Dylan Henry Jones - Month 8

Friday - 26Oct12
 Went and got Dylan's helmet fitted yesterday.  It's a bit strange, but it's surprisingly easy to get used to.  Although cuddling him isn't quite as easy as the helmet gets in the way a little.
He will be wearing it for 22 to 23 hours a day, but this is built up over a 4-day period.  So yesterday he was wearing it for an hour on then an hour off throughout the day (except for naps and overnight), today it's two hours on and one off, etc.  It's not the easiest thing to put on and we're not totally convinced we've got it right all the time.  It does need to be on reasonably accurately which doesn't really allow for wriggling babies.  Oh well!  Once it's on he seems reasonably unfazed by it which is the main thing.
We have consultations every fortnight for the first month and then every month after that to see how the shape of the head is changing and ensuring the fit is correct given growth.

Laser scan of his head showing deformities. 
This scan is the basis of the internal structure of the helmet.

Wednesday - 17Oct12
Not having the best day, but this wondered past.  Made us both laugh.  A lot.  Especially the bit about the octopus.

Dylan's helmet has been ordered, we just have to make sure we're happy with the colour of it. There is quite a large choice from pink butterflies through to skull and crossbones.  That'll arrive at the end of next week.  Hopefully we'll have some 3d laser scans of his head to post soon.


Monday - 15Oct12
Well, that was an experience!
I can recommend not breaking down in France, especially if parts are required.  Not that we really broke down.  It's just that we would have probably broken down if we'd tried driving home.  The battery wasn't charging so a new alternator was required.  In the UK one of these will set you back in the region of 150quid.  En France... over 300quid.  Unfortunately, even after spending almost half the value of the car on repairs, it's still not completely right. We get to drive around with the battery warning light on until I get round to working out why.  The French garage who did the work didn't know why either.  Joy.
Worse, whilst the car was in the garage, Dylan got (more) ill.  He went to France with a cold, he then got another cold at the start of the second week.  A really quite bad cold.  Which forced us to send him home before the end of the holiday.  The Mother went too as we thought putting a 7month old on the train home by himself a bit much!  It turns out he has bronchiolitis a reasonably common form of cold but one that is not good for small children to catch.  Further details can be found here, but this is an infectious disease of the lower respiratory tract that occurs primarily in the very young.  It is usually due to a viral infection of the bronchioles (the passageways to the air sacs in the lungs).  It is the most common cause of hospitalisation in infants  It's the sort of infection that we were worried that Dylan would catch.  As it turns out, he doesn't need hospitalisation, although he is not a happy boy.  Although in fairness, if we'd had a car and been organised enough prior to the trip then we would probably have taken him to a French hospital\medical centre ...
He's really struggling with breathing and he's not really had a proper feed in almost a week (the "bad" day he didn't eat), likewise going for a wee.  Oops.  How this is manifest is that he now weighs less than he did at the start of September despite eating like a horse (as the photo below is manifest) prior to the illness: it was really quite remarkable how much "real" food he could get in!  We also get even less sleep than normal as his coughing wakes him.  Hopefully we only have another week of illness.  It's the coughing that's the distressing thing...
In different news, we're going to Bristol tomorrow for the measurement of his new helmet.  Not quite sure how he's going to wear his dragon hat until the helmet comes off!

"See, not only can I get two spoons in my mouth, but I can spread food everywhere too!"

"Mummy! Look at me!"

Spot the knitted wellingtons ...

Thursday - 04Oct12
Hmm.
Below is an image of Dylan's head with a some lines and an ellipse overlaid onto it.

The solid red lines define the major and minor axis of the ellipse (or should do).  In Dylans' case the horizontal line should be longer than the vertical line, but more importantly the horizontal line should in fact be horizontal.  This means that glasses are going to be a pain to fit (and yes, he's going to be wearing them given both his parents did from an early age).  The dotted lines show the asymmetry: the line from top left to bottom right is clearly longer than the line from top right to bottom left.  The blue dotted ellipse is an example ellipse to show where Dylan doens't quite fit into the "normal" head category.  The ratio here (of horizontal distance to vertical) is about 73%.  We've not had much luck in fitting a 102% ellipse to any photo of Dylan's head we've taken in the last few days.  Clearly we're missing something (ok so I could set the tripod up to ensure a genuine vertical lookdown angle but then we'd need to fix Dylan somehow... any tips on how to stop a 7 month old from wriggling?!).   There is an element that the whole point is that the ellipse is shortened so a little tricky to generate but that is not the whole problem here.

 However, this website allows you to upload photos of your childs head and you can fit example head shapes to determine any deformity.  These results roughly correspond to what we've been given.

The following websites are quite good for describing the measurements that are used in head deformity. Plagiocephaly is here, and bracycephaly is here (pdf file).

Dylan's flat (back of) head

Horace the bear.  Named after the story by Alice M Coates (pub.1937)
The don't write stories like that anymore!  A gem.

