I really miss him too. Laxi marrieJack and lives happily ever after in the USA.

Thursday.

Usual Roller Coaster.  It is a week tonight since he last had TPN. He has maintained his weight much to our surprise and is trying extremely hard to get as many calories in ty o himself as possible.  He needs around 4 to 6 k a day in hope he will absorb at least some % of them.

Another meeting today to say they are thinking of leaving the line in for another week or 2. Then If he is still doing well take it out,  if not replace it at the same time.  Not happy with leaving it in for that amount of time as it is not flushable, it is not safe In my experience anyway.

We had a discussion and we have all now agreed rightly or wrongly it need to come out if possible this Thursday.  There is an excellent vein specialist now at Leeds that will be doing it if they can get him a slot Thursday, if not next week. Then Darren,  Reece and myself will venture off on our holiday which he is so excited about being able to swim as much as he wants without limitation.  If he starts to deteriorate then back to theatre for a new line.

We are being realistic that it is enviable that he will return to the awful and very painful vital injections and this he is kind of accepting. He has very little with on his bones so they are very painful for him.

Talk about not knowing if we are coming or going.  It's gone from clot and get it out ASAP plus high risk of infection to leave it and see etc.  

Let's get this done...bring on the next challenge we are pumped up and ready for battle.
 

Tx Bobby.  Hope you are all well. Xx

Here we go again down that road.....I can't flush his line it's blocked basically. He needs surgery to remove it. This will happen Monday after some messing around. Lots I want to say but can't.  He is having a forced trial (forced because it isn't sure he can manage without it but it is knackered ) I am now his carer going for full parental control,  which needs to be to prevent certain situations like I can't sign for required surgery at the moment it needs to happen.  Stacey lives too far away for her to sign at the drop of a hat. Not ideal ....very frustrating. ..very emotional.   Very much in need of a boost.

Down in her Raven

Thanks Tom.

He is improving immensely.  The hospital are so pleased with him.
He had to have a 5 hour iron infusion Saturday  and will not notice the benefits from that until a couple of weeks.

Last night he went to a birthday party at Lazer Zone with the boys from school.  He had a ball and was so excited. He came 2nd too.

Darren and him are even closer now if that was at all possible.

Yesterday was Darren birthday and today our 26th wedding anniversary. Yesterday we were in bed and he woke us up carrying 2 cups of tea and his infusion back pack on. I know it sounds silly but I never let him near hot things but this shows I need to acknowledge that he is quite able it's just me that struggles. Lol.

5 merits in English today. ....just saying. 

There's only one place for women and we all know that's in the kithen. 

Where is your thumb...that's what I want to know.

First day at new school. Where he is doing really well. Moving up sets now in set 1 some and 2 in others.

Hi Co's,
Hope your well and living life to the full.

Thanks for asking too.

Massive changes have been happening here. Long story short as don't want to go into too much detail but Stacey moved away a few months ago well against my wishes but she is 30 and who am I to stop her.  Reece had never liked the area where she moved to anyway so he moved back here and now lives with us.
Obviously this is great but also means major adjustments for us as I work lots of hours and overtime.  Plus Darren works. Anyway we are coping and Darren is training up to take Reece off TPN in the mornings to help me continue full shifts. 

Reece has had to start yet another new school which he has coped withave admirably.  He is dropping another night off TPN as of this week as he is gaining weight. So 3 nights now.

He is also really happy and has settled easily into our very quite life style.

Xx Mo.

Living the dream, Tighty.

Keep them coming!

Really enjoyed those posts and photos, Tom, thank you. Sounds like you guys had a ball.

Sofa king....fantastic f e l l a. Well missed.