Tag Archives: physiotherapy

Targets and other Torments

I’ve written on the blog many times before about the sense of weight and guilt that comes with Boo’s enormous long list of therapy goals. We have targets for physio, SALT, and OT not to mention our own private goals for Boo.

The lists are huge. Not metaphorically. I mean very literally. They are huge! They live on our fridge. Don’t use these as a diet aid, by the way. Seeing them on the fridge door makes me want to eat my body weight in cheese and double cream whenever I look at them.

I’m a list kind of person. I am what the self-help industry would call goal-oriented in my personal life. I have a long-term plan. I break it down into steps. I do my best to stick to the plan. And will usually flog myself until I have achieved what I set out to do.

But I can only help and encourage Boo. I can’t make his body do things it struggles with. And I have no interest in making his life any more difficult than it already is.

One of the biggest mental adjustments I have had to make since having Boo is letting go of goal-oriented me. For ages I tormented myself with the ‘will he walk’ question. No one knew, of course, whether this would happen or not, but most thought it unlikely based on the extent and nature of his brain damage. But then someone gave me a glimmer of hope. ‘If a child sits unaided by two there is a very good chance they will walk (maybe with a walking frame) by the time they are five.’

I wish they had never told me. Hope can very quickly turn into a stick to beat yourself with in this here life of ours.

I crippled my back trying to get Boo to sit before his second birthday. I was fixated on this happening before he hit 24 months uncorrected. When that was clearly not going to happen, I counted every darn day of his eleven weeks of prematurity and went for 24 months corrected. That date passed too.

Boo is now over 3. He still can’t sit unaided for more than a few seconds and cannot be left alone in this position. But we have just tried a new walker which we are hoping to buy and he steps in it in a way that makes the Grand Old Duke of York look like a complete amateur. Like all the amazing kids I have met since Boo’s birth, he just does things in his own way, on his own schedule. This is goal orientation Boo style and it is beautiful to watch.

There was a time when I felt the fading prospect of independent sitting with great sadness. Now I’ve adjusted. My sense of time is much more elastic now. I worry less about where Boo is relative to others. Frankly, that way madness lies and we celebrate each and every inchstone Boo meets whenever is the right time for him.

But of course, sometimes, I have a wobble and forget all I’ve learned. Children’s parties are a particular trigger (if he gets invited to them at all). Lugging Boo round a soft play for an hour the other week so he could join in while all the other kids ran hysterically like puffed out beetroots who had had a week’s sugar intake in a minute while their parents drank coffee and talked about the inequities of catchment areas was a weak point for me, and meant I couldn’t walk with a straight back for 48 hours. Sissyboo’s sports day last week was another.

And then there’s the biggy on the horizon. The milestone we can’t dodge or avoid. It will just have to be met by hook or by crook and whether he or we are ready or not.

School.

Next September Boo will start school. That may be 15 months from now. That may seem like an age. In special needs elastic time, though, it really isn’t. It really, really isn’t when you consider all the things that we would like to have set Boo up to be able to do before he starts school. There’s joystick control so he can (please, please let this happen) learn one day to move himself around. There’s potty training, so important for his dignity and for others’ perceptions of him (which will in turn, of course, affect him). There’s his ability to use an AAC device because he will never be able to write. And then there’s the four pages of A4 targets on the fridge.

It feels totally overwhelming. Impossible. Even with 15 months.

But it also feels imperative. We have to set him up as best we can. We just have to try our best to achieve these things with him. But we also have to let him be a toddler who can’t toddle, a little boy whose life can’t just be about goals, but has to be about living. About play. About fun.

I don’t know how to square this circle. I know that school doesn’t mean the therapy train stops (more’s the pity). I know that Boo will continue to learn (that’s the point of school, right?). I know (I hope) we have time to help him. But I also feel totally suffocated by the prospect of the next 15 months.

Have we made the right choice of school? Will we get that choice without a battle? Will our LA get their act together enough even to transition him to an EHCP before he gets there? Will we have done all we can to ensure he has the smoothest transition to school possible? Will it be enough?

I just don’t know. And that’s hard to deal with. Really hard.

