Surgery has begun!

Dylan and Mr Tumble all gowned! I have read so much about this surgery, researched, followed the progress of hundreds of kids, went against all professionals in Ireland and pushed to get Dylan this surgery.... All of this and I still can't believe I am here, nothing can ever prepare you for when they wheel your child away. All my trust is in Dr Park and his team now as surgery has just started, please keep my baby in your prayers x

Day 4 St Louis - Pre Op Day!

Today started out nice and cold again at -10 degrees as we set off on our journey to meet Dr Park. The shuttle service run by The Residence Inn is great, dropped right to the entrance of St.Louis Childrens Hospital and picked up there again when we were finished, fantastic service! 

We arrived not really knowing what to expect and we were greeted by a very pleasant man on hand to give us directions.(I think he was a police officer!) The hospital was clean and bright just as a hospital should be! Our first appointment was 9.30am, we had to watch a video about SDR and then Dylan had a physio assessment with Jacky. Jacky was happy with Dylan's assessment, she ran through different things regarding the hospital facilities, what to expect after SDR and the physiotherapy to follow. We then met the man himself "Sir Dr. Park"! Dr. Park's letter from June said "We feel Dylan has the chance to walk with a walker" and PERCS wasn't recommended at that time. Today Dr. Park recommended PERCS for Dylan while we are here and said he reckons Dylan will walk INDEPENDENTLY!! Best news ever! Dylan starts a long road of hard work tomorrow, he is scheduled for surgery for 7.30am (1.30pm at home) so all good vibes, thoughts, prayers and candles welcome.

Day 3 St. Louis! The Deep Freeze!!

Today, unfortunately Dylan is still pretty wiped! (Getting in on this American slang already😃) Really hoping Dylan comes round for tomorrow's physio assessment and definitely hope he comes round before Tuesday, he really needs to be well rested by then! The plan today was to go to the zoo, the kids woke up early and the weather was fine, so we went downstairs for some breakfast and within an hour of finishing breakfast it was in the minus degrees and snowing! Safe to say we didn't venture to the zoo today, but we will at some stage while we're here I'm sure, there's so much to see and do! Rumour has it that the weather is due to get colder this week, thank god we brought our winter woollies! :) We did end up taking a trip to Walmart... It was an experience, the place is HUGE! :)

The plan for tomorrow is hospital at 9.30 (15.30 back home) to meet Dr. Park, Dylan loves the book "Sir Dr. Park and the dragon spasticity" so he seems to be looking forward to it, so let's hope all goes well and the weather gets warmer!:)

Day 2 St Louis!

Nothing major to report, today was a relaxing day, we still have 2 very tired babies and it was quite a rainy day so we didn't do too much. I've heard a lot about the Galleria and The Cheesecake Factory so we went for a look, there was a queue for a table at The Cheesecake Factory, which of course is a good sign but not something these 2 jet-lagged babies will tolerate right now, so maybe another day! The zoo is close by so we might venture down there tomorrow! Dylan meets Dr Park and has his physio assessment on Monday, he is then scheduled for such a huge operation on Tuesday I just want him, relaxed, strong and well rested, so nothing too hectic planned for the moment!

Day 1 St Louis! We're Finally Here!!

A car, a bus , a train, two planes, 3905 miles and 20 hours later we have 2 very tired little boys (thank god for iPads and dummy's!) We set out on the road at 7am and got to our hotel at 8pm local time (2am next day our time) so it was a really long day for Dylan and Deryn but hopefully it will bring them round quickly to St Louis time as we're not arriving mid day and they get to sleep all night! (Here's hoping!) 

Hopefully we'll have many many exciting updates during the month we're here, time for sleep now 😴😃

If at first you don't succeed.....

There has been so much going on recently that I have neglected this blog a bit... Ok, ok a lot! 

We have been so busy in fact, that we are now one sixth of the way to our target of €60,000.... Can you believe we have raised €10,000 already? 

So here's a run down on how things went..... And what's to come :)

On the 17th of May, Gillian Sauvage and Re:Publik Music kindly offered their "Fish Go Deep" event as a fundraiser for Dylan! 600 people attended (full capacity of nightclub!) raising a jaw dropping €4000 for Dylan! An absolute phenomenal amount, thank you to everyone who came and of course to Gillian and Re:Publik Music!

