky Dinky Doo is not keen on this idea though, so I try to nestle Pinky Dinky Doo in my left hand. 

“Oh no,” squeaks Pinky Dinky Doo in shock and gnaws at my left arm, leaving my hands crimson in a shade that matches my cape.

“Oh my word,” I exclaim.  There is no time to loose – my superhero blood is toxic to any living thing on this planet.  I quickly place the escapee into a laundry basket and place it into a secure hold wet room. 

Just then MBW walks in.  “Oh my word,” she cries.  “What happened?! Oh no!  I think I might faint.  Phone the Police! No! Phone the Mayor!  Put out the Bat Signal.”

“Hold it there, fair maiden,” I boom in deep tones that Terry Wogan dreamed of at 06:30 in the morning in his Radio 2 days.  “Fear not, t’is but a scratch.  I shall go to get some Super Hero Attention from a Medical type person in a moment.  But first, I do not want to change the colour of our good friend Pinky Dinky Doo.  Please, step in there and return him to his home.”  I indicate to the strong hold.  “And the Bat Signal is for Bruce next door.  We need to talk later.”

“Oh, ok,” says MBW, stepping into the secure area.  She picks up Pinky Dinky Doo and steps out of the green zone, nodding to the Police Officers who stood guard outside the room.  (Hang on – was the Police officers a step too far?  Ignore them.) He looks at her adoringly and goes with her, squeaking a thanks to her as he goes into his cage – forgetting it was I who saved him.

WP_000018I fly to Super Hero A+E, get 15 super hero stitches down my left arm, a superglue in my right arm and return two superhero hours later – which is actually 2 seconds in Human time.  MBW looks and admires the sutures as my arm heals before her eyes – a Super Hero Benefit.  “I’d better make the tea then,” she says, skipping into the kitchen in her 1950’s dress.  “Go fetch Daddies’ slippers, someone!”

“Hold on,” says I.  “What about Pinky Dinky Doo?  He is not safe with the villain around.”

“I’ll put a call in to the Mayor via Facebook.” She murmours.  “What a good thing you were here…” 

The Mayor responded quickly.  “I have found a good home for Pinky Dinky Doo.  A lovely lady called Sheila will be arriving tomorrow.”

“A good home?  What constitutes that?” Asks MBW. 

“If they don’t turn up in a van marked Sheila and Sons Furriers, it’s good enough.” I boomed.  “Good work, Mayor.” 

And so Pinky Dinky Doo goes off into the sunset, safe in a new secure home.  Our hero’s work once again complete.

The human existence commencement

Now, far from me to back out of my fatherly duties – in fact, I like to think I get stuck in just as much as any doting father would do.

Except when it comes to nappies simply full of poo.

And when I have to get them dressed, because that takes serious effort.

But otherwise, I’m pretty hands on.

But not tonight – oh no.  Allow me to explain.  Monkey, bless her cottons, had declared in her usual tones “I need a poo”, followed by “I need to be nay-kid…” which in turn was followed by “Muuum can you come with me?”  Since tonight it was pizza, beans and bits, it was assumed (correctly) I would manage in the kitchen (no chefs hat but I’m working on that) with Nuzzle and Scratch for company and MBW would keep the Monkey company in the bathroom.

As Nuzzle, Scratch and myself are discussing the deeds of the day (Nuzzle had managed to save a mouse from a trap), we hear “Why do some babies come out the Mummy’s bottom and some need to be chopped off out of your tummy?”

The kitchen fell silent, awaiting MBW’s response.  “Because most babies are born from their Mummy’s – umm – Mini.  But sometimes if baby gets stuck or if baby is very sick or Mummy is very sick the doctors can do an operation to get the baby out quickly.”

This seems to satisfy Curious Monkey and Scratch continues the discussion in the kitchen about the deeds of the day (she devised a new way to produce a renewable fuel source that wouldn’t destroy the planet) when we hear “But then there’s the thing that needs to be snipped, what’s that?”

Silence fell quickly as we listened for a response.

“When the baby is inside the Mummy, they are attached with a cord because it feeds them but when they come out they don’t need it any more.”

“Why don’t they need it anymore?” She asked.

“Because once they are out they drink milk.”

This has once again sated Monkey and our conversation in the kitchen moves focus towards my deeds of the day (I save… I mean, I worked out a way… I mean… ok, I had nothing) when we heard “So why does some babies drink from Mummy’s boobie and some drink milk from a bottle and not from the Mummy’s boobies?”

Monkey – three and three quarters and asking the slightly difficult ones…  That is not the worst bit though, because as she got off the toilet I heard “I’ve got a little baby because I’m a little girl…”