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8 Presents for Young Children with Cerebral Palsy

Last month it was Boo’s second birthday. It was also Easter, of course. We’re also in the middle of our anniversary season – the 11 long weeks that span Boo’s actual birthday (a day of mixed emotions for us), the anniversary of the day he came home, followed by the anniversary of the day he was supposed to be delivered by c-section to avoid the complications we had with his sister, and finally the anniversary of the day he should have been born. Anniversaries are tough in premmie land, but there is also a lot to celebrate. And one of the nicest things is seeing Boo receiving and playing with lots of new gifts that help us ring the changes in the daily grind of repetitive therapies.

But it’s also hard. Don’t get me wrong or think I’m ungrateful. I’m not. But I have to admit that all the texts and calls I got from people asking me what they should buy Boo for his birthday or as a small Easter gift (he’s not wild about chocolate) weighed me down.

My to-do list was especially long then. It was another thing I didn’t have time to sort out for other people. Some people even asked me to buty presents for Boo on their behalf … But what really bothered me was that all of this was just another small but significant demonstration of how people don’t know what to do or think about Boo.

He is a little boy. Oh, but he has cerebral palsy. Goodness. What on earth can you buy a child like him?

Of course, some people (many people) asked me these questions because they know the high costs of looking after a child with additional needs. They know that budgets are tight and we prioritise carefully. They wanted to help us buy things that he really needed or that would help him. And of course it’s just common sense, isn’t it, to make sure what you are buying a child with additional needs is suitable for them, in Boo’s case that they can actually access it?

But it still made me a little sad. So do the people who say (and really, they have said this to me): ‘I’ve sent money because I wouldn’t know what to buy him’. Now obviously, money can be a fabulous gift to a child and family with additional needs, especially if they’re saving for an expensive toy or piece of equipment. But to send money because ‘we don’t know what to buy your child’ (this has been said to me too) as if my little boy is an alien who has just crash landed into our garden after journeying through several galaxies is hurtful.

So I thought I’d share some thoughts on buying gifts for children like Boo and give some some examples of the things that have gone down a storm here. I’ve seen lists like this myself on Amazon and such like. And they can be really helpful. I hope this might be, too.

But first let me say this: a child with cerebral palsy or any additional physical or cognitive disability is first and foremost a child. Boo loves to play. If you asked him what toys he wanted for his birthday his answer would be his favourite new word: ‘more’. Now that’s partly because he’s speech delayed and he only has a a handful of words. But it’s also because he’s a kid. He wants things, lots of of things, lots of brightly coloured, noisy and (for Mummy’s sake) robust things that make the never-ending cycle of therapy feel fresh and new. Frankly as his number one therapist, so do I!

All this means that some of the best presents Boo has ever received are those where people have just taken a punt and treated him like a kid rather than a kid with CP. A friend of mine sent him a Melissa and Doug wooden train for Christmas. And he just loves it. OK, so he can’t attach the carriages to the engine. OK, so he mainly ends up throwing it around the room when trying to get the cow out of the trailer, but he loves it. He doesn’t know he doesn’t play with it conventionally. He just plays. And every toy, pretty much, has therapy potential. Taking things out of the carriages and putting them in is fine motor therapy. Sounds (choo-choo and moo) and words (train etc) tick the SALT box. We can learn through just about any kind of play.

If you have a friend whose child has additional needs, why not take a punt? Or if you’d rather buy something the child might really need or want, why not say to the parents, ‘I just wondered if there’s anything particular X wants for their birthday, but I’m happy to pick something myself and have lots of ideas’. My best friend always says this. She says it because she knows sometimes it takes me a week to reply to a text message. She says it because sometimes it’s all a bit much and I can’t add another thing on the to-do list. And she says it because she is always lovely.

But there are toys out there that are particularly great for kids with additional needs and here are the eight gift ideas or types of gift ideas that I would recommend for a non-toddling toddler with cerebral palsy or simply issues with high or low muscle tone and gross and fine motor delay . It’s not an exhaustive list by a long way. No: these are just a few things that have made the most impact in our life. In all of these, play and fun are the goal, but all have therapeutic benefits.

1. Musical instruments

 

We’re a very loud household and sometimes tuneful with it. Musical instruments are Boo’s favourite toys and are the easiest way to get him to do any physio (reaching, grabbing, rolling and most recently stepping, which Boo does to get to his crocodile xylophone which we put on the sofa for him to play with while in a supported standing position).

