Dylan Henry Jones - Month 11

 Saturday - 26Jan13

"can I go home now please?"

 Friday - 25Jan13
 Apologies for the silence, I was in hospital full-time from Wednesday as the Mother had to be away for a few days.

We're still there (in hospital).  Slowly slowly does the ventilation support come down.  Yesterday (Thursday) he managed about 4 hours without any support and that was his limit.  He is now on a different ventilation support: we've moved from vapourtherm to lo-flo.  The difference is twofold; vapourtherm provides oxygenated moist air at pressure and lolo-flo just provides the oxygen content at atmosphere.  The advantage of lo-flo in this case is that weaning him off support can be done more slowly (in terms of percentage of oxygen-enriched air) rather than more sharp steps as vapourtherm would be able to provide.  A disadvantage is that it's dry air so it could dry up his airways and so require nebulisers.  We shall see.

Today though he seemed - in between bouts of whinging - much more alert, wanting to explore (escape) and play.  He's also managed to learn new tricks whilst inside.  He's rolling now in both directions and also choosing to sleep on his right which is different.  He's always preferred leftwards.  We've also been teaching him how to clap and wave.  No success with those just yet.

Hopefully we'll be out over the weekend.  The criteria is probably a night without support which should happen Saturday night, given he's eating most of what we give him (provided he's not having a coughing fit) and the coughing isn't causing him to vomit all back up again either.  Which given that solid food is given to him whilst he's sat on your lap is a real bonus.

A cardiac appointment was arranged for Dylan as he was in.  There was meant to be an appointment in Bristol before Christmas as a follow to the scans in July.  This has been post-poned until March.  So this appointment may take the place of the scan in March.  We've not had the results yet, so we shall see.  The scans are looking partly for evidence of any coarctation but also pulmonary hypertension but also anything else that looks "wrong".  Other than the lack of lung.  He's also had further snot tests done - we've not had the results from that back either.  We know he's not RSV positive (that was tested earlier in the week) but there may be other nasties that caused this particular bug.  There's also interest in making sure that there's nothing underlying in the cause of two (well three including the episode in France) incidents of bronchiolitis in fairly quick succession.  Hopefully not.


Monday - 21Jan13
... and we're back in hospital.
Ho hum.  Dylan has had a long-standing snuffle which decided now was the time to eveolve into something more creative.  A result of that was him turning down solids on Saturday (after a few cough-cough-vomit episodes) and then liquid on Sunday.  So we took him to hospital with a respiratory rate ranging between 60 and 80 and a few hours later he was on vapourtherm (oxygen support).  Which worked intermittantly.  By this morning he was irritiable.  So he got some drugs (calpol abd brufen) and some food.  Which he kept down.  So he got some more an hour later.  Today he's had about 200ml of milk and two sachets of food.  Probably about half of his normal.

So he's currently on a reasonably high level of ventilatory support, but he is eating and mostly keeping it down.  Who knows how long we'll be in for, it will depend on how quickly he can remove his need for oxygen supplement.


Thursday - 17Jan13
Wow.  Hurrah for the power of high-calorie formula.  Having fallen off his weight curve (0.4 centile) late last year, he's managed to get back onto it within a fortnight.  We thought he was looking plumper and heavier and we were right.  He's put on about a pound.  He's now almost 15 pounds.  Hurrah!

Other than that things are progressing.  He's no longer relaint on the Mother.  The Mothers' body working for once with perfect timing decided to stop producing milk just before her birthday allowing her a dairy-full and alcoholic-fuelled birthday celebration.  Many thanks to all those who helped with that both in taking her out and also with Dylan-sitting.  Very much appreciated.


Monday - 31Dec12
Well, I wish I'd only put on 3 oz over the festive period!
But really, that's not good enough from the lad frankly.  There are mitigating circumstances: he was ill around Christmas.  That's a new "ill" rather than recovery from the last "ill".  After all the fuss we made in making sure that family was all disease free, we end up bringing our own set of viruses.  Sorry!  So Dylan had a fever and has been generally under the weather since then, and then yesterday he came down with a cold verging on bronchiolitis or similar.  He's got a hacking cough and vomiting phlegm which is as far as our expertise goes.  On the plus side he was still eating and drinking so we didn't take him to hospital and actually today he seems much brighter.  Which is good.  New Years Eve in hospital would be tedious.

We have also installed him into his "room" and more importantly his new bed.  It feels really odd as we still have his old cot in our room, but he was growing out of that it.  It also means we probably all sleep a little better which can only be a good thing.

