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Author Topic: Reece goes away for Christmas. Again.  (Read 400282 times)
Shogun112
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« Reply #1710 on: May 18, 2011, 10:18:42 PM »

Great news Mo xx
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Redbull
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« Reply #1711 on: May 19, 2011, 05:03:58 PM »

Great news Mo xx

 
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outragous76
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« Reply #1712 on: May 19, 2011, 05:46:36 PM »

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The_nun
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« Reply #1713 on: May 20, 2011, 09:45:45 AM »

National Green summat or other day today at Reece's School. The children were all told to go to schoolin something green.

All the other kids are there wearing a green T Shirt, Reece turns up in his Incredible Hulk outfit.
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cdw1111
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« Reply #1714 on: May 20, 2011, 09:48:54 AM »

National Green summat or other day today at Reece's School. The children were all told to go to schoolin something green.

All the other kids are there wearing a green T Shirt, Reece turns up in his Incredible Hulk outfit.

Made me smile
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« Reply #1715 on: May 20, 2011, 09:49:15 AM »

National Green summat or other day today at Reece's School. The children were all told to go to schoolin something green.

All the other kids are there wearing a green T Shirt, Reece turns up in his Incredible Hulk outfit.

Don't make him angry....
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The_nun
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« Reply #1716 on: May 20, 2011, 12:33:43 PM »

Thanks for all the responses from Tony's post. Much appreciated.

How we have come through this  roller-coaster of years I will never know,  well never mind us,  Reece where the heck does he find the strength from. There's not a lot gets past him, he is very wise and incredibly funny for his age. Takes it all in his stride.
Monday at Hospital all he was worried about was going back to theater, he thought we were tricking him until I promised him cheesy chips for his tea then he knew Grandma wasn't fibbing.

 The joy on Mr Puntis's face when he saw Reece is indescribable, he is so very pleased with Reece and the success story he has become.

I always find it a little hard to post on long term plans as they seem to change from week to week then I think I looked silly for posting when it changes again so quickly, hopefully the plan in place now will not have to change.

The Holiday.

We will not be taking any TPN on holiday with us, but will still take intravenous fluids and Gastro feeds for him. The intravenous is to ensure he doesn't dehydrate in the heat and the Nutrini (gastro feed that goes into his tummy via a peg button) gives him a few calories, these will be infused like at home over 10 / 12 hours per night. Depending on how he is I might not give the intravenous ones every night.

In himself he does get tired quicker now he is off TPN, which is not ideal for his holiday but Mr Puntis decided not to put him back on for his holiday, which would have boosted him up thus he would enjoy it more I personally think, but that is the decision so that is the way it will be. I really do worry too much.

Thomas Cook came back to us yesterday after I had sent off the medical equipment list and have increased the medical hold luggage to 40 kg free, this helps a lot although we did have to pay for 4 on the booking day. At least now we will have ample room for it all. Saying this, getting to the airport is somewhat an ordeal, there is no way all 4 of us plus up to 6 suitcases will go in our old banger so I still have to suss that side of it out yet. We were going to all go on the train but too much stuff plus it would add even more journey time for Reece. Thomas Cook can not increase our hand luggage past 5kg which is a little worry as we have to take emergency medical equipment and pumps on board with us.

The Nutrini supplier is transporting that side over and the person who we pick the keys up from have said she will help all she can by accepting delivery and keeping it safe until our arrival. We still have to take some on board with us just in case it gets lost along the way.

We have letters galore off the hospital to travel with in order to show UK/US customs etc, to get all the meds through. There has been so much to think about and it is nerve racking thinking I may have over looked something.

Make A Wish have donated 3 day passes for Magic Kingdom, 2 day passes for Universal and 1 day pass for Seaworld, we have to collect them on different days from the individual parks and can use them anytime over the two weeks we are there.

As we know he wants to swim with the Dolphins so I contacted Discovery Cove via email to ask if there would be anyone that could take photos of him in there as Stacey will be going in with him too but at £180 pp for a swim ticket and £105.pp for a non swim ticket it seems a bit steep to pay for myself and Darren to go in as spectators. Alas they never returned my email, I suppose they have to treat all the same. I shall be using Mr Anons ( thank you again) donation towards this day I think.