22nd of May brought us to Norris's bar for a quiz night. 11 tables full of knowledge had a great night at a quiz made very enjoyable by our fantastic quizmaster Dermot Molloy!! The raffle was sponsored by some very generous local businesses who deserve a special thank you, Personal Touch, JC Originals, Dunphy's butchers, Aurelia Foods and Norris's bar for raffle prizes and also the venue.

On a sweltering June bank holiday Monday, Cormac McCarthy and John Burke took to the streets of Cork to run their first (and last!) marathon to raise funds for Dylan. A huge thank you to the lads for raising a total of €735! 

From 6th - 8th of June the first annual Waterford City Tattoo Convention was unveiled and what a spectacular weekend it was! Tattoo artists came from UK, USA, Spain and even from places as exotic as Edenderry! The co-ordinators of the convention kindly hosted a sponsored shave to raise funds for Dylan! Four kind hearted men took to the stage to de-fur themselves of their flowing locks. Even dreads that had been on the grow for SEVEN years were shed for Dylan! 

We would also like to take the time here to acknowledge a fifth man who took to the stage for his "Final Shave"! Paddy Flavin will return to the 2015 convention after participating in a sponsored grow for a year to raise funds for Pieta House! Well done to Paddy!

It didn't take Dylan too long to get used to his Daddy after the shave....

Dylan even got a keep sake from Ger Brady of Studio 13, Edenderry. Ger was an absolute gentleman. Someone informed Ger that Dylan was admiring one of his ornaments and Ger selflessly went out of his way to look for Dylan to give him the piece to take home, thank you Ger, you made Dylan's day!

Another gentleman who needs a mention and a thank you is Peter from Pinz and Needles in Cork. Mammy wanted a tattoo that incorporated the cerebral palsy awareness ribbon and Peter kindly offered to do it free of charge.

If you are ever in Cork or Offaly and you're looking for a tattoo, these men deserve your business!! 

All in all it was a fantastic weekend with a bonus of over €2200 raised for Dylan!

A massive thank you to everyone involved in making the convention such a fun weekend with so many lovely people!

We are looking forward to the second annual Waterford City Tattoo Convention! 

If all that is not enough, get ready for what's coming up.......

Another head of SEVEN year old dreads are being shed (I'm a poet and I didn't even know it!) for Dylan :) Dylan's cousin Gary Cunningham will be letting go of his signature ginger dreads to raise funds for Dylan, a date will be confirmed soon so keep an eye on the website. If you would like to sponsor Gary you can do so at www.operationdylan.jimdo.com/gary-sheds-his-dreads

On Saturday 28th June Trevor Reilly and Emily Murphy will take to the streets of Waterford to run the Viking Marathon for Dylan! 

Trevor and Emily can both be sponsored at www.operationdylan.jimdo.com/waterford-viking-marathon 

On Saturday 5th of July get yourselves to Kilcohan race track for a fun night all in aid of Operation Dylan and Pieta House!

Tickets are only €10 for adults and €20 for a family ticket (2 adults and 2 kids)

We will post info on how to get tickets soon so keep an eye out!

Also in the planning is a picnic in the New Streets Gardens (which are amazing), Cork women's mini marathon, Hell and Back marathon, a gig or two, a mind blowing bake sale, I'm sure there's something I'm forgetting!

Please forgive me for neglecting the blog but as you can see we have been crazy busy, but we're not stopping until we get to St. Louis...

Dylan's prognosis since he was about 11 months old is that he will be a permanent wheelchair user... I didnt like that prognosis very much so I decided I needed to find something that will change it and so I found Selective Dorsal Rhizotomy Surgery, Dylan wasn't strong enough for this surgery last year and was turned down for it.

However, if at first you don't succeed... Try..... Until you do!! :)

 

Dodgeball Tournament 3rd May

The Dodgeball Tournament on the 3rd May was organised by the Waterford Dodgeball Club and was a great success.  Thank you to the Waterford Dodgeball Club for organising the event, to the Kilmacow Community Centre for the use of the hall and to everyone that came and made it such a success.  With the help of everyone we raised a massive €500.

Well done to the winning team Oozma Kappa and to the Hammer Hands coming 2nd and also not forgetting David Delaney who won Last Man Standing!