Dylan Henry Jones - Month 10

Sunday - 23Dec12
Dylan has a tooth! Possibly two.  It's hard to tell with a wriggling 10 month old.  It does however explain the hour of screaming we had the other night.  This was only halted after application of some gum painkiller.  Of course, the problem again with wriggling babies who are screaming, the actual application part of the painkiller (rubbed into the gums) is a little tricky which took at least two goes.  So maybe he stopped screaming because we'd anaesthetised his whole head rather than just the gums...

Other than that, he's still not fully recovered so is still a bit wheezy at times and his appetite whilst good is not quite back to what it was (or we think it was given we can't remember yesterday let alone last month!).  Custard and blancmange are the new favoured foods and are also about the only way we can get milk that isn't from the Mother into him.  But he is very much happy in himself - the rest will get there eventually - and most of the time is a very cheery soul interested in picking things up and putting them down again.  Also causing vast amounts of carnage at every given opportunity.  Which is exactly as is should be.

Merry Christmas to all and wishing everyone the very best for 2013.  Thankyou all very much for everything.

Dylan says "Merry Christmas and a Happy 2013!"

Thursday - 20Dec12
On the positive side, Dylan has gained weight since he came out of hospital and his head is getting more "normal".  So Dylan is again weighing more than 13pounds...  Less ideal is that he's actually only put on 4oz in 9 days.  Which isn't great.  And his head circumference has only grown by a millimetre (or thereabouts) in a month.

But he remains a bouncy chatty little boy who likes eating (most of the time although days are clearly colour co-ordinated and so occasionally he decides he won't eat anything red...).  Drinking on the other hand is rapidly becoming a lost art.  Except from the Mother.  Which is a bore.  As is quarantine.  Oh well!


Monday - 17Dec12
 Well, we've been out of hospital a week now and so far so good.  I think.  Dylan's doing well and remaining healthy.  He is eating reasonably well, but he's not drinking much at all which is a little bit of a worry.  But he's lively and not too grouchy most of the time.  Unlike his parents!  Probably bored however.  Being confined to barracks is dull for a sociable little boy.  It also makes simple things like going to the shops a bit more complicated given we're not allowed to take him.  His various medical appointments also need some thinking about given that appointment rooms really are a place where he'll catch something and are therefore somewhere to be avoided.  Oh well!
 

Practice bouncing on his new bed.  Not sure when
he'll actually get put in it.  Possibly when there's a roof
over it and we've managed to clear some space in his room!

The local pub (The White Horse) has a table top sale which in December they asked us if they coul d raise money for CDH UK.  Because Dylan was in hospital the Mother was actually able to pop in for a bit as originally we'd planned to be away.  Anyway.  They raised £100 for CDH UK through raffle ticket sales and renting out table space.  We picked this up last night and will send off to the treasurer.  Very grateful and very impressed with the amount raised.

 Monday - 10Dec12
... and he's home.  With no tubes. 
His feeding is still off so he's getting weighed in a week and if he hasn't put weight on then there is talk of re-introducing the NG tube.  He should be getting at least 450calories per day just for "ticking over".

It's also been strongly advised that we shut-up shop for a few months in order to reduce the risk of infection to Dylan.  This includes not going shopping with him.  Not totally happy about that as I think we'll all go slightly insane.  Dylan certainly likes being out and about and gets ratty if kept indoors without (additional) company.  We shall see.


Purely for interest, below is a video of Dylan's chest when he was really struggling with the bronchiolitis.  Because we'd been seeing it for a few days prior to admission into hospital we were used to seeing it, but the nurses were reasonably horrified.  Should stress, this isn't his normal breathing routine (although his normal isn't "normal"...).

Sunday - 09Dec12

Do I need to add anything more?

 Dylan came off ventilatory support early in the morning and hasn't really needed any oxygen since.  He's taking more from the bottle but can't really handle the volume of 3-hourly feeds yet so he's still a little vomity.


Saturday -  08Dec12
 Not very much happened on Thursday and Friday, the numbers on the ventilation continued to drop very slowly and he became more brighter, more interested and certainly Friday evening he was wanting and able to be sat up sometimes without support for up to about an hour.

Today was a real breakthrough as he decided that maybe food through the mouth was perhaps a good thing.  He managed 4 bottle feeds throughout the day.  He's only getting small amounts (54ml) every two hours and throughout the day his aspirates were low (ie he's digesting his food at a reasonable rate).  His ventilation support is minimal, but required.  Hopefully over the next couple of days this can be removed and we can up the volumns on his feed to more sensible amounts so that we can look at feeding every three hours.

I'll post photos up tomorrow as they're all on the Mother's phone...



Wednesday - 05Dec12
 Another day of progress.  The pressure and the level of oxygen both dropped off again today.  The larger issue now is that of feeding.  His rate of digestion is quite slow and at the moment he's refusing all forms of eating other than direct access (NG tube) and that with small amounts (30ml) and at regular intervals.  Which isn't going to get us home any quicker!

