Tag Archives: Jenx Bee

Good News Friday #34, #35 and #36

Never mind Bad Santa, I have be a bad blogger recently. Good News Friday has been neglected again. So here’s another 3-in-1. How Christmasy!

It’s not that there hasn’t been good news, but we’ve had to wade through a bit of treacle to get to it and by the end of the week, my energy levels have been zapped and I’ve let things go. But we’re still standing and things are on the up, so here’s the edited highlights of our past three weeks:

Breathing sound

The main culprit for no GNFs for the past few weeks was Boo getting ill. We don’t know if it was RSV again (not much point in testing really) or whether a virus agitated the bronchial hypersensitivity that is the legacy of the RSV and bronchiolitis he caught last year while in hospital for his infantile spasms. Whatever it was, it made him rasp like something out of Dr Who and frightened the heck out of me. We were on permanent, blue-lip, A and E run alert but, mercifully, that didn’t happen. A course of steroids, an emergency inhaler and one he will now have to take daily for the foreseeable future did the trick and he is breathing beautifully again. He is sleeping better (2 nights slept through in the past week, so finger crossed) so I feel a bit more human. Thank goodness we got off so lightly!

Sitting pretty

A few weeks ago, I posted a pic and few words about Boo’s Jenx Bee seat. It is a revelation, I tell you. We now have somewhere where he can sit posturally supported and safely. He had totally outgrown his Cushi Tush by the time we got it and we were getting very worried about scoliosis. Hopefully, this will stop it. I can put him in it and know he’s not going to throw himself back and bang his head or tip to the side (though he is squidgier – that’s a medical term, OK? – on his right side than his left and leans just a little bit sometimes even in this seat).

That said – even if we ignored the OT’s repeated warnings that we are never to leave him alone in it for a second, so don’t think of suing them if we do and he has an accident – we can’t leave him to play independently in it. You see, Boo likes to play his own games but with adults at his beck and call. The yellow and black edging on the play tray isn’t enough to stop toys rolling off and despite the wonders of Dycem, it doesn’t help all that much to keep things in place as Boo tries to eat it. So he’ll play for a bit and then he’ll chuck his toys on the floor, flash you an innocent ‘Moi? Sorry‘ face and wait for you to pick them all up and then the game starts again.

The new news on the seat front is that a second has now arrived and been set up at nursery and we can’t wait to see how it revolutionises things for him there. One of the brilliant things about the seat is that it is fully height adjustable, so it can be as high as our dining room table or as low as the nursery tables in the toddler room, so he can sit at eye-level with his little friends. I can’t wait to see him in it with them at his Christmas party tea with them next week.

And then there’s the sitting that doesn’t happen in the seat. This is something I am nervous about blogging about. I have a real fear of jinxing things, which is odd, as I was never superstitious before having Boo. I suppose it’s a survival mechanism. I don’t want to get too excited about anything because (and I say this without a shred of self-pity) every time I have in the past 20 months, it has come back to bite me.

But, with my cautious hat on. I think Boo’s sitting balance is getting better. He is propping well and saving himself when he topples more reliably. OK, he can’t sit straight-legged. We have to eliminate his high hamstring tone by having him cross-legged or box sitting, but if we do, he can sit with minimal support for a long time and play. With no support, he can manage a few seconds, sometimes longer.

It is a start. Things might deteriorate with the next growth spurt. I won’t allow myself to get too excited. But I can’t help but be a bit excited. That in this area things are moving in the right direction. That he might, one day, sit independently. Please, let this happen…


I can’t leave off without writing about the fabulous, nearly-exploding-with-pre-Christmas excitement Sissyboo and her wonderful sense of fun. I blogged about the amazing way that she has got through these past few difficult months this week and if you haven’t read it yet, you can do so here. Today I am off to see her school nativity (she’s a centurian) and then to her end-of-term ballet and modern dance shows. I couldn’t be prouder. Boo is one lucky boy to have her in his corner.


And some of her enthusiasm is rubbing off on me. I wrote a few weeks ago about how I wasn’t looking forward to Christmas at all, and I am still very up-and-down about it (some weird PTSD-like fear of a repeat of last Christmas and the diagnoses and hospitalisations that ensued) but I am facing-up to Christmas. I’ve got almost all of my presents, written most of our cards and put the decs up. I made paperchains for an hour with Sissyboo yesterday and felt pretty festive when I took her ice-skating last weekend.

I’m starting to allow myself to think that maybe, just maybe it will be OK this time. I hope so.

OK, so over to you. Please, please, please, share your good news below or on Twitter or the blog’s Facebook page. I love to hear from you.

Good News Friday #33: Bee Happy

Well, how did that happen? It’s Friday again. It’s been a frantic week and it ain’t over yet.

But I was determined to get a Good News Friday post out and on a Friday. Because this week we have had some especially great news.

I could write a long post about it, but if you follow this blog and our tedious and upsetting battles in getting equipment for Boo, you’ll know what this means.

10 months of waiting, complaining, tears, negotiations and upset. It has been horrible. But now we are the proud users of a Jenx seating system for Boo which should see him through to age 4-5.


He is comfortable and posturally sound for the first time in his 19 months of life. And he and we couldn’t Bee happier!


I so hope you have some good news to share with us, too. We love to hear from you!