Changing the World

There’s a very special lady who I don’t know, who I’ve never met and who I may never meet. She has a wicked sense of humour and a beautiful way with words.

Her name is …danielle, she hasn’t yet told me what the … stands for.

…danielle has three kids - Bristel, Toby and Trevor and Trevor, like Jude, was diagnosed with IS. Visitors to Jude’s blog might have gone to see Trevor at his blog. If you haven’t, take a peek.

In the US, a drug used in the treatment of IS costs. ACTH costs an awful lot of money. $40,000 per vial. 5 vials per treatment and insurance companies are reluctant to pay. The other first line treatment for IS is Vigabatrin and that is not FDA approved in the US.

To put that cost in perspective, Jude was twice prescribed ACTH here in the UK. The first time was aborted after a couple of doses ($80,000) and the second time we got through 7 vials ($280,000). Cost to us, Jude’s parents £0. I don’t know the exchange rate between sterling and the US dollar but my guess is that our £0 wouldn’t go very far in the US.

…danielle got quite irate about this state of affairs. I think quite rightly …danielle got irate. She told us through Trev’s blog and people read and understood.

Even the government were reading. And the government got in touch.

If you read this, drop by …danielle and wish her luck, leave …danielle a comment. In spite of everything going on for her, …danielle and her blog might just change the world for someone else. How impressive is that?

Thanks.

My Jude

I took the opportunity of taking a picture of jude in between tube changes. The fact that I totally blocked his tube with Imeprazol is neither here nor there.  Anyhow the community nurse - Sian came and helped me out as the clever one out of the two of us was in London for the day.  Jude was none too happy at being messed with, but we got the job done.

As you can see I can now download photos (not so blonde after all!)

Jude has continued to impress the OT and the physio doing amazing work again last week, although the last few days he’s been a bit off colour, due to teeth wanting to make an imminent appearance coupled with toilet issues! If you know what I mean.  Jude is going on his first holiday soon, and we hope his Scottish experience will be a good one.  Both Nathan and Joseph are looking forward to it.

Jude also tonight sends a special big hug and lots of love to his Uncle Noel x x x x x x x x

Jude’s Christening Pictures

It looks like the blog has been hijacked by Jude’s mom - luckily she still needs me for the finer things in life (like uploading pictures to the web).

It’s Rachel’s birthday today and Rachel likes birthdays. Happy Birthday Fahy!

Nathan, Mom, Jude, Dad and Joe

Nathan, Mom, Joe, Naomi (our niece) Jude and Dad

Dad, Joe, Jude, Nathan and Mom

There is a light (and it never goes out)

Today is 30th June and it has been a good day (that is apart from total sleep deprevation).  We had a visit arranged today from the phsio - Jane. The previous visits have been done with the occupational therapist, but today Jane came on her own. Usually Jude will comply with what Jane and Alison do with him but never shine, well that is until today.  He showed his true Marrey charm today, flirting outrageoulsy with Jane doing everything she wanted him to do and a whole lot more. 

Grannie Elaine has been coming to the hydra therapy sessions with me and had noticed how much Jude enjoyed working with the role ( a sort of long clindrical foam tube).  She decided to make him one and let me have this last week. So today I very proudly showed Jane this and she thought she’d give it a go.  The results were absolutely amazing.  Jude showed us all exactly how much he could do, showing good head control and weight bearing through both his legs and his arms.  Jane kept on commenting that she had never expected to see so much from Jude today, and that she was so glad she came. He also cooed, oo-ed and ahh-ed constantly, and repeatedly flashed that gorgeous smile of his, oozing charm all the way! (Still not figured out posting photos though)! But promise to get one soon.

Today not only showed us what our little man could do but demonstrated (yet again) the amazing support we have from our family and friends.  I don’t think that Ian or I will ever be able to say ‘thank you’ quite enough.

Happy Days

What a difference a day makes

I know there’s a song in there somewhere… However the day I am referring to is Saturday 14th June.  Jude’s christening day.  It was a day that in some dark moments I thought we would never truly make, but we did and in true Marrey form we did it in style.  The priest made a pointed remark at the start of the ceremony that Ian and I had said we had a few friends joining us, he paused and looked around the church (at the sixty of so guests) and then remarked he didn’t think there were enough hymn books to go round.  It was a lovely day and made me realise how lucky we are to have the freinds and family we have around us.  Everyone came to celebrate with us and Jude this special moment, and of course I made sure they bought some food with them for the party afterwards!  When I looked around the room in the Parish centre I realised what lucky people we are to have such amazing support.  It is a day I will treasure and will never forget.  Jude is a very lucky little man and has five, yes five special godparents (Unlce Noel, Jude {my sister}, Tracy, Rachel and Naomi, who I know will look out for him always).  If I was clever enough I would now attach a picture of the christening, alas I am not so it will have to be done at a later date by Ian.

The latest things that are happening with Jude are he is attending a hydra therapy session each week which he seems to enjoy, some weeks more than others.  He seems to be using his legs more and is starting to make some movements with those hands of his.  I think he has realised he has a voice and enjoys being quite vocal cooing quite alot.  I’m also trying to get a slot in the sensory room so that I can take him ad do a little bit more work with him, and am going to start a baby yoga class with him (hopefully). It’s a good time at the moment, long may it continue.