On the plus side, he's decided on and received his Christmas presents.  Clearly a set of brightly coloured ECG leads and the plunger end of a syringe are in fact all a little boy wants.  He's definitely more alert even than yesterday and we spent some time with him trying to get him to sit-up.  Obviously his physical development has gone marginally backwards.  Before his illness he favoured his left hand, for the last week or so that's been wrapped in bandages so he's been unable to use it and so no favours the right.  Well, we thought it interesting...

And he's causing chaos and mayhem having pulled out one NG tube whilst smiling sweetly at the nurses, trying very hard to remove the ventilator and generally holding onto anything within arms reach.

 Tuesday - 04Dec12
I think it can be said that Dylan is on the mend.  Both the pressure of the ventilation and the oxygen levels have both dropped marginally and he now has two hands with which to cause chaos and mayhem.  He's already destroyed two ECG leads today.  Mostly though, he's just brighter, more interested in things. And smiling.

He's still a tired little munchkin, being fed every hour on the proviso that he's digesting food and on ventilatory support but definitely on the road to recovery.

Thank you all for all the presents, kind words, thoughts, sacrificed offerings to the gods, erection of shelves and manufacture of Christmas puddings.  All very much appreciated.


Monday - 03Dec12
No real changes.  The (percentage) oxygen levels have been dropped to 36% (from 45) from (very) early morning through to late afternoon and he's mostly tolerated those.  The pressures haven't changed.  He had some physio in the morning to loosen up the contents of his lungs and we have been moving his position every hour or so.  He has also got put into "the chair".  See picture below!  To allow him to get some time sitting upright which again is good for helping to loosen up his lungs.

Still being a grouchy little b****r, which is understandable in the circumstances but some more smiles would be nice!  None since Saturday.  He has managed to pull off some of the sensors and tomorrow when the bandage comes off his left hand then we really will be in trouble!

... in "the chair"

 
Sunday - 02Dec12
Another quiet'ish day.  Hurrah!
In his awake moments he's getting more irritated with the situation which although a good sign, means that vigilence is required to stop him pulling anything important out.  Sedatives perhaps?!

His feeding\stomach contents are still not quite right so occasionally misses out on the hourly feeds and they have tried playing with the oxygen numbers reducing the percentage to 40% (from 45% - the pressure will probably be the last thing to be reduced as that's helping keep his lungs inflated) - which kind of worked although his heart rate was higher for several hours afterwards averaging around 140 rather than 115-120'ish.  He didn't have any physio today, but he gets turned to each side for an hour at a time and that seems to move lung nastiness around quite effectively.  Or so it sounds from the coughing that usually follows most movement...

But generally, another steady day, no great improvments, but definitely not any backward steps.

 
Saturday - 01Dec12
I think the word of the day is "phew".
As it turned out he ended up having a blood-gas done late last night and then again this morning.  All of them (four in total) showing roughly the same sort of numbers.  Whilst the numbers may be bad, they are at least stable and it is likely that Dylan is used to this.  When he is better, we will get a blood-gas done so that we have a rough idea of what we to expect next time he comes in.  Which he will.  The bronchiolitis has made the lungs hyper-sensitive so the next time he gets a cold or similar it will hit his lungs harder than it might otherwise have done.  There is nothing to be done about this, we were expecting a "difficult" winter season!

So, today has actually been a good day.  We got smiles!  First smiles in over a week.  The threat of the I-word has receded as he is clearly more alert (when he's awake).  We are faced with the bigger problem of trying to stop him from removing his ventilator or NG tube which, whilst irritating, is a good place to be.  Clearly he is on the mend, even if is still on 45% oxygen.



Friday - 30Nov12

<insert litany of swear words here>

No,  it's not really that bad.  Hopefully.

Overnight he was relatively stable.  This morning however, he had a three hour coughing period where he was struggling with his breathing and generally feeling (more) rubbish.  After a consultant review it was decided to do a blood-gas.  This - for those at the back not paying attention over the last nine months - analyses a blood sample for the composition of gases and provides a good indication of the lung function (over and above the numbers that he normally generates).  Yes, it's back to doing heel pricks again.  Anyway, the results were pretty poor.  In particular the level of carbon dioxide was high and the level of oxygen low comparatively.  What this means is that there is a build up of carbon dioxide in his lungs.  Which is bad, nominally the lungs should push this out as you exhale.  I use the word nominally in that we don't know what Dylan's baseline figures are so we don't know how bad the numbers are related to him rather than what they should be.

