The downs and the ups….

After the ‘impressive’ pre Christmas downs, Jude is definitely on the up at the moment. It’s at these times that we realise how little opportunity he’s had over the 2 and a bit years of his life to get his teeth into….life. At the moment he’s physically well, no chest infections, coping with his reflux, not in any pain – generally OK all round. He’s tolerated his exercises, finding his hands again and we’ve found him a new ‘thing’.

Jude is tube fed but I’ve noticed that he was mimicking oral feeding when he’s being tube fed now so I got him this…

It’s called a Munchkin Feeder and we put a bit of food in it and Jude gets the taste but none of the choking risk.  Available from Amazon (US) – I got Jude’s from Asda.

Still no offers on our house, and the offer we made on the one we found hasn’t been responded to. The local council say we will probably need planning permission for Jude’s extension which is a little problem as we wouldn’t want to buy only to find we couldn’t do it. We can start by getting outline planning permission which will let us know if we definitely can’t do it.

Cadbury World

Despite the fact the Americans have taken over the world’s greatest chocolate company we took the boys to Cadbury World today while Jude had respite.

Cadbury World, chocolate heaven.  mmmmm

Jude had a good time too, he got Hydrotherapy and the sensory room and I made sure he got a chocolate button too. He seems to have pulled himself up again after the pre-Christmas traumas and is generally in a good mood and not getting himself into any trouble.

We have had some apparent interest in our house – someone’s been and had a look and come back. On Saturday, we found a house too……keep quiet on that one for a while.

MRI Report

Well I didn’t bother entering anything yesterday for a couple of reasons – one being felt a bit low and two I thought Ian may write something; and he is so more eloquent at these things.  He always seems to put in to words perfectly what I am thinking but am unable to put down on paper.

We saw Dr Philip yesterday, it was a routine appointment that had to be cancelled in December due to Jude being in Intensive Care. 

Dr Philip went through the mir report with us, he showed us the back of the brain, which is good, then the front which is ok if not a little small.  Then he showed us the left and right side of the brain which on the pictures seemed to be just dark.  He explained that there was total damage to these parts of his brain.  He also explained that it was very unusual for this sort of damage to occur on both sides and is often seen on one side but not both.  He explained that the brain had developed normally during pregnancy and the damage happened in the third trimester, and was caused by the oxygen supply to that part of the brain being starved.  That or, the possibility of the blood vessels being small short or weak.

I have long wanted Jude’s MRI explained to me in terms that I could understand and seeing the scan gave me this information.  However, seeing the information in cold black and white somehow made it real, concrete, permanent.  So yesterday for me was not that good a day for me. 

Dr Philip is very keen to try the Ketogenic diet as soon as we can, however we need the fundoplication doing ASAP as Jude is in a real bad state with reflux.

If that didn’t work (however it has a 40 – 50% success rate) there is an option to cut the chords in the brain that enable each side to ‘talk to each other’ what this would do it to stop a seizure spreading throughout the whole brain.  And I’m sure you can guess how this is done.

Also we are going to start trying some new drugs, one at a time, to see if we get any response.

Coupled with all of that information being taken on board in my own grey matter, had an email back from the owners of  the house we really loved and lost, saying that they were really sorry that they had had to accept another offer, but wished us all the best for the future.  I think that was the final straw for me.  Roll on good times, please.

7th January

Not my favourite day of the year.

Jude’s been sort of unwell – not really unwell but we’ve pretty much kept him on oxygen now for 3 or 4 days, just a little bit and he’s nowhere near where he was before Christmas and the doctor says his airways are clear. Still, been there done that and don’t fancy doing it again.

It’s been tough on Jude and his development has dropped back again – these repeated health problems have more impact on Jude’s progress than anything else, just when we see something significant it gets taken away again. All the exercises we’re meant to be doing he just won’t tolerate. It’s a real kick in the teeth.

And to top it all off, the house we wanted….looks like it’s been sold.

Grrr.

Happy New Year

Lots of people have said, may 2010 be a better year for you as 2009 hasn’t really been all that brilliant. Life is all about comparisons – yes there were times last year when things were pretty dire, however in 2009 we were able to go out together as a family, we drove, yes drove to Wales for a holiday, we went to Ireland – all of us. In 2008 Jude spent the majority of his time in pain mostly screaming and even a trip to school (approximately five minutes in the car) was a journey I dreaded doing. So all in all, looking at the positives 2009 wasn’t all that bad. 2010 I think will throw us different challenges in many ways. We are having to move (this in itself will undoubtedly be stressful) Jude has another operation to face and a new diet to trial, and on top of all of that Ian will be 40!

We took the decorations down today (well as it’s 4.00am technically yesterday) far earlier than we normally would, and I got so upset for that was the last time I would be doing that in my house, I stood at the sink in the morning preparing the vegetables for lunch looking out at my garden on new years day – for the last time, shedding a tear, how pathetic. It’s a good I have a streaming cold as no one could tell the difference.

My nana always used to say at new year “Health, wealth and happiness for the forthcoming year” I am more than happy with just two of those, but won’t rule out (or indeed turn down) a lottery win 🙂

Enough of my ramblings, Happy New Year to everyone who visits this blog, and thank you all for your support over the last two years.

(Sorry Ian was singing to Rick Astley when this photo was took, and a double sorry for putting that song into your heads!)