Couple of pictures

Another variation on Jude’s favourite pose.

My boy…..

A chink of light

I’ve re-read my last entry and it seems a little negative in light of how we’ve been the last few days. Jude has been shining bright.

All those weeks of distress, pain and agony (and Jude wasn’t enjoying himself at all either) have suddenly melted away. His change of medication does seem to have made a remarkable difference. The arching which the consultant was sure was due to reflux - all but gone. The struggle that was feeding - it’s now a pleasure for him and us. Where he was tense, he is now relaxed. Where he cried, he now smiles.

On Friday, I inserted my first NG tube - I was told it was the thought of it that was harder than the actual act and that’s certainly true. I’ve done it now so hopefully can do it again (first time too I say without modesty).

On Saturday Jude was baptised and it was great to see all the people who have made the last few months possible. Our families, our friends - those who are special to Jude in a way that goes further than I can write on here.

Those who know me will acknowledge that I am not an overly religious man but I do take great comfort in the many prayers that I know are being said for us and Jude. The Sisters of Mercy in Ireland provided some holy water from Lourdes for Jude which was used for his baptism and they have him in his prayers for the next week. They have never met him. Friends through this blog have offered prayers for Jude as have family and friends elsewhere - and for all of them I am eternally grateful.

There have now been over 5000 hits on Jude’s blog and every single visit is another sign for us that Jude is in people’s thoughts and there can never be any doubt that we are not alone.

In the words of that great Jedi Master, Yoda - “Humbled am I.”

Worst fears verbalised

It isn’t difficult to imagine the worst - on and off my imagination veers in that direction, not helped by the mass of information available literally at your fingertips. Google, so much to answer for.

Some things have gradually deteriorated, nothing drastic just a gentle slide to being not quite as good as it was interspersed with highlights of being as good as ever sometimes better.

After a pretty miserable last week Jude was taken back in to see the consultant and as usual, Jude improved markedly as soon as he gets through the hospital doors. My cat doesn’t behave like that when she goes to the vets!

I think the consultant was expecting to see a sickly baby, in distress and in need of intervention - that’s what most people thought at the end of last week. Instead, he was smiling and cooing and having a good look around.

He’s lost weight, so despite an apparent improvement in his feeding, clearly it isn’t enough . He’s been referred for a G-Tube (straight into the stomach) - it won’t happen any time soon, there’s a few months before he’ll get an assessment and then he will need to be booked in for surgery. Maybe it won’t be needed but it we get there it clearly will be.

He was also getting very, very distressed passing wind and stools and was clearly in pain from reflux type symptoms. The consultant now firmly believes that despite the fact that the xray didn’t show reflux he most definitely has it. So we now have a new set of drugs to get our heads, hands, syringes and tubes around.

The Diazepam stays and added is Baclofen, Domperidone and Omeprazole - muscle relaxant, anti-emetic and anti-reflux drugs respectively.

On Monday, Rachel asked the consultant whether Jude would walk and whether he would go to mainstream school - on both accounts the prognosis was poor although she admitted that she had been surprised on many occasions.

It’s not like I haven’t thought about these outcomes, I know that there will be significant challenges but it’s a little sharp when it’s said out loud.

Of course, we haven’t accepted this as how it will be and we believe that Jude will rise and establish himself. In his way, in his time.

The ups and the downs

A chest infection strikes - this hopefully explains the little man’s unhappiness in the last couple of days. He must wonder what he’s got himself into some days.

A Jude Update

It’s a mixed bag really - Jude is so much better than he has been and in many ways is hard work in the way any 6 month old baby is hard work - perhaps more so. Because of the way he has been he has had a lot of physical contact to calm him down, and now he won’t calm down without physical contact. We want to treat him, as much as possible, in the same way we approached the other two boys - make mistakes as we go along and learn from them but it isn’t as easy.

Jude still isn’t too interested in his hands (apart from glasses, necklaces and his NG tube) which is frustrating, I think if he could get some enjoyment out of playing with toys he would be in a much happier place…but, he is interacting much more with people and people like that.

We’re fairly sure he is still in pain at times, possibly reflux or something similar even though the diagnostic tests showed nothing. He has stopped being sick and in the past couple of days has really improved taking his bottle, he’s also progressed to more textured food - chocolate muffins and mango. After speaking with the dietician today we’re looking to remove the NG tube next week for a trial run, just need the Speech and Language Therapist to have a look at his eating and drinking skills at the moment.

Our eldest, Nathan, was 10 today. It doesn’t feel like 10 years ago. We don’t do birthdays in our house, we do events. It all kicked off with go karting on Friday followed by Pizza Hut, a little lull on Saturday then some friends around Sunday afternoon and then more friends and family today. Jude has gone to stay with Granny Elaine for the night, he greeted her with smiles and hopefully that won’t prove to be a false dawn.

Later on this month Joe will be 8 and we’ll do the whole thing all over again. I can’t wait.