Happy Days are here again …..

Well it’s been a little up and down this last week with Jude and his toilet issues.  But we seem to be alot better today.  Jude has been so happy being able to play on the floor and has taken particular interest in his new play gym from his aunty Jude (confusing I know).  I couldn’t believe my eyes this afternoon, Jude spent about half an hour on the lounge carpet kicking the gym and the toys and even trying to grab them.  He is such a different little boy when he is not in pain.  I just hope that when we see the consultant on 27th August we will be able to get something sorted about his toilet problems.

Also you may notice something different in the attached photographs (I know now I’ve learnt how to insert a photo I am becoming quite the photograph queen).  Anyhow on Friday last week we needed to change Jude’s tube as it kept on blocking, after taking it out we realised we couldn’t insert the new one straight away as he had just had a drink at which point Ian asked me how I felt about trying without the tube and giving Jude his drugs orally.  Well so far so good, I am not saying to myself that’s the tube gone for good, as I know there are lows as well as highs but we are managing at the moment and do have a spare tube if we need to re-pass it.  I think you will agree how beautiful my dear Jude is………..

jude the dude

Jude & J Jax enjoying the new play gym

It’s all just too much

This week has been a little stressful, Jude is teething and has recently changed his milk to a specialized formula milk called nutricia that is higher in energy and protein etc.  This also means that jude is more likely to become constipated, not a nice topic I know.  Well the poor little man has been throught the mill this week and spent many an hour crying, all to fill a nappy!  We are seeing the consultant in a couple of weeks so will raise this issue with her.  Rachel the dietician has also suggested the nutricia with added fibre to help, and if this is not successful a drug called movolon (I think).  This picture demonstrates that it all became too much for him yesterday and sleep was needed.

and so to sleep

With regards to his first night in his room…. I woke the next morning and said to Ian “Well he was alright last night wasn’t he” ….. famous last words.  Ian woke at about 2.30am ish with him and looked after him till nearly 5.00am when Jude finally gave in and slept, and as for me? I didn’t hear a thing and slept through it all, and that’s a first for me/

Some of Jude’s friends have asked if they can have their picture wih Jude on his blog, so shown below is Jude with two of his ‘girlfriends’ - Colleen and Oliva.  (Sorry to Luke as his picture did not come out well)

Teeth

Well this week has been a fun one, my first back at work, which went well that is once I got there.  There is quite alot to sort out each morning for three children, youself and a cup of coffee for your husband!  I never knew I could be this tired, falling asleep in the bath one morning and waking up at 7.20am, totally panicked.  Jude hasn’t been behaving in the sleep department this week, most nights waking up in excess of two times, probably having something to do with one razor sharp tooth and another one eager waiting to make an appearance.

Tonight he has gone in his own room.  To all who know us that will be a total shock, and no the room isn’t yet finished.  The border still has to be put up and we have some stickers for the wall that still have to be applied, but Jude is in his room, sleeping in a white cot origianlly bought for Nathan ten years ago, that has been used by Joe his bother and his two cousin’s Reuben and Aoife.  We sure get our money’s worth out of things in the Marrey household.

No more pictures at the moment, just the hope of a good un-interupted nights sleep……….  Please

 

It’s a hard life ……….

Well it has all proved just too much for Jude, today he finally cut his first tooth and after a verysleepless night, Jude finally gave in to cousin mim and went to sleep in her arms.

me and my cousin mim

We had a visit from the dietician today, who has suggested we try a specialised formula milk, which will have to be introduced slowly, so that is going to be another thing to juggle in our already hectic life.  All I can say is watch this space. Never mind, it’s back to work tomorrow for me

 

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

Swimming with Daddy, Nay Nay and Joe Joe

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

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.