I have avoided writing this post….

We had a great week in Ireland. Rachel and Jude flew over safe and sound, me and the boys survived the rough Irish Sea. It was great seeing the family again, the boys had a day out in Dublin, the weather was fine and mostly dry and the coffee and tea flowed freely. Never did make it out for any Guinness although we had plans. Oh yes, we had plans.

On Thursday on the train back from Dublin with Jude and the boys he was being fed through his tube and I decided to leave him partially attached with the aim of disconnecting his tube when we got back home. I forgot, tried to lift him out of his pushchair unaware that the tube was caught and as I lifted him from the seat the whole lot was yanked out leaving a hole where the tube should have been.

We have about 20 minutes before the hole closes.

Jude is mildly shocked but not in any apparent discomfort. Daddy is a wreck. Thankfully, Rachel took control partially reinserting it back in and holding it there as I drove back.

We had no like for like replacement so Rachel tries to insert a different type but it won’t work so she improvises with what was the attachment tube (the one that got tangled in the pram), cuts off the end and inserts it all the way in and tapes it off. And we’re off to the local hospital (blue light ambulance and all) where the replacement tube is inserted and all is better in the world again. But our plan for Guinness was out of the window.

This is the type of button Jude did have in, it sits nice and neat on top of his tummy and his feed and medication is inserted through a tube that is inserted into the top. It is the tube that got caught in the pram.

This is what Rachel was trying to insert and what Jude has in at the moment while we wait for a spare button.

And this is similar to the tube my very calm wife used to keep Jude’s hole open until we got to the hospital. If she decides against a career in medicine she can try her hand out at plumbing!

Back home now and the results of Jude’s MRI has been posted to us – no explanation about what it means, just a series of medical terms. Not much fun to read when you don’t really understand it. Thankfully an emergency appointment was arranged to see the consultant. It seems there has been no change from Jude’s last MRI so no deterioration but the ‘damage’ to Jude’s brain is extensive, on both sides and his brain isn’t growing. The prognosis is Jude will be whatever Jude will be. There was also a comment made about his reflux and the risk of reflux triggering a nerve (I think the Vagus nerve after google-ing) which could stop his heart and so it is important to get the reflux under control.

Further google-ing, not my favourite past time at the moment, reveals that while reflux was considered to be a factor in sudden infant death syndrome further research suggest that maybe it is not the case….but reflux can apparently cause  heart palpitations. But having been put out there it isn’t easily taken away.

But Jude is happy at the moment, the boys really enjoyed their holiday and me and Rachel had some much needed down time.

Off to Ireland

During the summer we were meant to be going over to Ireland to stay with family but never made it. Next week, the boys are off school and we’re finally in a position where we can make the trip.

We have the letter from the doctor outlining all of Jude’s medicines, a requirement as no more than 100mls of liquid can be taken onto a plane. However, the idea of transporting all of Jude’s equipment (drugs, bottles, feeding tubes, syringes) was too much so me, Nathan and Joseph watched Wolves get a respectable draw against the Villa at lunch time and drove the 4 hours to Holyhead, North Wales to stay overnight before getting on the morning ferry. Rachel, who is wise, prefered not to take the boat – the Irish Sea has a reputation for making the uneasy queasy so she and Jude are flying into Dublin tomorrow afternoon.

As I drove through lashing rain and heavy gales this afternoon I wondered whether I had made the right choice in loading up the car and taking the ferry – maybe it would have been better to buy a really big suitcase, pay the excess luggage charges and hire a car the other side.

Thankfully, the weather has calmed down and I really hope that I wake up in the morning to blue skies and calm seas. Please…..

The hotel room is cheap and cheerful – one double bed and a pull out sofa. At the moment Nathan is sprawled across the double bed and Joseph ihas found himself a little corner of the room and has fallen asleep on the floor, and that’s where he will stay. Looks like it is the pull out sofa bed for me.

I was 4 or 5 years old the first time I remember coming over to Ireland to see my dad’s family. We would always go to a town north of Dublin called Balbriggan. The town where Dad grew up before moving to England when he was 16 or 17. I was the first grandchild, my dad had many brothers and sisters and as I grew up and came over every other year or so the number of cousins grew quickly. Some were around my age, many were much younger – my baby cousins.

Now my baby cousins are all grown up, some have families of their own – kids older than my own. There’s a new generation to replace the one that’s gone.

My dad was born in Ireland but spent over 2/3rds of his life not living in Ireland. I was born and bred, married and settled down, in England but I will always feel at home when I go back there, I know that so much of who I am can be traced back there.

My dad never met Jude, never held him – never found out the challenges Jude faces. Dad died just a couple of months after Jude was born. After everything that has gone on in the lsast 18 months or so, this is my first chance to take Jude ‘home’ and let him have a little bit of what he has missed out on.

