Tag Archives: Christmas

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…

Sissyboo 

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.

Christmas

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.

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The Therapist’s Approach to Christmas

OK, so call me Mrs Scrooge, but here’s my confession: I’m not really looking forward to Christmas this year.

Before you pelt me with metaphorical baubles, let me explain. I’m not such a Grinch that I can’t get excited about it a little bit. Alright, a Tesco ad is never going to make me cry and Yuletide shop windows in October leave me cold. But I do love it for the kids’ sake. Sissyboo’s excitement is a wee bit infectious and some of it has rubbed off on me. And now that her birthday has been and gone I feel like I can and have to get organised.

But I also don’t want to. You see a big part of me, the part of me that crosses my fingers before certain medical appointments or opening certain letters addressed ‘To the Parents of Mr Boo’, the irrational me, doesn’t want the advent calendar door on the 24th to open.

I’ve had some less that perfect Christmases in the past 30 odd years but last year’s was a humdinger. Last year was also the first that I’ve ever let myself get really excited about.  It had been a tough old year, to put it mildly, but after 8 1/2 months we were all together and doing well. Boo was progressing, albeit slowly, and he was home and with us. Sissyboo had settled in at school and was doing so well with all the challenges our new life had brought her. We were spending Christmas with my folks. It would be no work. No hassle. All hands on deck and more food and drink than was decent.

And then Boo started to have seizures.

I won’t recount the details of us discovering that he had infantile spasms – a catastrophic form of epilepsy caused by the brain damage that is the root of his at the time not diagnosed cerebral palsy. The whole sorry saga is well documented here.

He had several episodes as we called them at the time on Christmas Day (not obviously seizures, but I suspected that they were nonetheless) and all I remember about Christmas Day was a crippling anxiety, a dry mouth, worry that I would ruin everyone’s Christmas if I took him to A and E and terrified to death for the consequences if I didn’t. I took him in on Boxing Day and what followed involved three hospitals, three hospital stays and some of the worst months of our lives.

Boo has been seizure free for 10 months now. He was diagnosed quickly and responded well to treatment. We were and are lucky. Very, very lucky. But the spasms could come back or morph into another form of epilepsy at any point. Fear that this will happen – that he will start seizing again and lose the skills we have worked so hard to develop – resurface often in my mind, but I try to focus on the good, how long it’s been since his last seizure, how well he’s doing. Usually I don’t let it get me down.

But in the long hangover from last Christmas I am struggling to think about this one. I know it’s daft. There is no more reason to think that Boo will start seizing again on December 25th this year than tomorrow or never. It’s just a date.

Anniversaries are hard in Premmieland, though, as I’ve documented on the blog before. Even though they give plenty of opportunity for celebration – of how far we’ve come – they simultaneously clobber you round the back of the head and don’t just remind you but make you feel, smell, hear and taste things you don’t want to recollect.

I know it’s silly but I’m frightened. Frightened of allowing myself to get too excited for this Christmas (the happy, family one we should have had last time round) and setting us up for a fall. I’m frightened that something else will come to knock the wind out of our sails. I’m frightened I won’t be able to cope if it does. I’m frightened of memories making me sad on a day when I should be happy for my kids’ sake. And I owe it to them to be strong. They deserve a fabulous Christmas. Sissyboo most of all. I am determined she will have one.

So this year I am not dreaming of a white Christmas or perfect parties or anything resembling a Tesco ad. No: I’m approaching Christmas as I have learned to approach life since Boo.

Call it the therapist’s approach to Christmas, if you like. My plan is to keep plugging away at the day-to-day by doing what needs to be done to give us the best chance of things working out but safe in the knowledge that things will either go to plan or not. I only have a limited control over these things no matter how hard I try. I know that now. And yet whatever happens, experience tells me that it will probably be OK. And if the determined, crazy little Boos stay true to form, it could just be marvellous after all.