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Author Topic: Reece goes away for Christmas. Again.  (Read 400170 times)
sofa----king
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« Reply #615 on: March 04, 2009, 06:55:12 AM »

keep it up reecey boy.,.,.,.,.,did you see the dinosaur with one eye.,.,.,.,he was a "doyouthinkysaurus".,.,.,.,
that was poor lol.,.,.,.,.,
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« Reply #616 on: March 14, 2009, 11:32:14 AM »

A little update.

Antonino has changed his mind again and has decided to try again at getting him off his TPN. So tonight he will be machine free. One day a week to start with, hopefully this time they wont rush him as much. He has been eating quite well up to yesterday but he does have his off days now and then. He comes back here today to sleep so Grandad and I will hopefully get him interested in nosh again. The problem in the morning is that nursery starts at 9 am and he only comes off his machines at 7.30 / 8am, then it is a mad rush to get him dressed and fed, as he eats very very slowly, do his dressing on his central line then the walk to school is 20 Min's from Stacey's or 20 min drive from here. Hopefully once he is off TPN again it wont be as much of a rush. He sometimes tends to miss the first few minutes of school which is not good  as it is when they all meet and get their name badges etc, so he tendds to feel left out quite a bit really through no fault of his own.

As most of you know Reece goes through a vast amount of nappies which is a massive cost. We were told that when he reached 3 Stacey would be entitled to some help in the cost of them but unfortunately the goal posts moved and it is now 4 when a person is entitled to help. So he had his incontinence test last week and was granted the full allowance, 4 a day. This will help a little, although at the moment he can go through anything up to 15 plus, which is better than it was, it used to be far more. Stacey also tried again for a mobility car, but with Reece's illness being so rare it seems they don't really acknowledge it so she has been refused. Her community nurse said she just can not understand how they can refuse so will make some enquiries. Mad really, but that is that I just wish we were richer and we wouldn't have to ask for assesmen ts at all. BTW this is not a begging post lol, it is just explaining the trials and tribulations.

Reece is back in nursery 5 mornings a week but does not mix too well with the other children, he says they are very babyish, lol bless him, he has had to be with adults so much it is hard for him now. He says he can't understand what they are saying to him so tends to want to play with the teachers instead ( which could be a reflection from instances like that in paragragh 1) as the conversations are more interesting to him lol. He will be moving up to BIG school this year so the nurses are starting to train the teachers how to care for him and his line in preparation for his move. It is important that he is not felt to be different from the other children although it is quite clear that he knows he is. When we take him to play gyms his confidence is very low, he is so scared of hurting  his line area so Darren tends to have to go on everything with him. I can not wait to see him go into a pool or the sea and splash till his hearts content but that will only be if and when he gets his line pulled once he is free from TPN again.

Talking of TPN I have been researching it again as now he is back on it there is a great risk that his Bilarubin levels will rocket and his livers fail again which is what we really do not want to happen. Anyway there is a relatively new alternative to it called Omegavin, it is being used on children in the USA and I have been in touch with some Doc's over there that use it. They told me they have given over 60 thousand infusions of it to kids with no damage to livers. They have also given it to kids with poor livers and it has repaired them. One hospital reports an infant mortality rate dropped from 90% to 0. So I told Antonino about it, he basically said it is not used over here. Back I went to find out if it was and YES it is, in FACT it is used in Great Ormand, Birmingham and a hospital in Manchester the Boston Doc told me. Anyway Antonino has now said IF Reece's livers start to show deterioration he will rethink about the Omegavin. We want it now tbh not when he gets poorly. I think prevention is better than cure. I am not sure if it is the cost or if it is just that it says it is for adults only, the supplier that I have been in touch with said that the prescriber has to go against the label instructions just like they do in the USA and some hossy'd here and give it to children.

A big thankyou to GreekStien, (whom I met last week at DTD, lovely fella x) for the gifts, they arrived safely this morning, though what the postwomen thought of the addressee,  To Maureen The Nun, I don't know especially when I answered the door in just a towel lol.

I will make the effort to update more often as I am going to start printing it off then when Reece grows up he can read it all, so sometimes it may not be that interesting for some of you but it will keep those of you that have polity asked for more updates informed.
« Last Edit: March 14, 2009, 11:34:45 AM by The_nun » Logged

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« Reply #617 on: March 14, 2009, 05:05:22 PM »

Lots of different aspects to take on board with this post. Thanks for the update. Know we are thinking of you all and wishing Reece, and all of you, better progress, in all areas, than of late. 

Christian & Helen
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« Reply #618 on: March 14, 2009, 05:10:03 PM »

Hi Maureen,

I couldn't remember your name until about 5 minutes after I'd posted the package so I thought Maureen 'TheNun' will do. lol.

Let me know if the titles are ok or there are any Reece would prefer and I'll do my best to send some up every few weeks.

Cos
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« Reply #619 on: March 22, 2009, 08:41:36 PM »

Had a good day with Reece, well I think I can confidentley say best ever morthers day. Nowt special really but I loved it, I got up cooked breaky, tried to make it exciting in order to get the little man to eat, which he did. Very important that he eats more today as he was off TPN last night. He then went out to the garden to find worms, this was a lovely sight as Reece does not always have loads of get up un go, but today he so enjoyed his outside time. We then had dinner and post dinner I received my mothers day cards. .....................Stacey asked Reece what he wanted to say to Grandma..


In Reeces words it said .......I love you more than Dinosaurs....

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« Reply #620 on: March 22, 2009, 08:50:09 PM »

awww sweet
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« Reply #621 on: March 22, 2009, 08:53:13 PM »

"In Reeces words it said .......I love you more than Dinosaurs"....

Trust me, thats praise of the highest order from a young lad Smiley
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« Reply #622 on: March 22, 2009, 08:55:46 PM »

"In Reeces words it said .......I love you more than Dinosaurs"....

Trust me, thats praise of the highest order from a young lad Smiley

I struggled to keep a dry eye, and I am a hardened woman lol.
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« Reply #623 on: March 22, 2009, 08:56:46 PM »

 Grin
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« Reply #624 on: March 22, 2009, 09:30:39 PM »

N1 and a boys love for dinosaurs is HUGE xx
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« Reply #625 on: March 22, 2009, 09:33:04 PM »

awww sweet
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« Reply #626 on: March 22, 2009, 11:43:37 PM »

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« Reply #627 on: March 26, 2009, 10:39:19 PM »


Reece has taken up gardening. Great pic, eh?

He's doing "so-so". He has no appetite, but eats to keep Nanna happy. His weight is stable now, but he needs a bit of meat on him, so it's a struggle.

Maurren is hoping to take him to a big Dinasours exhibition soon - he's Dinosaur mad.
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« Reply #628 on: March 26, 2009, 10:48:16 PM »

Nice pic. What an inspiration he is.
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« Reply #629 on: March 26, 2009, 10:49:06 PM »

Nice pic. What an inspiration he is.

good to see the little fella up and about..
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