Reece goes away for Christmas. Again.

[Claw75]

good news Mo. Hope you all have a lovely christmas x

[Karabiner]

good news Mo. Hope you all have a lovely christmas x

xx

[mondatoo]

Excellant news,hope you all have a great Christmas

xx

[technolog]

Brilliant news Mo. Hope you all have a wonderful Christmas and a very healthy New Year xxx

[The_nun]

Hope you all had a good festive period we did, will get around to posting some pictures soon only not had much time off over the last few weeks, I got unlucky with my shift pattern.

Reece had his course of Tami-flu but it turned out that it was a false alarm, not swine flu. His cultures for his line also came back clear but his swab from the entrance to his line was showing some growth signs so he is on antibiotics for that. Not a life threating internal line infection, just external. Almost over his regular flu, still coughing plus a cold which he hasnt shook off since the end of November so he has returned to school today in fine fettle apart from that.

He is full of it lately and great it is to see, lets hope he stops picking up illnesses from school, I think he gets more because of his low immune system. He is also getting more and more the comedian ( if that's at all possible) some of the things he comes out with are hilarious.

Today Stacey finally gets the keys to her house, after it not happening pre xmas. Not sure if I have already said in past posts but she has been on the list for a local authority home since moving in with us back in March / April time last year after deciding she could no longer afford to pay for private renting. Any way she was lucky enough to get accepted for a private estate new build. Apparently so many new builds have to be let out or something like that, so although the date kept being put off due to weather and other minor things today is her big day. It needs carpeting, wardrobes, cooker etc, as because it is not being sold they have not put these into the rented ones, but these will come in time. She is very excited.

We are now starting to look to book Reece's holiday as we have to give the team at least four months notice. It is not an easy task, apparently we need to talk to an airline directly to ask if they will waiver extra luggage fees, as we will be carrying a lot of medical equipment with us for the first part of the holiday, then I believe that we will get the rest delivered off an American supplier whilst over there, Some will be there waiting but we need to take some with us too. I am soooo not looking forward to asking, I hate doing things like that. Been looking at flights already, not yet seen some that suit our budget so will keep onto it. The hospital was hoping we had some sort of idea by this Thursday as it is Reece's out patient appointment with the medical team and they wanted to start plans I think.

Eating wise, he is up and down, with having this flu bug then a cold for so long it must be hard for him to have a good appetite, saying that, this week he is doing a lot better. He has four night on TPN, then 3 Nights on another machine into his mickey button on his belly that feeds him a high nutrient (like milk but not milk) feed over the night. He is tolerating the amount at the moment and not vomiting like he always used to although the pump is only set at 40 mil p h for 10 hours so it is a lot slower than before. Touch wood his tummy has remained a nice shape and there are no signs of dilation/distended gut. His weight remains around 16.9 / 17.2. He is noticing ( with the help of the other kids comments) that he is smaller than his school friends but we just keep telling him Grandad was until he was 12, this seems to work.

So there we go, lots of positives to start this year, unlike the last few years when he was always either in hossy with line infections or liver problems or knowing we were going to be putting him through more major surgery. Fingers and everything crossed he can go 2011 without the dreading theater looming. Like I have said before our lives are so much more normal for us since the op in Leeds last year, obviously no where near what most people class as normal but we will take thanks. 

Happy New Year all.

XX

[tikay]

All good then, Maureen!

Happy new year to you, Darren, Stacey, & The Legend himself.

[GreekStein]

All good then, Maureen!

Happy new year to you, Darren, Stacey, & The Legend himself.

[Laxie]

All excellent news to start off the new year! 

Delighted for ye and we need to speak soonest to arrange handing over of the few bob I have towards that vacation fund.  xx

[RED-DOG]

 

[Kev B]

All good then, Maureen!

Happy new year to you, Darren, Stacey, & The Legend himself.

[Tonji]

Have a wonderful & healthy 2011.

[Claw75]

All good then, Maureen!

Happy new year to you, Darren, Stacey, & The Legend himself.

[mondatoo]

Great update,really hope you all have a great year xx

[technolog]

Great news Maureen, long may it continue x

[The_nun]

Reece had his outpatients appointment today, (not Thursday) I didn't get to attend as Stacey only told us today that it was not Thursday like thought, so I was on lates, but hey ho..all went very well.

Team are very happy with his progress on 4 nights, so as planed he drops another night off TPN and replaces it on a night of pump feeds into his gastrostomy. Now here is the biggy, they are that confident that he is doing well that they intend dropping a night every month and aim for him to be TPN free as of April. This is great news but I intend not to get too confident as he has already failed twice as we well know. I think the struggle will come when he goes from 3 to 2, but I truly hope I am wrong. With so many disappointments in the past I have learnt from my mentor (RedDog) to take it day by day and not to expect too much, and strangely enough it is easier to accept this way of thinking than one would imagine, although when things do go wrong it hits bloody hard still.

Anyway, I think it is another great big step in the right direction, this child is not only my very special Grandson but my life hero. I feel very privileged that we were lucky enough to have him born to our family.