I wrote a guest post about learning through music for the lovely Edspire a while ago, so you can read more about some of the other ways we use Boo’s instruments therapeutically there. But let me tell you, if Boo gets a present that rattles, dings or chings before he opens it, you know you are on to a winner. And the possibilities are endless and can be very inexpensive. From a couple of handbells (less than £5) to a drum or xylophone, I don’t think any of the things in the pic above cost above £15. They are much loved by us all. But not necessarily by our neighbours.

2. Books

Books are hugely important to our whole family and Boo loves a good story. Especially great are sound books where you have pictures in the text telling you to press a button at a particular moment. (Flap books are also good, but Boo struggles to manipulate them with his compromised fine motor skills.)

Sound books not only animate the story but they aid cognition as they encourage children to anticipate the sound. Some are also just hilarious. If you haven’t read the sound book version of Aliens Love Underpants, let me tell you, you haven’t lived. We also love What the Ladybird Heard (I do a mean Lanky Len impression, I tell you) and Room on a Broom.

3. Lights and lava

If you are lucky enough to have a sensory room somewhere near you, I won’t have to tell you how great lights and lava toys can be for kids like Boo.

Three of the best unsolicited presents Boo has ever got fall into this category. First there was the lava lamp (from one of my godmothers) and then a bubble tube with plastic fishes (from my other godmother). The lava lamp completely captivates Boo and calms him. We use it at night sometimes when he won’t settle to get him to stop crying while his legs are spasming. The bubble lamp has the opposite effect. It gees him up (although I know other kids find them calming) but he is also kind of hypnotized by it and will sit longer, straighter and better while watching it than while doing anything else.

The last of these three wonderful gifts was a light projector pillow pet. I’m sure that Boo has no idea who the Teenage Mutant Ninja Turtles are, but he loves watching the colours change and fade in and out on his when we settle him at night. Best. Presents. Ever.

4. Puzzles

Boo loves puzzles, sometimes called form boards, where you pull out (usually wooden) pieces from a template. He struggles a bit with them because of the difficulty he has using his arms and reliably opening and closing his hands, so big handled ones are best for him. You can buy  puzzle and formboards with large handles from various SEN companies but they can be terrifically expensive. There are plenty of high street brands who do these without the special needs label (like Big Jigs) and they cost much less. And don’t be afraid of puzzles being a little too hard. The only toy I can rely on Boo playing with independently without fuss for half an hour is a board with different door locks on by Melissa and Doug. He can’t work all of the latches, but loves playing with them, especially when I open all the doors for him and he has to close them.

5. Cuddlies

Not much to say here, except what I said earlier. Boo is a little boy who just happens to have CP. And like most kids his age he likes teddies and dolls. He cuddles them and plays with their hair (he has a hair thing and it means he stops playing with mine for a bit). We also use them in role play. Feed the teddy, make dolly some dinner, that kind of thing.

6. Balls

You can roll, kick or throw them. They come in all sizes, colours and textures, from smooth to rough and bumpy. You can get latticed ones (great for little fingers that can’t reliably open to hold on to). Some light up. Some, Boo’s favourites (do you see the pattern here?) are noisy.

And some are so big you can sit and roll on them. Like this one, which currently resides under my work desk where my feet should go…

What’s not to love?

7. Bubbles

This has to be the cheapest gift ever. Tubs of bubbles cost pennies but can produce the biggest smiles. Boo can’t blow, although we are trying to teach him. But he should put bubble popping in his CV. We have tried all sorts of bubbles. He loves the enormous ones you can get with those outsized wands and we recently discovered set hard bubbles which land on Boo’s Bee seat tray and he spends ages trying to pop them. But if you can spend a little more (say £10-£15) I can’t recommend a bubble machine enough. Boo stares at his, squeals and yells ‘more’ at least once a day until I dutifully turn it on for him. We have one that we can plug in or put batteries in for the garden. I think I will have to pack it when we go on holiday.

8. Talking Toys

We use talking apps on the phone in Boo’s speech therapy. You know the sort of thing. You talk to a strange creature who repeats things back to you in a high-pitched voice. Boo likes them but is always trying to grab the phone off me and look in my camera roll to see pictures of him and his sister (which like bubble popping should be listed as one of his hobbies on his CV). But then Gina came into our life.

