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Day 5 (post op day 1)

Last night was a long one with Harry being unsettled so not much sleep especially for Mum and that carried on to the early hour’s i had to sleep in the family room and was grateful to have a recliner next to the 2nd loudest snorer in the world (Hi to Mark Jacomb and family if your reading this) Harry awoke about half six and we did all we could to pacify him thank godness for Mummy’s made up stories.

Harry managed for the first time in his little life to wiggle his toes this morning i know this may seem trivial to some but for us it was amazing and the first sign of something new and less than 24 hours from the operation. Harry had a good morning and was talking and for as long as it lasted I felt I had my son back. Any parent who has to look at their child looking limp and motionless and hooked up to a variety of monitors will know what I mean you feel utterly useless and you want to cradle them in your arms but you cannot for fear of hurting them. Harry then found he could turn the tv over by a remote control on the bed and he was happy as Larry. a visit from Dr Park lifted our spirits too. Harry even found time for a skype conversation with our friend Gavin, we managed to get him to drink and suck on some ice cubes all good. We then got the nod that Harry was being transferred to Floor 12 where he will spend the rest of his stay. Once settled Harry crashed out for 4 hours and then woke had some drink through a straw and some jelly then he became a bit humpy no remote for the tv in this room so we was in big trouble nothing would settle him so we had to let him tough it out himself. He stayed upset for about half hour then fell in to a deep sleep and its now 19.25 St Louis time and Harry remains asleep…Time to sign off.

Day 4 (Operation Day)

Harry was up early this morning 4.00am so no need for the alarm i think he sense’s something. One thing we have done with Harry is try to explain to him what is going and explain it in a way that does not scare him. We made our way to the sixth floor of St louis children’s Hospital at 5.30am a quick 10 minute stroll from our apartment and was shown into our private room our home for the next 6 hours then to a ward for another medical and a chat about the procedure. Everybody here puts you at ease and are so caring it is so different ! Harry had to have some medicine and after 10 minutes he was relaxed and we changed him in to regulation pj’s. Then at 7.35am the part every parent dreads…. A slow walk to theatre and then we say our good byes lots of cuddles and kisses and the tears flow from me and Shane but only when Harry can no longer see us and more come when we can no longer see Harry. Now we have put Harry into God’s Trust and the hands of Dr TS Park who will weave his magic with his skilled hands and change our precious son’s future. Now the waiting begins……….

At around 10.30 am the man himself (Dr Park) came in and said how well the operation went and we felt good and Shane managed to put some tears on Dr Park as she hugged him. We waited another hour then we was able to see him in recovery. He was crying which we did not expect but we was told by the nurses that they was trying to get his pain under control so they upped the amount . Harry’s mum Shane held his little hand and did all she could to settle him and managed to reassure him and he started to rest. We then moved up to the intensive care unit where Harry will stay for about 24 hours . He has pain relief drugs on the hour and all the feeds are in to his legs he is laying on his back which he hates but has to stay that way for at least 48 hours because of the incision on his back. One of us will be able to sleep with him and one of us will sleep in the parents room and we can swap when we want. Its 17.20 and Harry has woken as I type and he is upset oh dear.

Day 3 (Monday)

We all slept better and Harry woke around 6am we had a nice quiet morning as the anticipation builds towards finally meeting Dr Park and his team. The good news is that Harry was passed fit for surgery and he will be first on Dr Park’s list with surgery scheduled for 7.30am St Louis time we have to check in at 5.45am . What can I say about Dr Park and his team apart from fantastic professional people, everything Harry is going to go through tomorrow was explained to the last detail we had four meetings with different team members including Dr Park and they gave us so much time and did not rush us and Harry was as good as gold  being examined and put through his paces. The culmination of the last six months hard work is about to be realised and it still feels so surreal for both me and Shane. To everybody that has helped us get to this stage Thank you so much from the bottom of our hearts, this is about to become so real and not a dream we owe you all so so much xxx

Day 2 (sunday)

Me and Shane not slept well and Harry woke at 5am we put him in with us and he had another hour. Harry has had a chesty cough since last week and we are starting to worry about him being well enough for surgery on Tuesday the 1st .He had a course of antibiotics but the chesty cough persists so we will have to wait until Dr Park and his team make a decision on Monday. We took Harry for a nice walk in a park and he did really well on his frame he drags his legs and feet one difficult step after another to the bitter end rather than go in the pushchair it will be that sort of determination that will be needed during Harry’s long journey of physio therapy.

The Journey and day 1

After lots of teary good bye’s and messages of good luck from friends and family on thursday the plan was an early night thursday for an early start friday …. The early night was soon out of the window with all the last-minute packing and checking and double checking then you lay in bed and it finally hits you that this is the eve of a journey of over 5000 miles to take our son to America for an operation that will hopefully change his life forever. Not much sleep to be had when you cannot think of any thing else all the if’s and but’s and maybe’s but this is our only choice it has to work please God tell us we are doing the right thing ?

At 4.45am we woke and we was in the cab on the way to Gatwick by 5.15am everything ran smoothly and we was on the plane before we knew it we was seated ready to take off . After nine and a bit hours and four films and some very sub standard food later we arrived at Atlanta Georgia for our connecting flight another couple of hours and we was on our second flight to St. Louis an hour and eighteen minutes later touch down. We found our way to the taxi rank and loaded up for a twenty-minute journey to our apartment which took forty minute’s the driver we was blessed with was russian, short sighted and deaf and I did have to check at one point that we was in the US and not the USSR. $50 dollars later  and at 11.30 pm UK time 17.30pm St.Louis time we finally arrived at our home for the next 31 day and nights. Apart from an hour and a half sleep on the plane Harry stayed awake for 21 hours before finally crashing at 8.00 pm local time he was absolute star on the journey and made our day easier than we could have imagined.