Anyway, because of this set of poor numbers, the "I" word has been mentioned: intubation.  This would also mean that he would be transferred to Bristol purely for technology reasons; Taunton doesn't provide care for incubated babies.

Four hours after the first blood-gas he had a second.  The period prior to the second test he was really pretty calm so we had hoped he would have a much better test result.  It was the same as the first.  Which isn't bad as it could be, he is clearly stable but there is concern that he's going to get worse.  So there will be another blood gas done in the morning, unless he gets into an increased level of respiratory distress.

He has returned to hourly feeds as it is felt that this will put less pressure on his lungs, but his stomach is still full of nasties that shouldn't really be there.  It may be that he will have to be food free for 24hours in order to give his guts a break.  On the plus side, he hasn't lost anymore weight which we really are quite astounded by.  His temperature has also been stable for at least 36hours.


Thursday - 29Nov12v
Strange sort of day.  He had a reasonable night although he did get more treatment than he might have done if he'd of had the same set of medics looking after him.  Either way he's progressing very slowly and this is causing some concern to the medical staff about the length of time that he can continue to struggle to breathe.  Struggle might be the wrong term, but breathing is hard work for him and has been for almost a week now.  And he's in almost 50% oxygen and not saturating which is not ideal.  Some of that is due to the junk in his lungs which may be remnants of the bonchiolitis but may be an additional (bacterial) infection.

So.  He had some physio this morning - not sure of the efficacy of it although they did extract some lovely thick mucus which has been sent off for analysis- his saturations seemed worse after they'd finished but the big change is he's now out of the box.  He's on the next level of ventilation which is called "vapourtherm".  This is a bit like the hi-flo ventilation that he was on very briefly at St Michaels.  Apparently no one knows why it works, but it does.  Essentially it's pressurised oxygen enriched air which is warm and wet.  It uses the same mask as hi-flo does.  We were dubious given that the hi-flo mask lasted about 5 minutes but so far so good.  If this doesn't do the trick then he'll be put on CPAP.  An advantage is that his level of care has increased; he's now on HDU ( high dependency unit ) so there's one nurse for both patients in HDU and they are there 24hours. A counter to this is that the Mother can't sleep next to him. This might mean she'll get some rest at last.

Other than that his temperature has remained at the right level for almost a day now and the "numbers" (heart rate, breathing rate, saturation levels) are gradually dropping.  Also this morning for the first time, his stomach was mostly empty prior to a feed which means that he's at least digesting something!  His intake of calpol and brufen have also reduced.

"No, I am not having a good time..."

Wednesday - 28Nov12
A case of one in and one out and more waiting in the wings. It's certainly the season for RSV!

Dylan has plateau'd. He's not getting particularly better, but then he's not getting any worse either.  They took an x-ray which found his lungs are full of junk.   So he's now on antibiotics.  On the plus side, he has at least grown some veins through which they can supply the drugs.

The bruised boxer
The left hand is bandaged because of the canula,
the right has a glove on it to stop him from pulling
the NG tube out and he's not wearing any clothes
because his head is in a greenhouse

Tuesday - 27Nov12
And then there were three!  Three little babies[1] all with bronchiolitis caused by RSV.  Poor things.
Dylan had a much quieter night and then decided that he wasn't having enough fun so increased his temperature to 39 degrees even after Calpol.  This means his heart rate also goes through the roof and his work of breathing again is strained.  But mostly today has been a quiet day interspersed with temperature spikes and the occasional little vomit.  Oh and when his saturations plummeted because the NHS ran out of oxygen briefly (well, at Dylan's bed space anyway).

By quiet we mean that he's still on 40% oxygen and being fed through a tube.

[1] interesting(?!) to note that all three babies weigh roughly the same amount but are of very differing ages: 7 weeks, 5 months and 9 months. The weight? About 13 pounds.


Monday - 26Nov12
Well, that was reasonably horrid.
He didn't have a great night and from about 6am through to 8pm he was awake and unimpressed with life in general.  He's currently on about 45% oxygen and is getting calpol and brufen as medication.  He's still in the greenhouse which makes it really difficult to give him a cuddle.  Even with the oxygen boost his saturation levels aren't great and his heart rate is quite tachycardic ranging between 160 and 190bpm.

RSV (Respiratory Syncytial Virus) is the cause of the bronchiolitis.  That was determined using the nose swab.  And he's not the only one suffering.  He's been moved into a room with another poorly boy with the same thing - or rather two poorly boys have been moved into a new room - although the other little lad is closer to going home than Dylan is.

On the plus side, he didn't get any worse.

