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.