Day One… Harry woke once through the night but settled quickly and eventually woke at 6.30 am not bad considering the time difference. We then got on pc and phone to contact family which was great for all concerned a bit of exploring and a trip to the most expensive grocery store in the world and a lot of relaxing in the afternoon and that was day one more or less …. if you miss us then we will be missing you xxx

Message From Harry’s Nan

As Harry’s nanny, I just have to make a comment. I want to say how proud I am of my son Chris, and his partner Shane, Harry’s mummy and daddy. They have worked so hard to achieve their goal.
But this could not have happened without the help of so many wonderful people.
Rev Sharon,was the first to give us hope, then the wonderful Katherine and Gavin made our dream seem possible, and gave so much of their time to help us,from there everything escalated.
St Mary’s church in welling, well what can I say about the lovely people there, they have been the most loving generous, kindest, people we have ever met, we are so happy and greatful for their friendship and their love.
Rev Kim and Rev Sharon have both been an amazing support to us all.
Woodside Celtic FootballClub, who my son has played for on and off for years, they have showed true friendship to him, and I truly know my son would repay them with his help without a thought if they ever needed it.
There are so many people that I would like to mention, but I am sure you know who you are, My dearest family, dearest friends, people that we don’t even Know, people from abroad, just wonderful wonderful people that could see a little boy needed help.
Thankyou Thankyou is not enough, but what more can I say. God Bless You All And Keep You Safe Always.
Thursday will be a very difficult day as we say goodbye safe journey, to part of our beloved family, but I know they go with such love and good wishes with them.and I know they go because they want to give their little son the chance to walk, like most of us can.
Your Kindness will never be forgotton.
God Bless You Chris Shane and Harry, hurry home to us soon.
Love You Always. Mum xxx (Marguerite Bailey).

Countdown to America

With just under a week to go before we set off to the states for Harry’s life changing operation we have had so many words of  encouragement and so many good luck messages to all my work colleagues and our friends who took time to speak to me thank you . This morning St Marys church in Welling Kent gave us a very moving send off the congregation their are made up of some fantastic people they cannot do enough for you and always show their support . We will miss you for the next five Sunday’s we are away take care xxx

Kimberly Clark Funday

On Saturday The 15th of October the company i work for Kimberly Clark held a funday to raise funds For Harry and what a great day me and my family and Harry had, their was a five a side football competition with fourteen teams entering congratulations to the team that won and thanks to all the teams that took part especially the ladies team who were great sports. Their was plenty to do to keep the children busy,  bouncy castle, face painting , competitions and a variety of stalls. And a fantastic raffle with some quality prizes. The latest news is that a fabulous £1500 was raised with money still coming in.

Words cannot do Justice to the hard work that’s involved in putting a funday together and  the response by all the people who came and supported us on the day and to those who bought raffle tickets from far and afield it shows how hard certain individuals worked to make it a success and the individuals are The Clarke brothers Steve and Richard and Linda Moore and Emma Cowan all colleagues from work. Special mention to Emma who went above and beyond working extra hours to make this a special day. So thank you to all involved the Management team for being their and to all the people who made it a great day and so many work colleagues who turned up.

So many generous people….Thank You

Some more thank you’s first as the money still comes in and Harry’s aftercare fund continues to grow to ensure the money is available for future equipment and therapy’s that Harry will need in the future. Thank you too the Community Neuro Rehabilitation Unit and too Peter Greg. And too Sue Standing friend of F Gregory. Thank you too  Maggie for the cheque from the Welling women’s Institute. Another thanyou to Bob and Anne for the collection recieved on behalf of the fantastic Sussex Road Ladies Bowling Club from Barnehurst Kent. Thank you to the staff and customers of Red’s Barbers in Plumstead High Street For the Collection and also the staff and customers of the Star Inn Plumstead commen and the staff and customers of  Demon Ink Tattoo Parlour in Welling High Street. Thank you Too Michael Crane and customers of Easycrane Ltd for the fantastic donation of £400. And Anita and Ian Philips for your donation. And to Anna Rirbaumer of Houseproud Nortumberland Heath Erith ZQ!

September/October update

To start with i have to say a massive Thank you to my four work pals Andrew, Mark , Ryan and Jonathon who helped me conquer the 84 mile Hadrians Wall journey i could not have done it with out you all it took us around 32 hours in just over 3 and a half days you should be immensly proud of your efforts.

Thank you to Becky Saunders for arranging the Quiz nightand for the money raised and to the Essex Fairway Trust for their recent donation. Also Nanny Bailey’s Friend Rosemary and the St. Andrews Ladies open Group for their recent donations.

Thank you to Richard for setting up the Woolwich poly school Judo tournament which made Harry £214.00

A big thank you to Vanessa Gulyas and her lovely family including Alan and Stuart Clarke, Fiona and Beryl and their children for the collection at Vanessa’s recent birthday Party.

Another thank you and well done to a work pal Martin Allen who completed the Run to the Beat Half  Marathon at the o2 greenwich with all sponsorship money raised going to Harry, great stuff Martin.

And a big Thank you to Terry Wheeler for our most recent event held at Clancy’s Public House in Woolwich Terry went to every effort to ensure this was a success and a success it was Terry managed to get lots of auction and raffle prizes and also the Deputy Major turned up we raised over £600 on the night thank you again Terry you should be proud of yourself  and thanks to John the landlord and Anne and Barry.

 

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