Like most of you, it’s been back to reality for us this week. A return to school, to work, to nursery. Oh, and because we’re the Boos, appointments, illnesses, out of hours doctors and all that jazz. Monday was supposed to be the most depressing day of the year (and to be frank, if you read my post on Monday, you’ll know that ours wasn’t great), but the week has got better and better as it’s gone on and I am quietly optimistic about what lies ahead.
So here goes. Our good news…
Boo got better! Thanks to The Grumposaur’s Dad arriving with an unexpected gift on Christmas Day (a stinking cold and chest infection), Boo spent from January 1 until Monday pretty sick. His fever came and went for the first few days, but by the early hours of Sunday was up to 40 almost constantly. His breathing was shallow and rapid. I was worried to put it midlly. We had quite a saga trying to see an our of hours doctor, but eventually got antibiotics and he’s doing so much better now.
I’ve written about this before, but when any child gets sick (especially when they can’t communicate what’s wrong with them), it’s awful. Sissyboo’s major illnesses always knocked me for six. But with Boo, or with any premmie, or any child with complex health needs, it can be devastating. You end up trying to fight not just the big that they have, but have to wrestle physiologically and emotionally with the underlying problems that make them so vulnerable to things that would make you and I feel a bit out of sorts for a few days. You confront you fears of the past the present and the future. And it’s blooming exhausting. Thank goodness we made it without hospitalization this time.
We got some sleep. OK, this is a story of two halves, or 5/7ths and 2/7ths to be precise, but still, glass 2/7ths full and all that. Boo’s sleep problems have been awful for months (most of the time since birth, actually). Worse still, they have deteriorated rapidly since November. Settling him is a battle that can take hours only for him to wake 50 minutes later. He has started to bite, pinch and pull our and his hair before sleep too, behaviours we never see at other times. If he naps on us in the day, or on his tummy and a sleep mat at nursery, he sleeps well. I’ve been trying to work out what the problem is. I’ve (almost) set aside the partly irrational fear that his epilepsy is returning and come to the conclusion that there are some sensory issues at play here (about needing sensory feedback to comfort himself) but also that he needs pressure and a good deal of support to fall asleep. Sadly, I can’t let him sleep on his tummy at night. They can do this at nursery because he is constantly watched, of course. He can head turn, and can roll front to back but not reliably enough for me to think that if he got into trouble, he could get out of it.
The effects on us all have been, frankly devastating. The exhaustion is awful. The frayed tempers worse. And this week, it was clear that it was starting to affect Sissyboo, too. And there I draw the line. I wrote to her teacher to explain that she might be tired at school but vowed that I was trying to get help. I am trying. Hard.
So I want to say a big thanks to all those tweeps and especially the many lovely people who commented on or messaged me through the blog’s Facebook page with advice, anecdotes, tips and solidarity. Thanks also to a lovely friend I happened to meet for an all-too-brief coffee for the common sense she imparted. We have introduced some new things. I have set up an elaborate home-made sleep system involved supports under his sheet to bolster that given by his v-pillow. I have bought a white-noise machine, which we clearly need to leave on all night. I have contacted Cerebra, who run a sleep service that has clearly helped so many and I am about to receive some info from them that will allow them to assign us a sleep practitioner. And, of course, I will speak to Boo’s consultant about this when I see her in 10 days.
But touch wood (and with crossed fingers in case I jinx this) the last two nights have been better. Much better. And the effects all round (on Boo on us) are terrific. This is going to be a long battle for us, I suspect, and like many of the ones we fight, the goalposts will probably change a lot, but I feel positive that we are doing things about it and that doing things is making a difference.
Exercise. I have entered a half marathon in September. This will be my second in only my second year of running. Well, I say second year… I haven’t run regularly for many months and regular running really stopped last March after I got an injury. I had intended to start building back up to regular running this week, but things have been too hectic with Boo’s illness and a scrambling to catch up at work with time lost to his illness that it hasn’t happened. But I have done some school/nursery drop-offs on foot (a round trip of 1.5 miles) and even doing something so small-scale has helped me to clear my head and make me feel a bit better about life. I have written run in my diary for today and Sunday. It might just happen, fingers crossed…
Conductive Education. Sadly, I had to work this week on the day I normally take Boo to conductive ed, but The Grumposaur took him. I want to write more on the blog next week about what Boo’s being doing in conductive ed lately and how it’s helping him, but for now, I thought you might like to see some of the fruits of his labour in the form of this little snowman masterpiece.
One of the things I love about conductive education is that it doesn’t base activities around what it thinks children with cerebral palsy can do (knowing that many mainstream activities can extremely challenging for many of them). Instead, it asks how we can enable children to access all the activities that we would expect kids their age to do.
And that’s what I want for Boo. A life where we provide him with strategies (however unconventional) so that nothing he wants to engage in is in off-limits. Surely that’s the kind of life we all should lead…
Anyway, that’s my edited highlights of the week. I’d love to hear your good news in the comments section or on the Facebook page. I love to hear from you!