Reece goes away for Christmas. Again.

[sofa----king]

so glad he's feeling a bit better mo.,.,,,.

[Harmony26]

Nice pic.

Hope you all enjoy the dinosaur exhibition.

B&H

[Laxie]

Been thinking of the wee Lad.  How's he getting on lately?

[The_nun]

Reece is doing quite well at the moment. When he first returned to TPN 7 nights it was like we had a perfect healthy boy, one so full of life that it was hard to believe how poorly he had been. It must have been a great feeling for him to feel normal for once instead of so lethargic all the time. Anyway we have been enjoying his new found energy so very much. Taking him out walking and to parks etc, it is weird to see him want to walk and run.

He has been doing all that still after dropping down to 5 nights TPN over recent months, this week we dropped his 3rd night, we saw quite a difference in him. He seemed a bit moody and I have to think it must be because he may be feeling a little like he was last time we started to test his ability to do without TPN. I truly hope this is just a short term feeling and not going to get worse as we try and push him for his 4th night off which is in the beginning of July. His weight fluctuates between 14.5 - 15.3kg , which is not great for a 4 year old but is better than it was. His eating is good considering his diet consists of very repetitive foods as he is reluctant to try new ones out. He has to be Gluten, Wheat, Soya and Dairy free, hard to cook a varied diet on such limited foods for a four year old to eat. Mash he loves but I do this with his dairy free butter. Boiled eggs are his favourite but his dietician says we must limit these as they will make him poo more often, I personally can not find any evidence of this, anyone else know if they do or not?.

He attends Nursery 5 mornings a week, this is getting to him a little as the other kids innocently tease him a little, they are only young so not too sure what can be done, I have had a word with they teacher but she reckons not to have seen anything or heard anything. Basically he goes to school in a push chair because it is quite a distance from Stacey's home and he can't walk that far and cope with nursery as well although like I said previously his walking and energy levels have greatly improved but a little slower after no TPN nights. The other kids see him arriving this way and call him a baby, I have been trying to figure a way round this but apart from him walking the last leg of the journey not a lot can be done as the pushchair still needs to be pushed empty. The other problem is that the kids say they don't want him to play in the games as he has to have a rest half way through. these things may be minor to us adults but to a 4 year old they can weigh pretty heavy. We have had to appeal to get him into infant school near to Stacey's home as the one they offered was a long way off and would be very difficult to get him to on time. It takes quite a while to get him off his machines, washed dressed and breaky sorted, it will be a push to get him to the local school never mind the allocated one, we got him in the local one due to the allocated one having stairs and Reece can't handle stairs too confidently, this is possibly due to scar tissue from so much surgery so Physio is being set up for him to see if that helps at all.His assessments show he is very advanced for his age which is good and makes us very proud  of him for not letting his illness get in the way.

He knows what Kev and Chris (Rooky9) has done for him, obv what you have all done for him, and we have told him that it is for a trip to Disney land when he is off his machines. He is now constantly talking about it. I have also  booked him tickets for the Walking with Dinosaurs tour in Sheffield in July, they were over 100 quid just for 2 with booking fee etc so just him and Darren are going to go. That has come out of the money from last years pocket, the money that Chris and Kev raised is not being touched until we get him on holiday as we will need every penny we can muster for that. Talking of which, Antonino aims at getting him completely off by October / November this year but as always I can not build my hopes up as I am so scared of seeing him suffer like he did in January. I wish there was a miracle cure I would give anything I had to make him right, all you parents out there will know the usual prayer that us parents / grandparents say, goes some thing like this. Please God if you are there take my life , my sole but don't make this little fella suffer, make him better and let me suffer instead. I am sure he don't listen up though.

Here are a few recent pictures.

[boldie]

He's a champ, so he is.

[The_nun]

Trying to resize some more.

[tikay]

Nice Post Maureen, thank you.

This is a tough one, but I know you know me well enough, so I'm going to say it.

He attends Nursery 5 mornings a week, this is getting to him a little as the other kids innocently tease him a little,

Teasing him is not something you can do much about - but worry not - he'll be OK, kids are incredibly resilient, & Reece especially so.

A little story for you. As a kid between the age of 5 & 12, I had "development issues" - mostly mental, but physical, too. So I know all about being teased, & for that matter, being bullied, too. My parents never knew - I had speech & articulation issues - and anyway, my Step-Mother & Father, in very different ways, contributed to the mental & physical bullying.

So, I endured a good few years of teasing & bullying. And you know what, I found my own way to handle it - kids do, if you leave then to their own devices, & don't wrap them in cotton-wool. Being over-protective of kids is, imo, just laying down problems for their adult life.

By the time I reached adulthood, I had learned how to handle adversity, life bumps & bruises, & I'm a far better man for it.

Now, Reece does need special care, I know, as he's still physically frail, but teasing is mental, not physical, & he's already shown more mental fortitude than most grown men.

Reece will grow up to be one of those guys who can handle life's problems, because he learned how to deal with them whilst young. He absolutely will.

[The_nun]

Not too sure if this works but this is a link to an album.  http://www.kodakgallery.co.uk/BrowsePhotos.jsp?collid=4171229980233&UV=114380801942_6855129980233

[Colchester Kev]

yup that works 

Who gets to pick up all the toys from the garden ??


Love the one in front of the lappy

[The_nun]

Me usually Kev, Moved last week so most of them can now be stored in the garage, he loves it, like his own little toy store in there. The hardest part is finding where he puts all the animals and Dinosaurs as he likes to hide them in trees etc and play acts constantly

[GreekStein]

that reminds me, I will send up some more mags tomorrow.

Any titles you like too Maureen?

[The_nun]

that reminds me, I will send up some more mags tomorrow.

Any titles you like too Maureen?

Tx, did you like the piccy of him with the mags, that was the one i mentioned to you. I'm OK but tx, just look forward to Reece's TYVM. xx 

[GreekStein]

OK! magazine it is then Mo!

[cia260895]

Good to see the little fella is up and about  

just a suggestion,
on the school issue have you thought about doing a little social story about reece  and get his teacher to show to the class and get reece to answer any questions they night have,a social story is a little book with pictures and words that you can make yrself showing reece when he is on his machines and in hospital and also when he isnt when he is just being a normal little lad,having pictures that the other children to see and explained to them why reece gets tired might just work?

also on the push chair issue why not get him a little go kart thing with a handle that attaches so he can be pushed and taken off just b4 he gets there so he arrives in style??

xx

[ripple11]

Great photos

Good to hear he's going to Nursery 5 days a week, although I would have thought the teacher would have make a special effort to look out for any teasing etc.
Like cia says, I think its a good idea to try and get the other kids on his side.