Reece goes away for Christmas. Again.

[Kev B]

Sounds really positive Maureen, so pleased for the litlle fella. 


 Was good to see you and Darren at the weekend, you are both looking great and of course you are obv still the best poker player in the house.   

[The_nun]

Reece has been doing very well of late, he has his ups n downs and is almost always in some sort of pain / discomfort due to the large dilation. We just want to get the next op over with but before that we have taken Haven up on the offer of a free holiday so we set off to Gt Yarmouth for a week in May, we really fancied Cornwall but fear that is a little too far to take him.

Our new nurse at Leeds, Gill, is an absolute gem, she rings us all the time and spent almost an hour on the phone with me yesterday organising delivery of all Reece's medical equipment to be delivered to Haven. Haven are also going beyond the call of duty to assist us. She has also contacted Yarmouth hospital to let them know we are in the area and also of his needs.

This will be Reece's first holiday, we took him to Wales last year for 2 days but he wasn't in best of form, so a whole week away will be great for him. He will also be allowed to go into a swimming pool for the first time ever, only for half an hour, then we will have to change his dressing to make it sterile again just in case any water has leaked into his access area for his central line  through his water proof dressing. All in one swimsuit will be need so that he doesn't get the stares due to mass scaring.

Stacey rents privately so therefore has to pay towards her rent herself out of Reece's disability money, we thought we had found her the perfect home, run by agents so there should be no trouble and Reece could finally settle and get a bit of normality in his life, but alas this was not to be the owners, after the 6 month agreement was up, have increased the rent to £595, she cant afford that so she is moving in with us until we can find her another home. OK so they said to us when she handed in her notice there that they would go back on the increase if she stayed another 6 months, but to be honest the jobs just don't get done, Whitegates do their part but the owners always know someone cheaper, or they say with it being a newish house it is still under  guarantee, so she has to wait ages, like at the moment, she is without the boiler, so no hot water or heating and has been since Sunday as they can't fix it allegedly , this is not good especially for Reece. So anyway, home they come,  it will mean shuttling Reece to school the other end of town and plus him being up heaved again, but hey ho worse things happen.

Also Stacey is doing very well, she is on a course at college plus does 2 days charity work with youths, she loves it but i fear she takes on too much what with the op coming up I think she will struggle, but like she says, she wants something behind her, her aim is to become a social worker.

Well hope we get lots of pic's on the holiday that we can share with you all. One last note, his Disney World holiday money that you have all got him will not be used at all for this break. That is all up to date now, apart from the Doyle book money that will be added as and when.

EDIT, she doesn't pay all that herself she does get some help.
Xxxx

[mondatoo]

Hope you have a great trip,look forward to reading updates/pics

[The_nun]

Cheers Mond, xx

[cia260895]

a well earned break if ever there was 1. 

  to Gill And Haven well done both.

Have a great time all and just enjoy 

[Dingdell]

Have a lovely time Mo - lost of pics please xx

[Laxie]

Have a lovely time Mo - lost of pics please xx

This!  xx

[Claw75]

Have a lovely time Mo - lost of pics please xx

This!  xx

+ another!

[technolog]

Nice to hear things are going well Maureen and I hope you all have a great holiday.

[ripple11]

Have a lovely holiday......enjoy!

[Kev B]

Hope he has the most fantastic time. Looking forward to the report and pics.

[Rooky9]

 

Send hima roar from me!

x

[The_nun]

Roar received Rooky9. x

Well they moved in Monday, Reece is very settled, actually enormously happy. Down side is the travelling to & from school, once his statement get sorted out, been refused one twice but now at Leeds the medical team there said there is no way he will not get one, once again it is the local authority not recognising just how serious his condition is with it not being that common. Anyway once that is sorted he would be entitled to home to school transport, but having worked for that department before I started on the trains I am reluctant to let that happen. With us living so far away from his school it would be very likely that Reece would be one of the first to be picked up in a morning and possibly last to be dropped off on a night, thus incurring an even longer day than necessary. For the time being we will stick to doing the school run between us.

He has not got a great appetite still, but that is to be expected with his distension so we try not to push him. Hopefully post op this will improve. I weighed him last night he was 16.9 k then after his TPN free night this am he was 15.9, all fluid I guess.

Anyway, apart from the impending op life is not too bad atm.

[cia260895]

Gr8 news Mo  xx

[The_nun]

The dreaded letter arrived this morning.

The op will be done on the 25th May, he is to go in on the 24th. Like before we still do not know if they will be able to perform the S T E P until they open him, still only been done 5 times in Leeds from what they told us. If not the S T E P it will be tapered, which they do not want to do as it will mean him losing some of the bowel which he has been through so much to gain. Just going to do my best to block it out now until after the holiday as it is making me feel very sad. Anyway, it has to happen poor lad.