Sissyboo bought her for Boo’s second birthday. She was determined to buy him a giraffe on account of them being his favourite animal. (Her evidence is his love of the Giraffes Can’t Dance book.) While looking online for a cuddly giraffe (because Mummy left it to the last minute), we found Gina, a cuddly toy who started life as an app.

You press her foot/hand and she listens. And then she repeats what you say. The minute Boo sees her, he frantically repeats ‘hiya’ until Gina responds. She sits in on most of our SALT at home these days repeating what we have to say.

And speech therapy has never been so much fun. I’m pretty sure Boo thinks he is teaching Gina phonics rather than me teaching him but who cares.

This isn’t a SEN toy. As such it doesn’t cost the earth. In fact, it was pretty cheap. But it is one of the most therapeutically beneficial toys we have for Boo. Cause and effect cognition? Check. Speech development? Check.

But you know what? Most of all, it is a toy, a cute, funny and entertaining toy that allows Boo to be a kid and play. What better gift could you give any child?

I’d love to hear your ideas for top presents for children with additional needs. Please do leave a comment with your suggestions.

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Spidey Boo: Loving the Lycra

Spidey Boo, Spidey Boo

Does anything that a spider can do…

OK, it doesn’t have same ring to it, does it? But let me tell you: we are loving Boo’s new spidey I mean lycra suit. The Grumposaur is a very keen (insanely keen) cyclist, so lycra and I have a long and difficult relationship. I have to confess, though, that I hadn’t heard of lycra for therapeutic use until Boo’s birth.

It was first mentioned to me not by one of Boo’s therapists, but by a parent of one of Sissyboo’s friends in the playground. She’s an adult OT, who until recently worked for a very overstretched OT service in North London. When I talked to her about Boo’s tone issues (the floppiness in his trunk versus the intermittent stiffness in his arms and legs) she said, ‘Push for dynamic orthotics, you know, lycra garments.’ I didn’t know, but like the research-obsessed parent of a child with additional needs that I am, I found out as much as I could quickly.

At the time, many months before his diagnosis, Boo was far too young for lycra to be of much use. But as time went on, I kept thinking about dynamic orthotics more and more. If only Boo’s trunk wasn’t so low tone, he could surely do so much more. It was on my Boo list (yes: it’s an actual list and it is huge) of things to follow up on. By coincidence, however, at his next physio appointment, his lovely therapist said ‘I think it’s time we thought lycra’.

Of course, nothing therapeutic comes cheap and costs have to be carefully justified and rationalised. So to test Boo’s suitability for lycra, we conducted a very high tech experiment. The physio went in search of some tubular elastic bandages to put round his middle. It turned out that no one in our huge hospital had any at all (and someone who worked there who recently went to A and E with a sprained ankle was apparently told by the person treating them that the hospital ‘couldn’t afford them any more’). So we had to wait until the next appointment.

This appointment was just a couple of weeks later, and the physio came armed with regular bandages that didn’t break the NHS bank account. She and Boo’s OT then tried their best to make Boo look like a Scooby Doo baddy by wrapping bandages tightly round his trunk while his expression gradually changed from disgruntled incredulity to disgust. He was not at all sure the Egyptian mummy look was in this season, but we could all see straight away what a difference this made. His c-shaped spine was more like a capital ‘I’. It was amazing.

Roll on a few months, during which the physio wrote a justification of resources and got a consultant to sign off on the cost, a measuring-up appointment with orthotics and then a fitting and hey presto. The Spidey suit came home.

As you’ll see from the pics, it’s like a mini wetsuit, tailored specifically to meet Boo’s needs. It gives him sensory feedback around his trunk to get his brain to send some of the necessary messages to his trunk muscles so they do at least some of the work they should. It helps him open his hands a little better, too.

It has its down sides. It’s breathable, but not the coolest thing in the world and necessarily very tight. Thankfully it’s good-looking enough that Boo could wear it on its own with a pair of shorts on hot days and he would still look his gorgeous, funky little self. But of course, we only have one suit and it needs to be washed (by hand, of course, no machines) and hand/air dried at the end of every second to third day of wear to be ready for the next morning. (Drying it out is not easy at this time of year, let me tell you.) It also brings with it some physical complications. Boo is a little stiffer at the hips now and his rolling progress went backwards in the days after first trying the suit as he struggled even more than normal to raise and bend his legs. We’re working on that and heading back to where we started now (a pattern we’re very used to in this crazy old life of ours).