Tuesday - 02Oct12
Head shape.  Decisions, descisons.  Although as has been said at least once too us, this isn't anything like as important as previous ones have been about his future!

The issue (or not) is that because he was doing zilch for the first two months other than lying on his back and learning to breathe he has developed a very flat head (brachycephaly).  He also developed a preferential head turn so the his head is non-symmetric (plagiocephaly).  The diagram below shows a rough picture of a "normal" head and the measurements taken.

A "normal" head and the measurements used

 So depending on when you were born the ratio a:b should be either around 78% if you were born before the back to sleep campaign and 89% if you were born after.  Anything in the mid-90's or above could be considered in the extreme category.  Dylan's is 102%.  Yes, his head is square.    The picture below shows how Dylan's head compares with "normality".

How Dylan compares to normality.  Except of course, it's flat at the bottom, more oblate spheriod, than ellipsoidal
Might try and re-draw this.  Anyone know the equation for a flattened ellipse?!

The other measurement is whether the distance c equals the distance d.  Anything within a tolerance of around 6mm can be considered normal.  For Dylan, this value is 18mm.

An option open to us is to fit him with a helmet.  What this does is it has space where the head needs to grow, and none where it's grown enough already thankyou very much.  The helmet is in two parts, a polymer inside and a fibre-glass shell (to make it look pretty).  The internal polymer mould of the helmet is created from a 3D model of the head which is generated using a laser scanner (geek-hat on: would using photometric stereo generate an equivalently accurate model at a lower price...).  As the head expands to fill the gaps, bits of the polymer are shaved off in the appropriate place leaving (after 3 to 6 months, maybe more) a more symmetrical "normal"-shaped head.

Does it work?  Well.  There's a question.  It can do.  It will depend on the age of the child - the plates in the skull must be still mobile - and the severity of the deformity.
What happens if nothing is done?  Assuming that the child is moving around and not (still) lying on his back and staring at the ceiling, then the skull should grow symmetrically.  What this will mean when he is older is unknown.  There are potentially a raft of medical problems from the more serious (jaw/teeth/hearing issues) to the mundane (glasses\ bike helmets not fitting) as well as perhaps an increased chance of bullying.

The sticking point?  There is no proof it works.  There are no randomised control studies.  Another interesting point is who has picked the numbers that determine whether something is considered "severe"?  How have any of the numbers been determined.  And while the helmets have limited effect on the child, the parents suffer.  It's hard to get a proper cuddle from them for a start.  The helmets are worn nearly 24hrs a day for a period of months.  Which is going to be hard-work.
 
Don't get me wrong, Dylan has an incredibly odd-shaped head that will (probably) grow symmetrically from now on unless we do something about it.  But will that matter?  18mm difference in symmetry in a baby's head compares to what in an adults? (that's in tomorrow's update!)

We could just leave it and he joins the 4% of children up to the age of 4 who have head deformities. 


Sunday - 30Sep12
Well, we made it to France although Dylan wasn't terribly happy about being in the car seat for hours and hours.  Or at least that's what it felt like!  Today we went into the forest to go climbing.  Yay!

Dylan is developing well, today he rolled over onto his back unaided: he hasn't quite mastered the art of rolling onto his front and he still hates tummy time.  He certainly doesn't give the impression of anyone who's going to be crawling soon.  Which is good given the state of the house made only marginally worse by the builders (who are ace).  We're probably going to put him in a helmet for "some time".  This will sort his head shape out.  Probably.  Certainly more likely than doing nothing.  I will attempt to explain with diagrams and photos over the next few days the problem and why we're going with this plan (rather than doing nothing).

Dylan decides it's his turn to drive ...

Dad & Dylan off to the crag in the borrowed chariot
(thanks Huw and Becky!)

Dylan learning the art of the mantleshelf

Dylan's Dad's Ride - The Aftermath

The Prequel
We thought we were being organised: all the cakes had been made Thursday night (porter cake, chocolate and raspberry brownies and a bakewell tart), I'd even arranged piles of "stuff" ready to be put into bags and boxes as required so that we could have a Friday morning nicely relaxed whilst packing things into the car so that we could leave on time to take Dylan for his first swimming lesson before heading North.

Dylan on the other hand decided that Friday morning was the best time for a meltdown which meant that one of us was occupied with him whilst the other packed and swapping roles where required.  It wasn't a relaxing morning and we didn't leave on time.  And we forgot things.  Nothing too important, but still.  Dylan did get to (most) of his swimming lesson however and seemed to enjoy it.  Which is a good thing as he's got another one next Friday!

We all know it, but motorways suck on a Friday evening.  Meh. Arrived late at the BTW's, ate late and went to bed late.  Not a great way to prepare for two long days of riding a bike!

