Since the last post we have received a date for Jude’s fundoplication. Initially we were given 13th April (thank God it wasn’t a Friday) anyhow there was one of the surgeons who was unable to assist on that day, so now it’s going to be Monday 19th. The intensive care bed has been booked (just in case) and it all seems to be going ahead.
As of tomorrow Jude will be on 1ml of epelim twice a day, his seizures are getting quite large now I just hope we can last another week before the introduction of topirimate.
On a lighter note we (me and Ray) did our cake sale. When we arrived at church to set up the cakes just kept on arriving. In the end we had three trellace tables, we honestly thought we’d never sell them. But we did and made a whopping £200.00 with more sponsorship pledges made. I would like to thank everyone who so kindly made cakes and to everyone who bought them. Although, I really didn’t want to see another cup cake for a long time as I had baked about 50 or so of them they day before together with about 40 bread plaits.
Jude has been awake since God knows when and he’s still fighting sleep, now in my space in my bed and I’m getting cold 😦 sleep Jude, sleeeeeep.
I was very honoured to be invited into a primary school today with Jude. The school was St Peters in Bartley Green. Rachel (of the Murray variety) teaches there and her class were doing an assembley about caring for others. Everyone made Jude and I feel so welcome and I found the assembley very touching.
We spent a couple of hours at the school and Rachel (oops Miss Murray’s) class helped set up Jude’s feed. It was so lovely to be involved in something so positive. We talked about lots of different people’s roles in Jude’s life and how each individual helps Jude in a different way. Rachel is only a few weeks away from her mamouth 26.2 mile (London Marathon) run. I am so full of admiration for her and will be cheering her on all the way, with her little Jude fan club. You can sponsor Ray to do this run (of total madness) by visiting http://www.justgiving.com/rachelmurray-marathon. It really is very easy to do plus there’s a couple of cute pictures of Jude-ini on there.
Also for all you cake lovers in the Stourbridge area, we are doing a cake sale after 10.30am mass on Sunday ……. mmmmmmmmmmm
….and Jude is feeling better too.
After a rather unpleasant few days I am pleased to inform the cyberworld that I am indeed feeling better after my post 40 ailments and as an added bonus Jude has turned the corner and is back to his happy, smiley, singing self.
Tomorrow (today now, must go to bed) we are getting our first visit from the visual impairment advisor. We are sure he sees something, just not sure what.
So as Rachel blogged, I spent a weekend in Ireland to celebrate my birthday a week early and the scale of the event took me completely by surprise. Once I got there I was expecting a lot of family to be there – my dad had lots of brothers and sisters who had kids who have had kids so the Marrey family is fairly expanded. To see my own family and close friends there was a blessing and I think a good night was had by all.
40. The way I look at it, it’s downhill all the way and it takes less energy going downhill 🙂
But, the unwanted presents is another chest infection for Jude so he’s back on antibiotics, oxygen and inhalers as well as throwing up everywhere. And he is thoroughly miserable. And I’ve been poorly too – going downhill I am.