For all these minor inconveniences, though, the benefits are enormous and we need to get as much evidence of these as possible in the next few months so that, hopefully, the NHS will continue to fund suits for him as he grows (which he is doing at an alarming rate). I hope to get a pic in the next few days to show you how much straighter his spine is in this. How much longer he can sit in a diamond sitting position. How much better and taller he stands (with our support, of course). For now, you’ll just have to trust me. But even just looking at this pic, will show you something small but significant in our world.

You might not see anything remarkable, but for me, this is a sight for very red and sore eyes!

Look how straight Boo is lying! Without the suit, if you lay Boo on the floor he’d be doing his best impression of the letter S, all squirmed and curved in the wrong places. He’s straight as an arrow here. That’s the lycra.

 Come on, Boo. What are you gonna do now?

Is he strong,?

Listen bud,

Can he swing from a thread?

Take a look overhead.

Hey there,

There goes Spider Boo.

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Good News Catch-up: Good News Friday #47-49

Today is Boo’s first TAC meeting. TAC stands for Team Around the Child meeting. We have 10 of the cast of thousands involved in Boo’s care meeting at his nursery to talk about him face-to-face. It’s been a long time coming. 12 months, nearly. And the organisation has been shambolic, to put it mildly. But it is finally happening.

I am grateful. Very grateful. Grateful that busy healthcare professionals are taking the time to meet with us in this way. Grateful that Boo will, for once, be at the top of people’s agenda rather than mid-way down yet another waiting list. I am grateful that The Grumposaur will finally get to meet Boo’s developmental consultant, speech and language therapist and ask them questions I have asked many times before.

And I feel sick. I feel really, really sick. Because the agenda is a tough one. Education and statementing, or whatever the new acronym is and the process that no one seems fully to understand, are high on the list of talking priorities. It has the potential to be overwhelming as we discuss a little boy people are starting to describe as a ‘square peg in a round hole’. A little boy who is severely disabled physically, but seems (for the moment at least) to be cognitively age appropriate. You can’t pigeon hole, Boo, I was told last week. ‘He doesn’t fit the common profiles for disabled children.’ This is going to make a difficult process more difficult, I’ve been told. ‘I don’t think the county is provisioned for kids like him’, I was informed. This stuff is not fun. But it has to be said. We need to start thinking long-term soon. Oh crap…

I have had a big wobble about all of this over the past few days, hence the Twitter and blog silence. I emailed my friend over at Tough Little Cookies about it all. She said a lot of lovely, smart and sensible things, because she is lovely, smart and sensible. One thing really stuck in my head, however. ‘Remember, you know him best of all’. She’s right. Whatever is said about Boo this afternoon will not change how I feel about and dream for him at all.

So, instead of adding to my long list of questions for the TAC meeting, I decided I would finally get round to writing a Good News Friday post, by way of a bit of a catch-up for all of you about all things Boo, and a reminder to me of all I have to be grateful for on a day I really need reminding.

Motoring On: I confess, physio can feel like Groundhog Day. Sometimes I think if I spend another 30 minutes trying to teach Boo to roll I will explode. How much harder must it be for him than me, though? And he never gives up. What right have I to want to do so? The problem is not just the repetitiveness of the exercises (although I try to find new and fun ways of doing the same thing for the 500th time). It’s the fact that doing it every day means that you often can’t see the incremental progress and feel you are banging you head against a brick wall. We’re all about the increments here, I reminded myself yesterday. So I took a step back. I looked at the 100s of photos I have of Boo on my phone and took stock of his achievements. This is what I realised

Boo can sit with diamond-shaped legs (straight legs cause increased tone and his back to curve) for up to 2 minutes unsupported. Did I really just type that? 2 minutes? How did I not notice what an amazing achievement this is? He has to prop with one arm or he topples as his trunk is so wobbly. But he can do this and his saving reflexes, while not totally reliable, are improving all the time.

Last week I took the first ever picture of Boo while I was sitting from in front of him. Usually I have to sit behind him (his bum steadied by my crossed legs) and flip my iphone camera round. This is a huge milestone for us both and the photo is now officially one of my favourite pictures of Boo (and there is a lot of competition let me tell you).