Dylan Henry Jones - Month 9

Sunday - 25Nov12
 The x-ray came back and that was ok.  Overnight they put in an NG tube and tried hourly feeds which he didn't really tolerate so they've gone to two-hourly feeds.  They also provided a box.  This just provides an oxygen enriched atmosphere in a more manageable fashion than holding a tube in front of his face.  He needs the oxygen as his saturation levels plummet without it.  The oxygen (and the box) ends up a little like a greenhouse which makes it easier for him to cough and thus more comfortable.

Poorly boy.  The large tube is providing oxygen enriched air.
The box works better (at providing a more oxygen rich atmosphere)

By the afternoon he was worse: just the manner of his breathing, much more laboured and his insides aren't work too well either.  Diarrhea is not something we really need right now.  He also doesn't seem to be digesting all his feed.  Of the 50ml he gets he's only digested about 30ml of that before the next feed so he might get something (domperidone possibly) for that.  In the morning (Monday) they will also take samples from the back of his nose to make sure he hasn't got anything (else\in addition) nasty in the way of bugs that has resulted in two bouts bronchiolitis in quick succession.

In the box, no one can hear you scream...
Sad but true.  He's not got the loudest cry but at the moment it's
quite pitiful and it can be quite hard to make out over the oxygen
generator and the ward

Saturday - 24Nov12
Oops.  He's no longer over 13lb. Pants.  The problem with the cough was that it made him throw up.  Which means that he's not eaten as much as he would have done.   He's thrown up over half of his food in the last 24 hours.  So he's lost about half a pound since Tuesday although only really been poorly since Thursday.  Importantly the cough has progressed into bronchiolitis.  So it's Saturday night and we're in hospital! 

He's just (20:30) had a chest x-ray and we're waiting for the results from that.  But he's got a fever, a horrible cough which is more frequent than normal, an increased respiratory rate (it was running at about 90 per minute last night), poor feeding and poor bladder output, and lethargic.  He's not a happy little boy at all.  The plan as far as we know is to keep him in overnight, possibly giving him some oxygen as his saturations are below what they should be and they might put an NG tube into him so that he gets at least some calories today.


Thursday - 22Nov12
Well, Dylan has (just) made it over the 13lb barrier.  This may well be due to the embarrasment of weighing less than a 7week old...  That's not to say that he's not eating.  He definitely has a Jones appetite and attitude to food.  If it looks like it might be edible he'll give it a go, books, doors, fluffy bunnies, whatever.  Except water.  Still.

The helmet appears to be doing its job and they seem pleased with the progress (and change) that it's making.  In the first week of having it he got a pressure sore on the side of his head which meant that we had to cut back the amount of time that he was wearing it for.  That's now mostly healed with time and some minor adjustments to the inside of the helmet.  In terms of head shape, the difference in the diagonals has now dropped from 18mm to 12mm so it's becoming more symmetrical and his head is now longer than it is wider with the ratio dropping to below 1 ( 0.97 compared to 1.04).  All good stuff.

Other than that he's mostly been whingey!  Some of that may have to do with yet another cold and getting the flu vaccine.  But he has now found his feet...

 

Monday - 05Nov12
Just a very quick message and enormous thank-you to everyone who has donated to the Dylan's Dad's Ride.  We have raised a total of £5696 to be split between CDH UK and Ronald McDonald House (Bristol).  A truly splendid effort.
 

Monday - 29Oct12
Dylan is now eight months old.  Hurrah!!
He seems to be reasonably happy in his helmet - and we're used to it too: it seems odd when he's not wearing it.  Strange considering it's only been a few days and we're still rubbish at putting it on and taking it off.  Today is the first day that it'll be on all day.

Like all babies, Dylan has a firm view on what he wants and doesn't.  He doens't like water, but he will have some of what you're having thankyou very much!

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

Dylan Henry Jones - Month 7

 Tuesday - 18Sep12

Dylan can now feed himself...

Dylan's caught a cold.  He really does have a horrific hacking cough and is really snuffly.   On the plus side he's tolerating it reasonably well so far.  Just a baby with a cold and a 60-a-day habit.  We'll probably see if we can get anything for the cough before he removes what lungs he has left.  Other than that he's getting really close to being able to properly stand although no where near being able to crawl.  He looks so pleased with himself when he's on his feet.  He's desperately trying to learn how to turn over but usually gets stuck halfway... and he's sleeping more of the night. Yes!!! Hurrah!

The cat on the otherhand has found a delightful new bed.  Small and cosy with only a little person in it who doesn't kick quite as hard as the big people.  We're not too happy at this latest development but not quite sure what to do about it.  The cat covers (for cot beds) don't have the best reviews and seem to end up being a cat hammock... and the cat - so far - is being very good and getting in the cot very carefully and always at the foot end

 Monday - 10Sep12
Just a very quick note to say that Dylan's Dad's Ride was a success despite a small amount of carnage mostly involving keys.  The route turned out to be pretty good with only a couple of off-road sections on the Sunday... and everyone completed and we've a goodly sum for both CDH UK and the Ronald McDonald House (Bristol).  Not sure of the exact totals as there are donations outside of the justgiving and mycharity sites but it should be over three thousand in total.