Reece is so very excited non stop talking about it, he has a calender which he marks off the days by stickers. He also chose some Spiderman sun glasses and reckons he is going to wear them and his Spider top so that when he sees Spiderman he will look cool. I hope for my sake he is there lol.

I am going to try and post a couple of pics from Tuesday as he went on a school trip dressed Victorian.

I would just like to take this opportunity to thank each and every one of you for making this trip possible because without a doubt it would not have been happening without all your help.

Thank you all so very much.

Maureen. xx
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« Reply #1717 on: May 20, 2011, 12:35:52 PM »

.
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The_nun
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« Reply #1718 on: May 20, 2011, 12:37:06 PM »

.
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The_nun
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« Reply #1719 on: May 20, 2011, 12:37:41 PM »

.
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The_nun
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« Reply #1720 on: May 20, 2011, 12:38:45 PM »

I am not too hot on this photo posting stuff.
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Claw75
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« Reply #1721 on: May 20, 2011, 12:40:17 PM »

brilliant!
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« Reply #1722 on: May 20, 2011, 12:43:17 PM »

Just to give you a little insight to the organizing and carrying eqipment. This is part of one of our medical letters.


Reece has complex health care needs and has a Broviac central venous
feeding line and a gastrostomy feeding tube to give nutrition and fluids
to maintain his health and well being. Reece’s mum Stacey Dunne and
grandma Maureen McDonnell will be carrying medical equipment and
supplies with them whilst travelling abroad including:

Hand Luggage - carrying essential medical drugs and fluids to maintain
hydration and well being whilst travelling
In a cool bag with ice pack Approximate weight ………..kg
v   IV bag of Parenteral Nutrition solution (approx volume 1250mL)
v   Gentamicin & Heperin prefilled syringes (Approx 20mL)
v   Enteral syringes prefilled with water

In Hand luggage
v   Intravenous infusion pump, carry pack and charging lead
v   Intravenous fluid 500mL bags x 2
v   Intravenous feeding giving sets
v   Prefilled syringes of Sodium Chloride 0.9%
v   10ml ampoules of 0.9% Sodium Chloride
v   Gentamicin & Heperin ampoules
v   Enteral feeding pump
v   Enteral syringes
v   Enteral feeding tubing
v   Nutrini enteral feed for flight 3 x 500mL packs
v   Dioralyte solution (approx 400ml)
v   Sterile water (approx 100ml)
v   Oral medication
v   Dressing packs and sterile gloves
v   Alcohol hand rub gel
v   Sanicloth 2% Chlorhexadine wipes
v   Smart-sites
v   Surgical tape and dressings (Tegaderm, Mepore & Parafilm)

Hold Luggage
v   Battery pack and charging lead for IV pump
v   Parenteral Nutrition solution, stored in cooler box with ice
packs to maintain temperature at 4°C during transportation
approx weight …………kg
v   10 x 500mL bag,of Intravenous fluid containing 5% Glucose 0.45%
Sodium Chloride & 10mmol KCL
v   Intravenous feeding giving sets
v   Syringes and needles (various sizes)
v   10ml ampoules of 0.9% Sodium Chloride
v   5ml ampoules of Heparin Sodium 10 units per ml
v   Prefilled syringes of Gentamicin in cool box with parenteral
nutrition
v   Prefilled Sodium Chloride 0.9%
v   Urokinase 25 000ui + Diluent
v   Absolute Alcohol for injection
v   Dressing packs and sterile gloves
v   Alcohol hand rub gel
v   Liquid soap
v   Oral medication
v   Azowipes
v   Sanicloth 2% Chlorhexadine wipes
v   Smart-sites
v   Surgical tape and dressings
v   Enteral syringes
v   Enteral feeding tubing
v   Nutrini enteral feed for flight 12 x 500mL packst

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celtic
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« Reply #1723 on: May 20, 2011, 12:48:28 PM »

Great stuff mo, 7 seater cab should get all your gear in hopefully.

Looking forward to the pics.
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Keefy is back Smiley But for how long?
The_nun
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« Reply #1724 on: May 20, 2011, 12:52:43 PM »

Great stuff mo, 7 seater cab should get all your gear in hopefully.

Looking forward to the pics.

I'm not, have you seen my efforts.
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