Happy Days

It feels like an age since I have have added anything to Jude’s post.  Things have been so hectic in the Marrey household with school term ending and sorting out things for our holiday.  Yes I can’t believe we actually made it away. Our first holiday since Jude was born.  There were times when I never thought it possible to actually get away, but we did it. 

With Jude’s absolute love of the car (not!) we decided the best way to travel was by train.  This worked out brilliantly, however you need a car to get to and from the station, and let’s jst say Jude let us know he was none too happy about that.

Our holiday was beautiful and we had (as we’d joked to people) “booked the weather” – glorious sunshine every day.  We went with my parents who stay in the apartment beneath us, I think we should really buy them ear plugs to take with them!  We have been going to Scotland with mum and dad since Nathan was 15 months old and we really love it there.  It is so lovely to spend time with mom and dad and for them to spend time with the lads, this holiday was so very extra special to be able to take Jude with us too.

He of course likes to keep us on our toes and decided that he would like to try out a different doctors surgery! Yes he picked up another chest infection, that coupled with him teething made him a bit grouchy for a couple of days.  We really thought that he would cut his first tooth in Scotland, but they are still just underneath the gum.

Jude loved going for walks and really enjoyed the swimming pool, which the pictures will show. We must have had a good time as Ian and I are already talking about “next time” and maybe one of us making the whole journey via train with Jude – from Edinburgh to Pitlochry as that part takes 1hr 45 mins in the car and it’s not pleasant with screaming all the way.  We couldn’t have done this holiday without my mum and dad who made the time so very very special, so big kisses hugs and thanks to them both x x x o o o x x x

Jude enjoing a walk with this dad, this should be called spot the dad and Jude competition

Jude enjoing a walk with this dad, this should be called spot the dad and Jude competition

Swimming with Daddy, Nay Nay and Joe Joe

Swimming with Daddy, Nay Nay and Joe Joe

We call this pooh stick bridge and many aa game of pooh sticks has been played here, may be next year Jude can throw his own stick

We call this pooh stick bridge and many a game of pooh sticks has been played here, may be next year Jude can throw his own stick

The Family Marrey - happiness

The Family Marrey - happiness

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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