Reece goes away for Christmas. Again.

[Kev B]

Fantastic news have a wonderful time.

[The_nun]

Would like to Thank Technologic AkA Jack for his very very kind donation which has been received. ((((    ))))  xx
 
Getting there now, been having long chats on the phone to the medical team again today, wowser, there are many letters we have to carry, some for Airlines, then customs, explaining what meds we are carrying and for permission to enter the USA with them. Goodness me there is also megga amount of intravenous fluids to take with us, luggage is going to be well heavy lol. We have to take it as the USA will not allow it to be delivered over there for the second week and TPN only lasts one week so we will put him on the fluids the second week.

It has more or less been decided that he will remain on three nights TPN until after the holiday now, so as not to risk him being low or poorly out there, like i said the second week intravenous saline instead of the TPN. I like this idea as we dont want to run the risk of any downfalls out there. We want him to be as full of energy as possible.

Traveling out on the flight he will be on a enteral feed via his gastrostomy, this will keep him from getting dehydrated during the flight, then give him TPN when we arrive to boost him up.

Nervously excited.

He goes back to theater this Thursday, only a day one to remove some stitches where they cut off his granulation from his old infected line when he had his new one a few weeks back. He needs to go under for this as the stitching was a little more than your usual stitches. He will not be impressed to say the least.

His weight is staying around 17.3 to 17.6 atm. Fairly happy with this taking into account he had an active school holiday week, incl ice skating lol. plus the extra night being dropped off TPN. Just a niggling feeling he is not 100% at the moment but he can do this then bounce back the next day.

He is fast on in our bed right now as I am on lates and he wanted to sleep over tonight and be with his Grandad, who can say no, not us for sure.

xx

[The_nun]

Getting things sorted slowly but surely.

Some of his feeds are going to be transported over there for us FREE. by the company that dels here. We still have to take his first weeks TPN with us, thats is if he is still on it as GOOD NEWS.....he is managing on two nights a week for the last two week. Then Nutrini the other nights over 10 hours whilst he sleeps. Not lost weight weighed in today here at 18.3 but he was still in uniform, so take a little off for that and we are pleased. We will still have to take around 11 to 14 bags of intravenous fluids with us so that he doesn't dehydrate.

Also on the make a wish front, they might be able to help us with some of the ticket entry's as we have already paid for the accom & flights ( well you guys have), which they would have helped with apparently subject to assessment.  But the accom they put you in would have been room only ( i think) but with free food, this would not have been any use to us as we need to feed him as and when he gets hungry so wouldn't want to have to trail him out late if he was tired after a full day out. If they dont help, Laxie has been onto Disney customer relations and they will grant some tickets for 2 adults and 1 child.

Think we will have to go for a Dodge Charger for the car as we need plenty of room to transport all luggage from the airport to Kissimie. Lookslike a cost of £330 for 2 weeks inc two drivers and a tank of fuel. 

[The_nun]

Oh yes, forgot to say, Leeds decided they want to try and get him off not leave him till after the hol. Up to them at the end of the day.

[tikay]

All good Maureen!

xx

[The_nun]

All good Maureen!

xx

Thank you Tony,

xx

[Laxie]

That's excellent news Maureen!  So glad he's feeling better.

Any chance the make a wish crowd would cover the price of the rental car?  No harm in asking seeing as it's required for all his gear.

Hugs to the lot of ya.  xx

[The_nun]

Joyce, the lady we rent our apartment from, ( been a friend for years too) has lent us a cam corder for the holiday. So pleased, just don't want to spend too much time filming as want to see him in real life experiencing it all, but well pleased with this.

[Laxie]

How's Reece getting on?  Hugs to the lot of ya.  xx

[The_nun]

Weighing in around 17.8 atm. Very sore tummy bright red plus new line is very sore. So starting on some treatment for that but taking till Monday for the chemist to get it in.  Alsohis bum is very very red. He still runs round playing etc. If it were one of us we would be up our trees with it all.  Thank-you for asking Dawn x

[mondatoo]

Xxxx "hugs" 

Hope everything is well.

[The_nun]

I know updates on here are few and far between this is due to me not having very much free time atm. I am working most of my rest days. I will,  however get round to doing a decent one with some pictures as soon as I get a spare few hours as it takes me that long to shrink pictures etc in order to post them ( took me 3 hours this morning to print off a few easter bunny hunt pic's for his trail around the flat doh...).

Today I am posting as I have been informed that a very kind person has made a donation to Reece's holiday fund but wishes to remain anon.

Thankyou Mr Anon. Your a very kind person hopefully now the swimming with the dolphins will be possible too.

Highest Regards, from us all. XXXXXXXXXXXXXX

[celtic]

Less than a month to go!

All going to plan?

[tikay]

I think Maureen is a little busy right now, but the news on Reece is EXCELLENT - his bestest news EVER, in fact.

More soon, I asked Maureen if the news could be Posted, but she's not replied yet.

All gooooooooooooooooooooooooooooood!

[GreekStein]

Wiiiiii