Promising Signs

Last time I posted I was bemoaning Jude’s lack of development, indeed his regression, over the past 12 months. Well, perhaps I should post more like that – in the last week Jude has shown some signs of regaining some of that head control and a few other things too.

We are trying to get him to spend more time on his tummy and there are definite signs that he’s working hard at lifting his head up and trying to roll himself over. Still some way to go but he’s trying.

He is also starting to show some interest in putting food in his mouth. We put food in his hand and it gets to his mouth or thereabouts – hopefully he will start to make the link between his hand, the food and his mouth.

Unfortunately, he also has a pretty bad cold which isn’t helping him but when he’s good he’s very good at the moment.

In other areas of family life, I broke the little finger of my eldest son playing football and then convinced him it would be fine, just a bruise. How come when he tells me not to feel guilty it just makes it worse 🙂

Quiet week

Not much with Jude this week. The Vigabatrin appears to have made no difference to his seizures but he’s been in a great mood. He’s been provided with a ‘stander’……

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….which he is not so sure about yet 🙂

His head and trunk control is still very poor. There’s a picture of Jude from last year on the header at the top of the blog which shows where he was in terms of head control but he’s had a rough year being in and out of hospital for various things since January his development opportunities have been curtailed.

He’s a big lad too….13kg. It’s getting to the point where he can’t be carried like a baby anymore, the various aches and pains we are carrying are a testament to that. An assessment is going to be done soon to look at grants to help make changes to the house – there is talk about a ‘Jude flat’ downstairs. With all his stuff we need some extra space.

We visited a nursery last week and Jude will be going for a couple of sessions a week and will have his own dedicated carer for the time he’s there. Jude’s friend Alfie already goes there and they have a nice little sensory room.

We will be going over to Ireland in a few weeks to stay with family. Me, Nathan and Joe will be driving and taking the boat (and the Jude stuff) across the Irish Sea, Rachel and Jude will fly over. The sea might be rough says Rachel. Ha.

A few weeks back we had a holiday in Wales staying at my brother and sister in laws place.

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The boys, including me, are big Doctor Who fans and this picture is the (supposedly) fictional entrance to Torchwood in Cardiff. More pictures here. You can see me, Rachel and Jude in the picture too.

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Joe (with lollipop?), Nathan and Dad

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Jude looking across Cardiff Bay

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Rachel and the boys have a ‘thing’ for VW Campervans – a little game they have where they shout out ‘Campervan’ everytime they see one. Imagine their joy on a day out in Porthcawl when there was a 15 minute procession of them through the hight street.

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These were taken at the National Showcaves Centre – Dan-yr-Ogof

Buttons are Lovely Things

We need some good stuff to happen I think. Yesterday I took Jude to Birmingham Children’s Hospital to have his tube changed.  Jude was well behaved, he was not pleased at having a tube pulled from his tummy and cried and went bright red, better red that blue though.  All went well and Jude is the proud owner of  a very neat button 🙂

Also today he has been measured for shoes, which should arrive in about three weeks – lovely blue boots – great for the winter.  Think we need to focus on the good things that are happening for Jude.

Bad EEG……..

We took Jude to the Children’s Hospital on Saturday to get some feedback on his most recent EEG and the results are not good, depressing in fact.

Jude has  always had a lot of ‘activity’ going on…and not good activity. Most of his treatment so far has been to try and resolve this – first there was Vigabatrin and then a number of ACTH/Prednisolone treatments. Vigabatrin seemed to have no effect and the ACTH/Prednisolone only worked during the administration of the drug and it is not the sort of drug therapy that can be used long term.

Our consultant has effectively said that there is no benefit in continually putting Jude through such stressful treatment with little hope of long term gain. The best we can hope for is control of the seizures which have improved under the current medication regime.

We’re going to give Vigabatrin another go – not with the intention of resolving the background activity but because when he did try it in his early months it did seem to give him a lift and reducing the visible symptoms. In time, we might also look at the Ketogenic Diet.

On Tuesday we hope that Jude will have his button in place for his feeding tube – we’ve all had enough of this tube and the constant problems we’re having with it. Hopefully it won’t cause him too much distress!

In nearly 2 years of life Jude has had obstacle after obstacle placed in front of him. He batters his way through them leaving debris in his wake rather than clears them – disappointing as it is, Jude has been through so much for so little and at times we were worried we risked losing him…perhaps a different approach might bring different rewards.

That Damn Tube

Today has been an exasperating one for me.  I have literally lost count how many times the adapter has fallen out.  I know he’s had about five changes of clothes.  It’s only 10.30pm so there is still time for more believe me.

Tomorrow is our appointment at Birmingham to have the results from Jude’s EEG. All I can say on this point is watch this space.

Attached is a photograph taken this afternoon, following Jude’s hair cut.

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Sorry there’s two pictures I couldn’t decide which one to post.