When I have a chance (hopefully this evening) I will write something more coherent with photos!
Thanks to everyone who helped, sponsored or came along for the ride.  All very much appreciated and helped make the event a success.


Saturday - 08Sep12
We should be heading off in the next hour or so (ie by 9am).  First stop is at the Co-Op in Leek (the one on Portland Street North) and then the Kings Arms at Eccleshall.  Should be arriving in Leek between 10:30 and 11:30 and then 12:30 to 13:30 at Eccleshall.

We have cake.  Lots of cake


 Thursday - 6thSep12
Yesterday was a busy day.  We saw the consultant paediatrician and the physiotherapist in the morning and then the GP in the afternoon and the day before that he had an x-ray.

The x-ray was (mostly) to check whether the patch was still holding.  Which it is.  Hurrah!  Dylan has a good right lung and maybe half a left lung.  When he was in St Michaels, the good bit of the left lung was at the top, now it's at the bottom.  Either way the lung is still inflated.

The consultant and the physio didn't really have that much to say.  They remain very pleased with his progress.  He does have a very flat head which concerns us mostly because getting a bike lid to fit will be hard.  The expectation is that it will sort itself out provided that Dylan spends little time on his back.  From now on that will be easier as he is sorting out his neck control allowing him to be sat up more and he's also tolerating being on his front more.  We are planning on going to see a specialist in Bristol who make helmets that forces the head to shape itself "properly".  An issue is that there is no evidence as to whether they make more of a difference than not having one.  Something we shall have to consider.  Other than that he has bath oil, moisturiser and steroid cream for his bad skin.  The Mother was considering going dairy free to see if that was a cause but since we've been given the steroid cream there's little point in trying that just yet.  The Mother is concerned that maybe she'll need to be dairy free in France... 

Dylan meets his (slightly) younger cousin Matti for the first time

 And yes, sleep is still a myth.

Dylan's food exploration is coming on.  He wasn't that impressed by spinach altho' given the colour of it he was probably thinking "I'm sure I've seen that come out the other end"...


 Almost all sorted for the ride at the weekend.  The weather is looking fantastic (altho' probably too hot for a pasty-white Welsh boy).  Just some minor last miute things to sort out - like vast quantities of cake!  All the details of the ride are here  Nothing has particularly changed and when we're happy with the stops I'll put the details onto the blog should anyone wish to come out and laugh at, sorry, support us.

Large and extra-ordinary thank-yous to:

•  all of those who have been so generous in sponsoring us so far we're heading for the 3k mark so far which is really fabulous, we've had some outstanding contributions
• to the BTB who has been making knitted monkeys for all and sundry raising over 200pounds.  She is slightly concerned she'll still be knitting them on her death bed mind...  and also for all the work she (and her Hubby) have done.
• And finally to Claire at SmallThings for the Dylan Dragon Hats for the "ride" team

Monday - 27Aug12
Yesterday, Dylan was six months old.  To celebrate Dylan had a banana, well some of a banana mashed up with some fortified milk.  He clearly thought this was a most splendid thing, far better than mashed celeriac or yukky broccoli.  Eagerly grabbing the spoon and shovelling it into a wide-open mouth in typical "Jones is hungry" mode.

Dylan Henry Jones - Month 6

Wednesday - 22Aug12
Hurrah! Dylan now has a passport.  His first climbing trip is on the horizon! Next month in fact.  Hurrah and hurrumble! I hope the French are prepared.  I am outraged at the fact that not only does he need a passport at the age of six months for which we need to pay it also lasts 5 years (which given the amount children do change in that time seems a bit daft).  And the usual strict photo rules apply.  On the plus side at least his photo will probably still be recognisably him in five years even though it is a bit Uncle Fester-y (no neck and no hair)...

 
Tuesday - 21Aug12
Well, the good news is that Dylan is clearly taking to the addition of fortified milk to his diet like the proverbial duck as he's gained almost a pound of weight in a fortnight.  He's now at 12lb 2 (or about 5.6kg).  This is quite re-assuring as his lack of weight gain over the previous month was causing us some concern.  The other bit of good news is that we've started introducing "real" food into his diet.  He's not really interested in picking food off a plate yet, but seems really quite keen on being spoon-fed pureed sweet potato.  Although occasionally he does think his supporting seat is better for chewing... Not sure what's on tonight's menu.  But he continues to do really well, he has Father's butterfly mind and so easily bored and gets grumpy when not entertained\interested.  He does like company (takes after his mother there then) and is mostly a cheery-smiley boy.  Which helps at three in the morning as he's clearly really pleased to see you and all you want to do is go back to bed.

