What is normal? A question that’s been going around my head recently. Half a dozen drugs day and night, fed through a tube, repated chest infections, more therapists than a therapy convention, open access to the childrens’ ward, ‘specialist’ equipment and so on. All normal. For Jude.
The question (and answer) is not meant to elicit pity, sorrow or anything else of note. It is just an understanding that normal takes many different forms and in time even the unreal becomes real. And normal.
And why am I thinking about ‘normal’ – we’ve been on holiday. 3 days in Wales with my brother and sister-in-law. We went to the beach, we went to a farm/zoo/adventure play thing. We played the WII, we ate we drank. And we did all this ‘being normal’ with Jude. Not around Jude, not because of Jude but with Jude. It wasn’t challenging, difficult, problematic (although pulling a pram across a beach is hard) or in any way anything but normal.
After a rough 5 months or so it was nice just to commit to being a whole family for a few days. Next week it’s right back onto the treadmill with surgery for the GI tube and then we’ll have the 24 hour EEG and at some point soon the EEG for his eyes. Now Jude’s better in himself we can start to increase the physical therapy training programme we have from Brainwave (which he doesn’t tolerate well when he’s ill). Jude’s also got his visits to Acorns for hydrotherapy to look forward to.
So back into the normal routine for a while, but it was nice to be different normal for a while. And we can start planning for our next holiday. 🙂
Well we had a call from Birmingham Children’s Hospital on Tuesday to tell us Jude’s operation is scheduled for 4th June. That’s rather soon, but I suppose it has to happen sometime.
Jude (and us) were referred to the Acorns Children’s Hospice recently and today we all went around as a family. It has a superb hydrotherapy pool, a great sensory room and a whole host of other bits and pieces and we were made to feel really welcome. Hopefully Rachel and Jude will be able to enjoy regular weekly sessions in the hydrotherapy pool and every couple of months we will all be able to go as a family….there’s lots there for Nathan and Joe to get involved in and play with. And Cadbury’s is just down the road.
Jude still hasn’t quite cleared up his cold/chest infection but we seem to be nearing the end. This has been one of the worst though, for us and him. He’s been almost exclusively tube fed now for a few weeks and he’s brought a lot more up than he has done for many months…..probably since the last time he was exclusively tube fed, I think it’s probably linked and we’ve taken to giving him less but more often.
Last week’s trip to Brainwave went well, we have some new excercises to do with Jude that are about getting him to interact with his environment. They think their has been a little improvement in some developmental areas and I suppose when you look back you can see it….day to day can be very hard though.
Yesterday we went to the Childrens Hospital, a full 12 months after his last appointment. Jude’s care is (theoretically) shared care between our local hospital and the specialist Childrens Hospital which is half an hour or so away. They asked why they hadn’t seen Jude for a year – “because you keep cancelling the appointments” and “you only gave us 5 days noticefor the last appointment and it came while we were on holiday.” I think they wished they hadn’t asked.
They have decided to do a 24 hour EEG for Jude, the first one he’ll have had – maybe that will give them some insight into how best to manage his siezures. We should get that appointment in 6 weeks….or maybe 12 months!