Fundoplication

Well we were back at the hospital on Monday, again! this time to see the consultant about Jude’s stomach. He suggested, as we thought he would, that Jude needs a Fundoplication (twisting the neck of the stomach {I think}) he will try and do this keyhole but may have to convert to open surgery. More surgery, more hospital, more pain, more disruption, more cr*p

On a totally lighter note Jude decided to share the mother of all nappies with me, my clothes, my shoes and the canteen’s floor at Birmingham Children’s Hospital. In the words of Yoda ‘Funny, it is Not!’

MRI Day

Today nearly didn’t happen…… with me at the helm sorting out letters and information there was bound to be a hitch or two along the way. The first hitch was when Ian picked up the letter this morning and shouted me to stop the feed, at 8am….. This should have been stopped at 6.40am in order that the sedation could be given.  Also the drugs should have also been given at that time.  The second hitch was when I closely read the whole letter I realised I should have telephoned a week prior to the appointment to confirm our attendance.  I had no option but to get in the car and start to drive to Birmingham not knowing if the appointment was still on.

When I spoke with the ward it was confirmed that the scan could not go ahead as Jude could not be sedated.  I asked if I could come and wait for a cancellation, I was advised against this, well you know me I did anyway.  Enough of the mistakes anyhow, the scan: Jude was sedated at 12.30pm giving plenty of time for feed to go down etc.  The scan started at just before 2pm, I have been with Jude before for his mri so knew what to expect.  Jude lay there motionless (obviously something to do with the whacking drugs he’d ben given).  I sat there close by, mind wandering while the scan was taking place. How sad am I? I started counting the ‘bangs’ as I call them (this evening Ian assured me they weren’t called bangs, but  that’s the name I gave them).

One section had 960 bangs! I couldn’t believe it. Another around 300, after this I got bored of counting and just looked at my little boy inside a huge machine with all of this noise going on around him. The scan finished and we went back to the ward. After about an hour the nurses said I should try and wake him (ha ha) Jude had other ideas and was positively sure he was not going to move a single muscle.  The day case unit closes at 6pm and at 5.30 Jude was still no closer to waking up, his sats kept dropping and blood pressure in his boots.  I was informed that he’d be transferred to the day case unit on the first floor who were open until 8.30pm.  If Jude hadn’t stirred by 8.00pm we would have to be admitted! Jude just never does things by halves does he?

Eventually after much poking and prodding we roused him, managed to give him some fluids and 50ml of milk.  After this his bm raised from 3.9 to over 6 and his blood pressure rose to a more acceptable figure.  We arrived home tonight just before 9pm exhausted. And Jude? yep, he’s asleep.

This picture was taken just before we gave him his sedation. I know I’m his mom, but I think he looks gorgeous.  All we have to do now is wait, actually no it’s not all we have to do, we have to prepare ourselves for what the scan will tell us about Jude and I for one am not looking forward to that day.  Anyone want to swap with me that day???? Only joking.

Talking of pictures, if you haven’t visited Trevor’s blog lately and want to see an unbelievably brave little boy, take a look. He and his family have amazing courage and strength.

Brainwave and all that….

Last week we had Jude’s assessment at Brainwave and it’s been about a year since he first went there. At that time Jude was probably just turning his first corner after months and months of constant distress – there was a time when we couldn’t put him in a car seat without an endless scream. Travelling the couple of hours to Brainwave was one of out first relatively stressful car journeys we had taken with him.

Those couple of days at Brainwave really gave us cause for optimism – we probably still hadn’t come to terms with all the consequences of Jude’s diagnosis but whatever was to come it seemed that we had some control over the outcome.

Shame the following 12 months were such a struggle for Jude.

So we roll up a year later hopefully having turned another corner.

We’re going to concentrate on working Jude’s core strength for a while – neck, stomach, back – the muscles that will help move him towards crawling, sitting up and maybe (maybe) standing and walking. The exercise programme that he has works him hard but the physio says he is definitely using his muscles and he gets into a real sweat putting the effort in but it’s great to see him pushing himself up again.

He is also more symmetrical than he was and while still slightly dominant to the right it is not as marked as it was and his legs don’t cross over any more which I think is an indicator that his tone has improved.

We are learning more about Jude’s diagnosis and its consequences and quite probably there will be more twists and turns along the way. Next week he is having an MRI at the Children’s Hospital – that means more information is coming our way. I don’t like information, it always seems to be presented in the ‘worst case scenario’ type of way….I rarely even google any more.

A friend of mine….

Somewhere over the other side of the world, a friend of mine is probably sitting in a waiting room right now in a hospital somewhere as her little boy undergoes surgery to remove half of his brain to try and rid him of his seizures. And this is the better option.

The strength of some people is beyond words.

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’……

….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.

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.

Joe (with lollipop?), Nathan and Dad

Jude looking across Cardiff Bay

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.

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.