On the downside: he's decided that sleep is overated and where once we could just about get a four hour break between putting him to bed and first night-time feed, that's now down to two hours.  He's also decided that nightime is really quite interesting and so won't go back to sleep after you've fed him either.  So about every two hours throughout the day he wants feeding, and overnight it may be an hour before he goes back to sleep again. We're on the fifth day of this and it's getting quite hardwork to remain cheerful and tolerant (well, as tolerant as I get).  Investers; now is the time to buy into coffee beans!  It probably doesn't help that he has a slight cold so breathing and eating are a bit more difficult than normal.  Hopefully once the cold has gone he'll go back to sleeping more.  Please.

The cat has also found the changing station and has decided that we're clearly very lovely owners to put in a nice high cat basket for him to sleep on.  Comfy too.  And if that's occupied, there's all these nice little baskets underneath just right for a curled up cat...

spot the cat...

Oh, completely forgot:  he's officially to big for the Moses basket and now has a (small) cot instead.  Big mistake was changing his nighttime routine AND his bed the same day.  No sleep that night!



Tuesday - 14Aug12
Olympic Trivia Fact #2: apparently the person who came sixteenth in the marathon on Sunday was also a CDH baby...

We went to see the hockey and the volleyball over the weekend.  Not sure whether Dylan enjoyed it but he was certainly surprisingly well behaved throughout.  Getting through security was made very easy as he's feeding from the Mother so no need to split food into 100ml pots!  We were very glad that we had bought ear defenders for Dylan as the volleyball (indoors and a bronze medal match) was loud with lots of enthusiastic Italians.  Dylan slept through it.

noise? what noise ...

Tuesday - 07Aug12
The interesting thing about having surgery is that things get moved around a bit.  Clearly the placement of our internal organs is like one of those puzzles where everything has to go back in just so otherwise you've got bits leftover.  Like the appendix.   Or maybe the heart isn't quite where you expect it to be...

It's blurred 'cos he won't stop wriggling...

We had the cardiac appointment  yesterday.  This was mostly to check whether there was in fact a coarctation of which there had been a worry in the pre-natal scans.  The problem with these early scans is that there was pressure on the heart from the abdominal contents which meant a proper view  couldn't be had.  He had another scan fairly early on - I think before his surgery - but there was too much fluid (in his body) and so again a real picture couldn't be obtained.  The consultant was running late so the initial review was pretty cursory prior to the actual scan.  Dylan's looking healthy, nice and pink with a good oxygen saturation and good steady heart rate.  We then had the echocardiogram scan and this showed some worry: an initial view that there was quite a severe narrowing of the (0.3mm as opposed to around 4mm).  It didn't help that Dylan is quite lively and doesn't really like being prodded and scanned.  Even when feeding.  Apparently babies are meant to be nice and relaxed when feeding (from mum).  Not this one.  He's a wriggler.  After about an hour and an initial talks of maybe if not surgery then certainly placement of a balloon to expand the narrowing, a clear view was found of the problem area.  And it's not really a problem.  It is slightly narrower than it should be but really nothing to worry about although we do have a follow-up appointment in four months.

The scans were in Bristol so whilst there we took the opportunity to go to St Michaels and Ronald McDonald to show-off Dylan and to say thank-you to all who have helped us.  These are in Fetal Medicine Unit, Maternity Unit, Neonatal Intensive Care and the Ronald McDonald House.  We didn't see everyone unfortunately: Prof. Soothill who was the consultant at FMU was out which was a shame.  We did see the midwife who delivered Dylan and she was really pleased to see him as was one of the nurses (the only who was available)  who looked after Dylan at NICU.  They don't often get to see what happens months down the line and how baby progresses - or in the case of the staff at Ronald McDonald they never see the children as they're always in hospital.

"... will you put that camera down!"

Saturday - 04Aug12
After admiring the facial hair of the male shotputters in yesterdays final, Olympc trivia fact #1 is that the shotput used weighs 7.5kg.  This is about 1.5 Dylan's.... Not sure he'd appreciate being manhandled by a large beardy man (as opposed to the scrawny occasionally beardy man who's his dad).   However he didn't actively object to being put into a trailer and dragged up and down hills in the rain by his dad.  Many thanks to the Hamblins for packing their trailor and dragging it down to Wales for us (well, me) to play with.  In fact so well did the experiment go, that there has been comment from the Mother that she may reverse her avowal to never cycle with a male member of the Jones family.  This is solely on the basis that I am loaded down with trailor and panniers.