And also yesterday, whether by luck or judgement, Boo rolled once from back to front. He has never done this before, peopleNot without help. Not in 2 years. I had left him on his change mat on the floor in the dining room, to get the change bag from the living room, 5 feet away. Sissyboo was in the same room with him, but sat on her chair finishing a drink. I heard a noise. I could see Sissyboo through the doorway and heard her scream, I thought at first with fear. But it was actually a squeal of delight followed by a bit of fear when Boo donked his head on the wooden floor.

He had rolled off his change mat. He was on his tummy. Neither of us could believe it. He had done it. Neither of us had seen it, but he had done it. We then spent 30 minutes trying to get him to do it again. Of course, he didn’t, but he found our efforts to make him do something he didn’t see any need to completely hilarious. We were late to visit a friend as a result.

The roll may have been a one-off. But it might not. Independent mobility might be coming. It is one of the things I wish for most for him. Please let this be the beginning. Please.

Speech: Progress in this department is still very slow, but I feel that his cognitive skills are pretty good, backed by an encouraging Portage assessment last week that identified him as having entirely age appropriate skills except where his physical problems impeded his progress. It’s becoming clearer to me, his Portage teacher and speech therapist that Boo’s problems seem to be oral motor (muscular) rather than necessarily cognitive, although we can’t be totally sure. We are getting very clear ‘yeahs’ from him now, ‘hiyas’, lots more ‘dads’ and the odd ‘mum’, not to mention various other sounds and odd words. My homework for this month is to work on ‘m’, ‘b’, ‘d’ sounds, blowing (he has no clue how to do this as yet), 10 basic verbs on flash cards (and I have finally bought a laminator to make them) and colours. That’ll keep me, I mean us, busy.

Clapping: Clapping was put on Boo’s target list by his old Portage teacher when he was a year old. I wasn’t happy about it being on there. It’s not that I don’t want him to clap, but his arm function is severely challenged. Moving his arms in the necessary way was and is tough for him. Doing it without closing his hands into fists almost impossible. Of course, he kept failing this target. Our new Portage teacher took it off his list. I like his new Portage teacher. And then last week, I said ‘Mummy clap’ after Boo done something well in physio. He copied me. His arms moved well, if not quite symmetrically, so one hand was raised slightly above the other. One hand was open, the other was fisted. But he did it. He only bloody did it. And now whenever you say clap, he has a go.

Conductive Education: Boo loves his conductive education classes. He is worked so hard there, but he has so much fun. He loves his teachers and his little friends. We are so lucky to have found this wonderful place. And he is making such strides there. I know that the School has helped him to achieve all of the things I’ve described above. His propping on his tummy has come on in leaps and bounds. He can hold his head up with nearly straight arms now much of the time. I never thought this would or could happen. He is trying, not very successfully, but nonetheless, to crawl. He can do four-point kneeling easily with splints on now, and without them. This is harder, but he tries, nonetheless, with some success. His supported walking is amazing. He is stepping, folks. Stepping! And he is ahead of the game. His teachers think it’s hilarious, but Boo is always starting the next thing before the class moves on. So when we arrive and everyone is sitting in their chairs, he picks up his name card to give to his teacher, because he knows that’s the next bit. Then he raises his arm in preparation for the vocal exercises. He rolls before the bell is rung for them to do it. He knows the routine. He’s ready for what comes next. He wants to show them he can do it. He mostly can.

So whatever happens in today’s TAC meeting, this is what Boo is like: tenacious, happy and living life with no sense of his own limitations. Nothing can change that. And if I need to re-read this post this afternoon to remind me of this. I will.

Good News Friday #30

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Good news! It’s Friday and I am writing Good News Friday after weeks of life, skewed perspective and other things getting in the way. But like I said earlier in the week on the blog, GNF – seeking out my good news out of life’s chaos and, just as importantly, hearing yours – matters hugely to me and it is here to stay. I hope…

 
So what’s going down in Boo Town this week?
 
Well first of all it’s half-term. Now this has caused a few headaches, I must admit. Because both The Grumposaur and I work, sorting out a holiday rota has been a bit challenging, but between odd bits of holiday taken, The Grumposaur’s parents and a Halloween workshop, we’ve got there even now that poor Boo is ill with a fever. And we’ve had fun! We dressed up and made masks out of paper plates. We carved pumpkins and made soup. We made cakes.
 
