Tub with Llŷr

The house has continued to 'tick over' with visitors: amongst others, it was good to see Pads' school mates and lovely to receive Grace from Scotland for a couple of nights. Happily for her, the church held a Gospel Preaching Rally last night with Pastor John Saunders of Chichester. He spoke with great clarity and earnestness from Matthew 9:33, 'the dumb spake'. When we are saved we will speak to God, of God and for God.
Mr Saunders introduced us to the Puritan Christopher Love, referring to the book by Don Kistler. The letters exchanged between Love and his wife while anticipating his execution are striking:

Though thy head was severed from the body, yet in a moment thy soul should be united to thy Head, the Lord Jesus, in heaven. (p84)

Even though our body may be rent, nothing can separate us from the love of God in Christ Jesus! (Rom 8:1)
In spite of needing two doses of breakthrough pain relief last evening and one just before leaving his room, Pads made it to the tub again this afternoon. This time cousin Llŷr was able to make the trip too. Padi's pretty wobbly, understandably so! We've tried to overcome his limitations and make it happen with as little discomfort and indignity as possible if it's what he wants, but the amount of strain is starting to outweigh the pleasure.

Bo had a big day with his (and our) final assembly of Ysgol Mynydd Bychan. He had to change clothes twice to play Aneurin Bevan, Ray Gravell and a character from a Sherlock Holmes story. Now he's learning lines for auditions - he wants a decent part in the end of year play.

More trips in the car

Making good use of the Motability car while we've got it, yesterday Pads ventured out to enjoy Star Trek 'Into Darkness', and today he went in the hot tub. The sub-cut (subcuticular or 'below the skin') needle which delivers analgesia needed taking out and a new one inserted in a different site. The previous site had started to go bad and he's still got pain and a big colourful bruise on his right hip from it. After an hour and a half with no pain relief going in it was great that Jane was able to drive to us at Ruth's and make the change. It was lovely in Ruth's garden and Padi's wit was spritely, even if his speech was slurred having become worn out by the excursion. We're getting used carrying him up the stairs. He's generally pretty awake between the hours of 12 and 8pm, but it depends what he's been up to.

(Another) new plateau

We had a torrid time a couple of weeks ago trying to keep Pads pain under control and eventually moved to the syringe driver as opposed to fentanyl patches. This move was foreseen and something of a Rubicon in everyone's minds, not least Padi's. He worried that the device would hamper his movements. In fact he has continued to be able to enjoy the things he did before and he has mentioned wanting to do more. Quite how that could turn out is hard to picture, but he did get to church on Sunday night and was in the tub on Monday.

People who are very ill often 'come and go', to the astonishment of those caring for them or looking on. He had a lovely letter from the the Head of Year 10 and SENCO yesterday. He'd already mentioned school earlier this week; last night he descended the stairs with the express intention of using the Wii-Fit game (involves standing on a 'balance board'). This turned into a less improbable Wii Sports Resort session with Asher. Ross and Amy arrived from Scotland having been briefed by Rhys on the way from the airport not to expect too much and imagine their surprise when their first sight of Pads was of him doing something completely normal!
It is certainly typical of Pads who, over the last five years, has seemed to be spiralling downwards only to level off and continue on that plane for a while. Who are we to stymie his ambitions?

Tub then pump

Yesterday, when we realised we were aiming to get Pads a hot tub today it also occurred to us that he might be hampered by installing the syringe driver. That relies on a constantly attached subcutaneous needle and we're unlikely to want to get the injection site wet. So we had a chat with the team and decided to put the patch up to 200ug and give sevradol at bedtime. Retiring in some trepidation, thankfully we were only disturbed once in the night, and that wasnt for pain. So the plan is to pop to the tub and then get connected up to the driver.
Because Pads is often sleepy in the mornings, we try and have family worship in his room at night. Last night he asserted that he wants to take part in the morning event too. We were happy to cram into his room at 7:20am and read Revelation 4 with him. There is the majestic vision of glory and the Eternal Omnipotent God. This book was written to encourage the church. No matter what we face, God is in control and is working all things out according to the counsel of His supreme wisdom.

Thou art worthy, O Lord, to receive glory and honour and power: for thou hast created all things, and for thy pleasure they are and were created. (Rev 4:11)

I don't know

Pads has been spending a lot of time in bed recently. Towards the end of last week it was even getting him down, he was even getting fed up of his entertainments (i-pad, mp3 player, DS). By Saturday he couldn't give any other answer than, 'I dont know'. With that, mum got him dressed and suddenly he was in the car. I'd just about finished cutting my hair and needed Ally to give it the once-over but Pads was in situ but thankfully I'd done a reasonable job. Before long Pads was in the 38 degree hot tub at Ruth's. He stayed there until it was 36.5, somewhat marooned for the last ten minutes, and that 1.5 degress makes quite a difference - not least with a keen wind blowing down the garden. I'd been impressed with his ability to 'hurdle' into the tub, getting out wasn't a lot different except that he asked me to carry him down the garden, over the slippy slabs and steps to the house. At 42kg, he didn't present too much of a problem.
On Sunday, Pads was in a high mood, almost irrepressible. At times like this it is wise to keep the tummy tucked in, because nothing pleases him more than catching me off-guard with a flashing finger to the midriff.
The days of this week have passed on without incident really. On Tuesday night he was surprisingly easy to coax downstairs for a 2 hour game of Bohnanza with his siblings, although Moli had to get on with homework after 7:45pm. On Wednesday, Reuben was in town for Toddlers at Tabernacle. He made short work of pursuading Pads to get up to play with our ancient set of brio trains. Pads would really like to meet Reuben's new sibling, due to arrive in a few weeks time.
These kinds of 'good times' make life worth living.