Happier Times are on the Horizon

Just a quick post tonight.  Even though Jude still has the odd screaming session, he’s nothing like he was a few weeks ago.  We are having longer and longer periods of a more alert Jude, playing the staring competition with us, giving us what can only be described as “an old look”.  Today whilst asleep, Jude smiled twice.  Well it was either a nice dream or wind, but I didn’t care which.  It was truly wonderful to see and I like Ian cannot wait for the awake version.  When we get it, we will as promised provide photographic evidence.  Sleep well Jude…………. please x

What a Week (and a Half)!

Well we’ve has a week/fortnight from hell!  The toll that ACTH has taken on little Jude has been horrid.  Ian’s post with the ever so attractive picture pretty much summed things up.  Once Jude was asleep we were petrified to even move a muscle, because if we did………………. you’ve guessed it he SCREAMED!

He had his last injection on Wednesday and now has doses and doses of prednisolone to take.  I keep the picture in my mind of that first smile after the last bout of ACTH.  And believe you me, when we get it the whole world will know about it, and of course we will provide photographic evidence.

Today Jude has had a better day, spending time in his play ring looking at the toys and responding to sounds.  He has also been making good eye contact with us.  We have had a few horrible nights though, last night Jude didn’t settle until 3.30am then woke at 7.10am!  The picture attached shows a slightly tired little man, wonder why?!

Jude with his big little Brother - J Jax

Tonight we are sending our love to a very special friend and loved one – Anna Murray, take care xxxxxxxxxx

Full on, in yer face – Jude

What a fun day…not.

Jude has two activities at the moment, sleeping or screaming. Sometimes he even screams in his sleep. I really had forgotten just how badly this drug hits him.

I took him up to the hospital today for his ACTH injection, he screamed all the way there, he screamed all the time he was there, he screamed all the way home. Then he slept, but only if he was clamped onto me in some way. I spent the whole afternoon lying on the floor with him sleeping on my tummy. Guess what he did if I tried to move him…..

He is currently lying on Rachel’s tummy in the other room and they are both sleeping and I’m not disturbing them.

Jude Marrey - ever so slightly irritable

Back home (again)

Jude’s back home again and he’s sleeping. He’s doing a lot of sleeping at the moment which is a good thing because awake he’s an angry little baby. It’s just gone midnight and he looks peaceful and relaxed, if only it was always like this.

He’s about half way through his ACTH and maybe, just maybe it’s worked again. We think, just think, that we haven’t seen a spasm for a couple of days now. Please let it be so. Please. Every one I saw in the past couple of weeks has shook me to the core. Having believed that we had seen the last of them, every repeat was heart breaking. While they exist it feels like they have taken my son and holding him hostage just out of reach.

I’ll know they’ve gone when he smiles again. That’s when I’ll know that Jude is back home (again).

Another Day In Hospital

When I went to the hospital this morning, I wondered what I would find… the little man I had seen the day before was so upset and in obvious pain.  My sister – Jude (the elder) had come to relieve me yesterday so I could go home and get some rest.  Jude was so unhappy and the nurses felt he needed a break and they decided to give him some chloral, just so he could have a chance to rest.  I think it was what the little man needed as today, he seemed alot more settled, still suffering with the dreaded wind but so much more settled than the day before.  I found it so hard yesterday seeing him suffer but I think you will agree the picture below shows a more settled Jude.  His blood pressure is on the up and a little high today.  I think the hospital are going to keep a close eye on this, so we are not sure when Jude will be home.  Sometimes I can’t believe we are back on the merry-go-round again. Roll on home life together…… it’s funny how the simplest of things can seem so desirable – all waking up in the same house.

And so to sleep

Well He Was (back home), but not any more…..

Ok, I think Jude must love everyone in the Childrens’ Ward as we are back there again.  As of yesterday Jude was re-admitted.  My gp was quite anxious about his temperature and referred me to the ward.  I really just wanted to stay back home, having had a taster of life back at the hospital, I had decided 100% that I preferred home life.

We went back yesterday, and Jude was not a happy chappy the whole day, he was very irritable and cried most of the day.  This from just two ACTH injections, ad we have so many more to go.  His temperature has settled but our consultant wants to keep her eye on him while we do the next few injections.

She told me today that the results from the EEG carried out on Thursday were not good at all. I thought as much, following a four hour crying seesion last night, Jude was visibly jumping and twitching.  It’s is not nice to see. But I said to the consultant this morning, I know this road is not a nice path but it is one we must all travel for Jude to hopefully make these horrid things go away again.

My statement to Ian “If we stick together, we can get through anything”.  And we will.

Jude in Hospital

Jude is back home

Jude has restarted his ACTH injections but at a higher dose than last time – 2 weeks of ACTH followed by a few weeks of Prednisolone (also a higher dose).

He came home in a really good mood and at the moment I feel that while this next few weeks may not be pleasant it is something that he needs to be got through so we can start to get back to the Jude we got to know over the summer.

I went through some photographs on Rachel’s phone and realised that there were a whole load of photos from early summer of Jude smiling and then they dwindled to almost nothing. I reckon a smiling baby is happy and content and probably the reverse is also true. So if this can give Jude his smile back it will be worth it.

See you soon ‘real’ Jude.

Confirmed….

…Infantile Spasms are back.

Gutted for the poor fella, ACTH starts tomorrow and with any luck it will be as successful as last time.

EEG tomorrow and then back in hospital

It’s been a good long run since we were last faced with having to spend our time in hospital. There have been ups and downs but in the main it has been as normal as it could be.

Jude saw the consultant this morning and his mood and demeanour perked up the moment he saw her – it’s very hard trying to get accross how difficult things have been when your baby is cooing and smiling and generally being on top form.

Still, we were here because we worried – we showed her the video we took and she suggested Jude be admitted and a further EEG would be taken. Hopefully they’ll also look at the bowel problems, the difficulties feeding solids and the obvious pain he has.

If it’s back, it is ACTH again. Given that it did work wonders last time I don’t have the same reservations as last time – but it wasn’t pleasant.

’tis hard work for the young man.

One of Jude’s blog friends has lapsed, Trevor – he of the gorgeous eyes. I’ve mentioned Trev’s mom, Danielle,  on here before, she is the mom who took on the drug companies in the US with regards their charging policies for ACTH.

Danielle is not only facing the fact that her son is going through it all again but is also facing the same frustrations with the drug company.

You can read Danielle’s thoughts here…

I’m back and I may not be alone

I haven’t posted for a while because despite a number of ongoing problems I was starting to believe we were moving towards the next stage. I’ve been reading a bit – Cerebral Palsy, various types of epilepsy and a few other things I can’t spell let alone pronounce. Some or all of these things were part of the ‘next stage’ but unfortunately we think that Jude’s Infantile Spasms are back so next stage will have to wait.

His mood has levelled off over the last few weeks, this raises some alarm bells but I was feeding him Friday night and there was a clear ‘jerk’ – head slightly backwards and both arms all at the same time and all this repeated half a dozen or so times. Jude has always had some original moves but this ticked the boxes that there was something wrong.

I feel angry, not at anyone but at ‘it’. If ‘it’ is back we’re probably back on ACTH. If ‘it’ is back we might have to have the feeding tube back in again. If ‘it’ is back he’s got to go through the whole pain that is ACTH.

We’re going to see the consultant Wednesday morning. Maybe it’ll be nothing – that would be a first!