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And I stole a few hours on Monday to spend with Sissyboo on her own while Boo was at nursery having the one-to-one attention and therapy he needs. Moments like these, where Sissyboo is the number one priority are rare, precious and I love them, even though I miss Boo. And when I took Boo to his audiology and physio appointments the next day she went to a safari park with her Dad. It’s been wonderful to be able to give her the time she deserves.
 
Speaking of appointments, Boo’s back-to-back appointments on Tuesday went pretty well. I was desperately hoping audiology would sign him off. But then I’ve been hoping that for a year. You see, for all my worries about Boo (worried, me? Never), I just don’t worry about his hearing. He can hear. If you stand down one end of a long room and utter his name he turns and smiles. Not very scientific, I grant you, but persuasive enough to me.
 
But ever since he failed his newborn hearing test in his right ear in the NICU (5 weeks before his due date) we get called in 
to have things checked over every few months. I’m glad they are so diligent and wish all the people Boo saw could be so assiduous. But we know his hearing in his left ear is normal, that overall he can hear down to the lowest frequencies. We also know that he still has fluid in his right ear, though, and his eardrum is always a little pink and despit the fact that his cochlear function (when tested without the middle ear) is excellent, his hearing may not be perfect in that ear even though overall it is good enough to have no impact on his development. And this appointment confirmed this all over again. The question is whether he will need a grommet in his right ear at some point, but I hope not. I want him to be able to continue swimming as it is so therapeutically beneficial to him in terms of managing his tone and acquiring gross motor skills. But as far as I’m concerned, no more news on the ear front is good news even if it’s not great news.
 
Then we went straight to physio. Now, as you’ll know if you read this blog regularly, I love our physiotherapist. She is brilliant at her job and at various points in the shambles of Boo’s care she has gone our her way to do everyone else’s and go into bat for him. But our last physio appointment was not fun. Instead of smiles and clapping there were exchanged glances and frowns. Boo seemed to be going backwards, particularly with his sitting. I knew that, of course, but I was hoping she’s spend that appointment telling me I was wrong.
 
She didn’t. There was talk of lycra garments, of him never sitting independently, something we’d never discussed before. But she did come up with a list of other exercises and some aids for me to source and buy if I could find/afford them. It took ages to track things down in this country in the right sizes without breaking the bank,  but with some help from ToughLittleCookies, who really knows all things SEN equipment related, I ordered them. They didn’t come in time for the last appointment, but we persevered with the exercises and nursery put in a concerted effort too.
 
The result: Back. On. Track.  I suspect Boo was recovering from the effects of a growth spurt and that had thrown him off, but the exercises won’t have hurt and who cares why he dipped. He’s back on track. He spent the entire session making like the performing seal he is usually keen not to emulate and showing his best efforts at sitting (OK when self propped, struggles when he uses his arms), rolling (he can go front to back and side to front, it’s that pesky back to side we’re still working on) and weight bearing in standing and kneeling. You could feel the relief in the air. Smiles all round!
 
We’re still contemplating lycra garments because of Boo’s low trunk tone but we want to see how his body responds to that kind of sensory feedback before applying for funding to see if we could get them. So the plan was to put a tubigrip bandage sock round his middle and see what happened. Well, our hospital is rationing tubigrip, apparently, and the only stuff the physio could find was so small that we had to abandon attempts to get him into it when things turned into the corset lacing scene from Gone With The Wind. So I may be sourcing tubigrip now too! But fiddle-dee-dee and heigh-ho! A good appointment.
 
And lastly in good news, things are finally coming together around Boo’s equipment needs. I’ve said already, I think, that the PCT accepted the OT’s request to fund Boo a Jenx Bee seat at home. That’s been on order for 3 weeks, so hopefully it’ll be here in another 4-5. We just heard this week that the LEA is funding one for nursery, too! Such a relief. I may have danced around the kitchen. a bit. Postural support is so vital for Boo’s ongoing development, it reduces the risk of lifelong complications of his CP, like scoliosis (curvature of the spine) and will greatly aid him to do what he wants to do most: interact with his peers. We might have both by Christmas. Who says Santa doesn’t exist? 
 
