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"