For his month 5 birthday, we took him camping in Wales.  He didn't actively object to the experience! Although on the Sunday he did go through an eat-scream-sleep cycle that lasted into Monday which as many will atest too is tiring.

Following Dylan's lack of weight gain a fortnight ago, he's back on fortifier: this is added to his nightly bottle.  He's getting an extra 100calories a day from this.  Other than that things are progressing.  It's difficult to see how he changes on a daily basis.  We know he's getting bigger as he's growing out of clothes (and the Moses basket - finally!).  The Mothers parents visit about once a month and they assure us that there's something new each visit.  He's close to giggling, but not quite there yet and he's very good at grasping things but his arm co-ordination can be a bit lacking at times.  From a medical perspective we have a cardiac appointment in Bristol on Monday.  This is to check whether there is co-arctation in his heart or not.  The ultrasound scans were inconclusive and this is the first real opportunity to check.

The planning for the sponsored ride is getting there.  A new page (Dylan's Dad's Ride) on this blog is available here and this holds all the details and the sponsorship pages are available (one for CDH UK, the other for Ronald McDonald House (Bristol) ) are here:

www.mycharitypage.com/dylanjones (for CDH UK)

www.justgiving.com/dylanhenryjones (for Ronald McDonald House (Bristol))

Need to get some training in...

Dylan's Dad's Ride

What?!
 I - and at least one other - will be cycling from Manchester to Bristol in order to raise money for two of the charities that have helped enormously when Dylan was born.  These are Ronald McDonald House (Bristol) and CDH UK.  The reason for this particular journey is that this is the journey taken by us after the Mother's waters broke in Manchester two weeks earlier than her planned induction in Bristol. 

When
Weekend of the 8th Spetember 2012.

The Charities

The Ronald McDonald House Bristol ( http://www.rmhbristol.com/ )  is an independent charity which provides support and Home from Home accommodation, free of charge, to the families of critically ill children receiving care at the Bristol Royal Hospital for Children and St Michaels Hospital.  It opened its doors in November 2002 and accommodates over 600 families each year.  The house comprises of twenty one en suite bedrooms, three fully equipped kitchens, a dining room, a laundry room, two lounges, and a beautifully landscaped garden.  Running costs of £170,000.00 per year and a really small team of staff.  We were lucky enough to be able to stay here for the five weeks that Dylan was in NICU at St Michaels Hospital.

CDH UK  (http://cdhuk.co.uk )  was founded and registered with the Charity Commission in 2003

It was initially formed as a small support group, now its aims are

• To support families and their babies and children as effectively as we can
• To offer information, advice and news on all aspects of CDH
• To raise awareness of CDH and to educate the general public and medical profession
• To contribute where possible, and further study and research into better management and treatment of CDH and to assist in finding the cause and prevention of CDH

We have found them an extremely useful source of information and support from the time that Dylan was diagnosed (November 2011) up until the present day.  Whilst CDH is as common as Cystic Fibrosis (1 in 2500), there appears to be a lack of awareness and that there are procedures available that may increase child survival rate in severe cases.



The Route
The route of the sponsored ride has been defined.  The route is a total of about 170 miles spread over two days.  The overnight stop will be in Coalport rather than Bridgenorth.  Although Bridgenorth would have been preferred because of the strong links with the Mother's side of the family all their accomodation seems to have been taken. This may have something to do with the food festival in Ludlow that weekend. The split is roughly 67 miles the first day and 105 the second but more climbing on the first day.  There'll be two drinks\food stops each day.

Each days route can be found in more detail using the following links.

Garmin Connect - CDH Ride Day 1 
Garmin Connect - CDH Ride Day 2
So far there are two definites (including me) and a few maybes as well as a few volunteer support crew ...



Sponsorship
We have two charity pages ( one for each charity) for sponsorship.  These are:

www.mycharitypage.com/dylanjones (for CDH UK)

www.justgiving.com/dylanhenryjones (for Ronald McDonald House (Bristol))

Dylan at birth

With the support we have received from CDH UK and Ronald McDonald House (Bristol) as well as the superb work from the maternity unit and the Neonatal Intensive Care Unit (NICU) at St Michaels Hospital in Bristol along with medical care from Somerset NICU at Musgrove Park in Taunton and antenatal procedures at Kings College Hospital London we went from the top photo (Dylan getting paralysed, sedated and intubated at birth) to the bottom photo (Dylan tube and drug free) 5 months later.  The offering of sacrificial goats and chickens and prayers\thoughts from a vast collection of friends and family all helped too.

Dylan says "Thank you for all your support"