And because SEN equipment is like that train of proverbial buses, Boo’s Otter bath seat arrived this week too and a very nice man fitted a couple of hand rails to our stairs for us. These aids are for us (or rather for our creaking backs) rather than for Boo. And we are grateful. The bath seat is a particular bonus. It’s not a total hit with Boo. It’s so big that he can’t bath with his sister any more (which he’s not happy about) and so high off the bath floor, even on the lowest setting that our water bills (and the last one nearly made me spit out my precious espresso over the dining room table) will go through the roof if we put in enough water to cover him (which is a shame as he loves the water), but we need it more than him. And as I am increasingly aware, we need to look after ourselves to care for him properly.
 
So 9 months after it was first mooted we needed all this stuff, it’s starting to fall into place. It’s been a long wait and quite a battle (understatement of the year) but the benefits are clear and we’re glad to be able to enjoy them. 
 
Happy half term! Now, over to you. If you have a nugget of good news, please feel free to share it below.
 
 

 

Welcome to Premmieland: Where Little Things are a Big Deal

Let me let you in on a secret. I’m someone who makes mountains out of molehills. Small beans are almost always a big deal to me. It’s just how I am, but it’s something I’ve often been criticised for, mostly by kind folks who are trying to get me to stop worrying about the small stuff and see the bigger picture so I can go a bit easier on myself. It’s something I tried to cure myself of while pregnant  with Mr Boo. I wanted to be better able to put things into perspective before he arrived and inevitably made life more chaotic, as any new child does. (Little did I know…) But now I think I’m a completely hopeless case. I’ve just come to the conclusion that I see the world in a particular kind of way and my radar is too sensitive a lot of the time.

I’ve mentioned before how having a premature baby does very odd things to your sense of time. I was reminded today that it alters your sense of perspective in other ways too. You see, in Premmieland tiny things are a big deal. Quite literally. Our little ones make a big impact on our lives. In the early days (and for some, for many months afterwards) grams or ounces take on a huge significance and minuscule reductions in the amount of oxygen helping our babies to breathe takes a hefty weight from our shoulders.

It works the other way too, of course. Little things can shatter our biggest hopes and dreams. An almost imperceptible flickering of Mr Boo’s foot, for instance, signalled the onset of ankle clonus that first made me believe that he probably would have cerebral palsy given what else we knew about his medical history. And then the little hiccups that started at Christmas landed us with a diagnosis of a ‘catastrophic’ epilepsy, infantile spasms.

Now life is thankfully (mostly, fingers crossed) on a more even keel. But the little things still matter hugely and usually in a good way.

Like today. Mr Boo had his routine fortnightly physio. I wasn’t holding my breath about it, to be frank. He hadn’t slept well last night and was really grouchy when we got to the hospital. I thought, great: this is going to be yet another appointment where I say, ‘He does this better at home, honest, he’s just out of sorts’. But I didn’t have to. It was quite a shock.

The physio got out a new toy, you know one of those ones where you push, twist or punch buttons to get animals to pop up and then you push the animals back down again and the fun starts from scratch. Let me tell you, this is a really challenging object for Mr Boo. The dynamic tone in his arms (intermittent stiffness made worse by exertion) coupled with his difficulties in opening his hands makes working a toy like this about as tricky as it would be for me to juggle four balls. While jumping on a pogo stick. On a tightrope. Without a safety net. While desperate for the loo.

So when Mr Boo pushed a button, grabbed the animal that popped up and then pushed it back down again, all while in a sitting position (when he has much less trunk and arm control) our jaws dropped. The physio looked at me quizzically. We didn’t speak but I knew what she was thinking: ‘Didn’t expect that, but let’s not get too excited just yet. It might be a fluke’. I was thinking the same. But it wasn’t a fluke. He did it again and again. OK his arm movements were far from gainly and his hands were a little more fisted than we’d like, but this bit of play, an activity his older sister could do without effort so many months earlier than him, is HUGE.

I felt like I did when Sissyboo took her first steps at roughly the age Mr Boo is now. That day may or may not come for him. But I know there will be other days like this. And I’ll take them gladly.

That was no molehill we hopped over this morning. We scaled a mountain. And I’m dizzy from high altitude and pride. So much pride. Go Boo!