Some Photos

These are from Rachel’s mobile phone but they could only really be improved if I was in them!

This could be the first reported sight of Jude trying to crawl without dribbling everywhere!Jude crawling

 

 

 

 

When it used to be a major event to get a ‘Jude smile’ now he gives them away for free, usually when you least expect it. Tart.

Jude smiles

Cousin Mim hypnotises Jude with a blurry, shaky thing.

Jude and Mim

What Now?

It’s been a week since Jude went onto the high dose of Vigabatrin and he seems to have settled down into a solid routine. His smiles are not as easy to come by but they’re still there and most of the time he is either eating or sleeping. He gets up once in the night, feeds and goes back to sleep pretty easily (at least I think he does, I’m usually asleep).

There aren’t many, if any, obvious seizures – if they exist they aren’t intense or often. I know that we need to rid them completely both externally and on the EEG and I worry that the Vigabatrin won’t work fully and we’ll be asked to reconsider the ACTH again.

Everything seems to have slowed down after the hectic three weeks post diagnosis. We’ve been out of hospital for a week now and Jude’s blood pressure looks like it is back to normal. I’m even resisting the temptation to nick some of the kids’ Easter Eggs, they’ve got so many I’m sure they wouldn’t miss a couple…. and I’d be saving them from themselves too! They’d thank me in the long run.

Another EEG

We went up to the Children’s Hospital today for a repeat EEG. Jude’s only been on full dose Vigabatrin for a few days and we weren’t really expecting much. The consultant was on leave so we weren’t told anything officially but the very nice young lady who did the EEG did let us know that it was better than the last one – she said it was good news.

The last week has been so much better, after having to contend with a catalogue of bad news it has been really uplifting to have a few things go right.

Back Home

After 6 days we’re back home.

We got a little bit more information about the cysts on Jude’s brain – they occurred during pregnancy and at the moment nobody knows what impact they will have on him. They are in effect just skin where brain cells should be – whatever they should have done will prove to be a problem for Jude although other areas of the brain can compensate they will not be as effective.

Jude’s mood is still good and he’s still making us happy – we’re very much in the mode of we’ll take everything on if and when we have to. Thinking too hard about the possible outcomes inevitably leads to negativity which is in total contrast to Jude’s current well-being.

According to the developmental milestones he should be meeting at around 4 months old Jude is not doing too badly at all – even if we are slightly subjective. Most of the ‘mastered skills’ he has either been showing for a while or are really starting to come out now that he is settled. Not bad for a bloke!

The Eyes Have It (maybe)

They came to look at Jude’s eyes this evening – it seems that they are great at the front but the nerves are ‘a little light’ at the back. This means there could be a problem with visual processing but they won’t know for sure until they have done some further examinations in a few months.

Dear Easter Bunny

How about some good news once in a while?

Yours sincerely

Jude Marrey

The MRI Results

I had already worked out in my own head that when we were told the outcome of the MRI it wouldn’t be good news. He has a small head, he has infantile spasms, he has some developmental delays -the signs were there.

When the consultant began outlining the facts I wasn’t devastated, a little disappointed maybe, but not devastated. I was holding Jude and he was looking up at me, smiling and cooing and generally taking in the room. What was being said and who I was looking at were two completely different things. I already knew that Jude would need extra help and support as he grew up so the diagnosis didn’t change that. I already knew that there would be challenges ahead, the results of an MRI didn’t impact on those challenges in any way. It felt uncomfortable taking the news ‘in my stride’ while my wife looked on devastated – I have a feeling there will be many other times in the future when those roles are reversed, Rachel is strong while I’m curled up in a heap on the floor. For now, today, Jude is happy and he is improving day by day in terms of development – everybody sees it so it’s not just optimistic parents.

We have another EEG on Friday and Jude will only have been on full dose of Viganatrin 3 full days so we’re not expecting anything great from that but we are definitley more preapred to challenge and discuss any changes to his medication. There will be no repeating ACTH at this time – maybe later if needed, we’ll see.

As for the diagnosis……cysts on the brain, almost certainly occured pre-birth and absolutely nothing we can do about them. We were asked is we had any questions and we have loads, we just don’t know what they are yet. The consultant says moderate to severe developmental delays but admits that she doesn’t really know. We have a job to do and it is no different to the job we had with our other two boys – give Jude the best we can and love him to bits and as challenges go it’s a pretty easy one!

Better Days

Jude’s blood pressure has come back down and after some strong words to the doctor (and a friend having a go at the nursing staff) we are starting to get a little bit more attention now from staff. It’s really hard not to take your frustrations out on the people caring for your baby but when all you want is absolute perfection anything less is really difficult to take. I understand that Jude is not the only child in their care and maybe it’s selfishness on my part but….

Thankfully we have a great group of family and friends who quite happily put their own needs on hold for Jude. I don’t think we could get through this without them and I wonder how someone without such a strong network of support could possibly cope.

A good friend, Pete, got in touch with the football club we support and watch as season ticket holders – Wolverhampton Wanderers – he didn’t ask them for anything specific and just said that we’d been going through a difficult period. Rachel Heyoe-Flint, who is one of the club directors, phoned him and invited us and my two lads to the ground before kick off. We had some photos taken and Rachel got the boys a match programme and a pen and got some of the players to sign their programme at the end of their warm up. It didn’t cost them anything, it wasn’t a lot of effort on their part but the joy it brought my kids (and me) was priceless.

Nathan, Joe and Andy Keogh (Wolves)