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.

Mr_mri_boy

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.