Meals and visits

Pads didnt make it out to church at all again on Sunday so it was great to see Pastor David and Ruth Kay yesterday. They were up visiting  from Whiddon Valley, Barnstaple for the Christian Worship Committee (get your CW Camp form in now!) and caught Pads downstairs - a rare sight! He'd been watching 'Band of Brothers' with the tutor. They had a lovely time together.

The day didn't stop there: we also had a visit then from the gastrostomy nurse who changed Pads' mickey button as we had reason to believe it was faulty. Padi was brilliantly calm for this, considering how strange it is and how distressed he was the first time this had to be done. 

The nights have not been too bad since last Friday. We have needed to give a few doses of breakthrough pain relief today though. Asher donated his handwarmers which provide a level of relief too when applied to Pads neck. 

We've been grateful to receive several delicious evening meals from friends at church which eases the burden, particularly on Ally. I've also obtained a two week 'fit note' which means that I can work from home without feeling obliged to go in to the office and I can fit work around events at home. There's plenty going on! Ally's currently preparing the back room for Pads. It is larger and will make looking after him a lot easier, as much as he likes his corner of the study!

People often ask, 'how are the others?', and I've been reluctant to give an answer because I'm not very confident they would share fully with me as a parent. This means creating appropriate space for them to express themselves and we've been taking advantage of the professional help available. The boys are looking forward to another 'Over-the-Wall Siblings Camp' in half term and that is very much geared up to supporting children in their situation. 

Sadly, it looks like Pads is not going to be well enough to go to Ellen MacArthur this year. When we told them he won't be able to come they said they'd send him a memento to show him that they are all thinking about him. 

A change of PEG

Pads is having a visit from the PEG nurse based in the community. He's been talking of pain in that area recently. Without much activity he's been putting on weight and so we'd moved to a lower calorie (1.5-1 Cal per ml) feed. PEG's are great as we can do a lot of self-care. He cleans the site himself and applies the hydrocortisone that prevents granuloma. However it has not had a decent review for a while. He still has terrible memories of the time the Mickey button needed changing. He got in a terrible flap of distress. We've talked it through this week though and he has clearly moved on, realising that the skill of the nurse made it a really quick and painless event - out with the old and in with the new. Even though he's right, it really wasnt much to get worked up about, this is still an impressive bit of reflection and maturing. Well done Pads!
The nurse says the Mickey has got a bit old. In fact we're supposed to check the 'balloon' which inflates with water keeping it in place regularly but we've not been as dilligent as we could have been...