Saturday - 08Sep12
We were reasonably organised in the morning, bikes ready, cars packed as much as they needed to be good to go.. and then I decided that clearly we weren't having enough fun so I contrived to drop a set of keys down a drain hole (the ones in the side of the road covering where the rain water gets collected).  Quite an important set of keys: ones needed to attach the bike rack to the car and all the bike lock keys.  The drain was reasonably horrible, backed up with all sort of nasties and (full) dog poo bags.  Yay.  A stick with a hook was quickly created using bamboo and a coat hanger but all that could be found were leaves and poo.  The BTW's hubby (Rich) volunteered and groped around in the bottom and found  them.  He then put his arm in the disenfectant...  As that had been so quickly dealt with I then managed to mislay the bike computer.  Again not normally a disaster, except this had the directions in it...

Ready to leave.  Finally.

After all that it was quite a relief to leave.   Not much to say about the ride to be fair: split into three sections (New Mills to Leek, Leek to Eccleshall, Eccleshall to Coalport) with cake acting as the demarcation lines.  Of the sections the first is the hardest due to the hills, the second is the busiest (A520 for most of it) and the third is the one to get lost on!  But the sun was shining, it was nicely warm and there was more cake than I'd seen in a long time and when the roads were quiet - especially on the singletrack roads in the third section - it was really very pleasant indeed.

At each of the stops the Mother and the BTW were there making sure we were drinking enough and feeding us cake as well as mugging passers-by for cash for the charity boxes!


Sunday - 09Sep12
An earlier start than the Saturday was required due to the distance involved.  Like the previous day, there was early morning mist which was still clearing by the time we left just after 8am.  The first part of the ride was giving me a little bit of concern as it doesn't really appear on the map.  As it turned out it's a cycle path which is all very nice and then the tarmac stopped.  Riding on gravel\dirt tracks isn't too bad but not really what you want when you're running tyres at 120psi at 20mph.  It gets a little bouncy\twitchy.  Only one puncture: inevitably it was mine.  Still it was very pretty in the morning light with the mist boiling off the river in the sunshine.  That was the nice start to the day.

Early morning on the Coalport to Bridgnorth
Cyclepath\Dirt track

The rest of the morning was spent either going up hill or down it again.  There wasn't much that was flat between Bridgnorth and the first stop at the Cousins-in-Law at Bishops Frome.   Although the hills were smaller than the previous day, they were sharper.  It was a hard 40 miles.  The sun may have been shining but the wind had also increased and inevitably it was always a head-wind.  We also had another off-road section getting out of Bromyard.  It was probably a private road.  It was certainly a farm track as we rode through the farm and like everything that morning it was down and then back up again.  On a dirt track.  Need I say that comments were made?

After the first stop, the ride flattened out considerably which was a great relief certainly to Rich who has done the least cycling out of the three of us.  The first day's ride (67miles) had equalled the longest he'd ever done so to then have to go even further the next day was always going to hurt.  The only problem again was the traffic around Gloucester.  We stopped at Quedgely where we met Neil's brother Ian who joined us for the last section into Bristol... and 40-odd miles later and another stop at Thornbury (it's important to keep your energy levels up, besides we had all this cake to eat!) we arrived at St Michael's Hospital and the Ronald McDonald House.  Photos were taken and the cars were prepared for packing before getting some well-deserved food (and beer).  And then we had a minor problem concerning keys.  Specifically the set of keys required to attach the bike rack to the towbar on the car. 

Arriving at Ronald McDonald House. 
St Michaels is in the background

The car that already has a reasonable amount of kit in it including a pram, three people and a baby.  It transpires that it had been noted that the keys were attached to the main set of keys by a reasonably flimsy keyring in the morning by the Mother.  Who then forgot to do anything about that, which tends to happen when you have a grouchy baby to contened with.  They were no longer on the keyring at the first stop.  Oops.  So there we were, tired after a long two days in the saddle having to pack a car with all this kit, two bikes, a push chair and the s****ing bike rack so that three adults and a baby could also get in and head to Taunton.  It did all go in.  Just.

Clearly, the moral of the story is that bike racks are evil and that bikes should always travel within the vehicle.  And a Ford Focus estate is evidently some sort of Tardis.



The Numbers
Total Distance:             170 miles
Total Ascent:                2500 meters ('ish)
Max Speed (by me):     41.6mph (bit disappointed at that - was hoping for 50)

Money Raised Online:  £2827 (so far - donations accepted for another couple of weeks)
Money Raised Offline: £580 (doesn't include collection boxes)

We should raise about £3500 pounds in total.  Which is fantastic.



The Riders
Dylan's Dad
Rich
Neil
Ian (from Quedgley)


The Support Crew
Dylan
The Mother
The BTW


The Cakes
Bakewell Tart
Blueberry Blondies
Chocolate and Raspberry Brownies
Mint Chocolate Chip Cookies
Porter Cake
Spiced Pound Loaf


Thanks to:
Everyone who has made a donation.  The ride has been an enormous success and it's all down to your generosity.
The Cousins-in-Law who welcomed us at Bishops Frome
The Co-Op at Leek who let us stop there and collect money from passers-by.
The Kings Arms at Eccleshall
The Haywain at Quedgely
The Anchor at Thornbury

Photos
There is a small photo collection available here