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Author Topic: Reece goes away for Christmas. Again.  (Read 400364 times)
The_nun
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« Reply #645 on: June 17, 2009, 03:46:25 PM »

Tx for the replies.

Rooky9 also mentioned the push kinda bike thingy, good idea me thinks too. Re: the story we thought about that when I spoke to the teacher but thought at this age it would not be a good idea to pin point it down to Reece as this could make him feel even more different. For now we will ride the waves but look into push-bike handle jobbie.
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« Reply #646 on: June 19, 2009, 01:13:09 PM »

Finally, after appeals and getting a board involved and some help from Antonino explaining to them Reece's condition in more detail Stacey has today been granted a mobility car and some extra money to assist her in his needs. This will help so very much, especially these next few months as we drop his TPN nights, this week, well the last couple of days, he is just dropping asleep all the time, straight in from nursery to bed, it must be a combo of loss of essential nutrients from lack of PN and he also has hay fever, poor lad, as if he don't have enough to cope with. It will make our lives a lot more easier and allow us more time as at the moment with only having one car we do a hell of a lot of milage.
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« Reply #647 on: June 19, 2009, 01:30:20 PM »

Finally, after appeals and getting a board involved and some help from Antonino explaining to them Reece's condition in more detail Stacey has today been granted a mobility car and some extra money to assist her in his needs. This will help so very much, especially these next few months as we drop his TPN nights, this week, well the last couple of days, he is just dropping asleep all the time, straight in from nursery to bed, it must be a combo of loss of essential nutrients from lack of PN and he also has hay fever, poor lad, as if he don't have enough to cope with. It will make our lives a lot more easier and allow us more time as at the moment with only having one car we do a hell of a lot of milage.

Excellent!
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« Reply #648 on: June 19, 2009, 01:41:53 PM »

Finally, after appeals and getting a board involved and some help from Antonino explaining to them Reece's condition in more detail Stacey has today been granted a mobility car and some extra money to assist her in his needs. This will help so very much, especially these next few months as we drop his TPN nights, this week, well the last couple of days, he is just dropping asleep all the time, straight in from nursery to bed, it must be a combo of loss of essential nutrients from lack of PN and he also has hay fever, poor lad, as if he don't have enough to cope with. It will make our lives a lot more easier and allow us more time as at the moment with only having one car we do a hell of a lot of milage.

Not before time. Result!
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« Reply #649 on: June 19, 2009, 02:05:54 PM »

Always a fun time going for what you are entilted to but well done on getting there,hopefully Stacey does claim carers allowance? and does reece qualify for disability living allowance?
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« Reply #650 on: June 19, 2009, 03:58:14 PM »

That's absolutely BRILLIANT news!!! 
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« Reply #651 on: June 21, 2009, 07:40:02 PM »

That's absolutely BRILLIANT news!!! 
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The_nun
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« Reply #652 on: June 25, 2009, 08:15:44 AM »

Hay fever is kicking in pretty badly he is not quite himself bit grumpy and lost his appetite which is not too good as this morning his weight was a mere 14.1 which is the lightest he has been in awhile.Hoping it is due to the hay fever and not the 3rd night dropping TPN. Plus saying this he did go on a long walk last night with Daz whilst I was at work. Antonino is away fro 2 weeks holiday so can not ask him for advice. I have decided not to send him into nursery again today, he had yesterday off too, this way he won't be pushing himself too hard. He is on Anti-histamine and Cetirizine but this does not seem to be helping.
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« Reply #653 on: June 25, 2009, 01:04:29 PM »


My wife gets hayfever pretty bad, and pills don'tseem to work.....and so is trying this after reading some good things about it:

http://www.lloydspharmacy.com/wps/portal/products/hayfever/hayfeverreliever


It is cheapest at lloyds....but also available elsewhere...see below. There are reviews on the amazon site to read.
Might be worth a try.....obviously best to check with your specialist first.

http://www.amazon.co.uk/Medinose-45030-Hayfever-Allergy-Treatment/dp/B000BI69UQ
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The_nun
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« Reply #654 on: June 26, 2009, 08:38:45 PM »

Had to drive over to Manchester today to pick up the med's that Huddersfield will not fund but Reece has to have. They have moved to the new Children's Hospital, it is so nice, all clean and spacious lets just hope it stays that way. One of the nurses showed me around, it is just so very much better for long term patients, much more private. own rooms with private bathrooms, there are some shared wards but they are 4 to a room which is way better that the Victorian standards we are used to. I asked why there were so many single rooms empty, she said they have not got the funding to use them. So there they are with these fantastic facilities but can not use them WTF???
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The_nun
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« Reply #655 on: June 26, 2009, 08:43:06 PM »


My wife gets hayfever pretty bad, and pills don'tseem to work.....and so is trying this after reading some good things about it:

http://www.lloydspharmacy.com/wps/portal/products/hayfever/hayfeverreliever


It is cheapest at lloyds....but also available elsewhere...see below. There are reviews on the amazon site to read.
Might be worth a try.....obviously best to check with your specialist first.

http://www.amazon.co.uk/Medinose-45030-Hayfever-Allergy-Treatment/dp/B000BI69UQ
Thanks Ripple but  just don't think he would put it up his nose, still might try it though whilst it is on offer. Food time is now a constant battle as he really is going off food. Hopefully just due to Hayfever. I have decided to give him Monday  nights TPN as we do not want his weight to drop any lower. Antonino is back off holiday the Monday after so we can see him on the Tuesday to discuss the way forward.
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« Reply #656 on: June 28, 2009, 10:06:34 PM »

Hi Mo
I'm not sure if this will work with Reece and his appetite, but a few of my friends swear by having a spoonful of locally produced honey daily. The usually do from the start of year though, builds up a tolerance to the strains of hayfeaver. May be worth giving a go, if not now then next year.
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The_nun
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« Reply #657 on: June 28, 2009, 10:40:58 PM »

Will try it, and inject it through his gastrostomy as he does not like honey.
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StuartHopkin
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« Reply #658 on: June 28, 2009, 10:48:39 PM »

Hi Mo
I'm not sure if this will work with Reece and his appetite, but a few of my friends swear by having a spoonful of locally produced honey daily. The usually do from the start of year though, builds up a tolerance to the strains of hayfeaver. May be worth giving a go, if not now then next year.

I have heard this works, but cant say ive ever tried it.
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« Reply #659 on: June 28, 2009, 11:03:52 PM »

Hi Mo
I'm not sure if this will work with Reece and his appetite, but a few of my friends swear by having a spoonful of locally produced honey daily. The usually do from the start of year though, builds up a tolerance to the strains of hayfeaver. May be worth giving a go, if not now then next year.

I have heard this works, but cant say ive ever tried it.

this might help stu





hope everyone is good Mo  Kiss
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