Birth Story Part 2: Labour

mrboosmum:

Now that the blog is a year old, I’ve decided to introduce a Throwback Thursday where I’ll reblog a post from the year before, when two people and a hamster read my musings, rather than the three, a hamster and a cat I rely on as readers now. And these posts tell me something important, too. Gosh, we’ve come a long way! Welcome to the story of Boo’s birth. Mrboosmum

Originally posted on Premmeditations :

I’m not wild about suprises. Don’t get me wrong. If someone wanted to whisk me off to Paris tomorrow or if more than 4 hours sleep in a row were to come my way (pretty please, it’s been a year…) I’d be thrilled. But if I’m honest, I’d be much happier still if I had advance notice to work out my travel itinerary or know I could have a large glass of wine without regretting it. My dislike of surprises is one of many reasons why I find all of this so hard. I couldn’t plan for Mr Boo’s birth. I wasn’t ready. But what really kills me inside now is that I can’t plan for Mr Boo’s future. Will he walk one day? Will he have learning difficulties? Will the spasms come back? When Will we he be diagnosed with cerebral palsy? All I know is that I don’t…

View original 1,716 more words

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.

a4641-smallsteps

The Love Bug

Image

10 is the magic number in Boo Land. We waiting 10 long months for specialist seating (his fabulous Bee chair) to give him the support he needs and to help prevent the onset of further physical problems. And then last week our 10 month long wait from joining the wheelchair services waiting list to getting an adapted buggy came to an end. I cried with joy, let me tell you.

Until I’d had Boo, I had no idea how much difference an adapted buggy might make to children with additional needs. A buggy is a buggy is a buggy, right?

Wrong.

In his old buggies (the big Maclaren travel system and then smaller Triumph) that once belonged to his sister, Boo travelled well for about 6 months (until he was 3 months corrected age). But then his posture started to look odd. As the weeks and months went by, he looked more and more like a sack of potatoes being grudgingly carted around.

He wasn’t comfy. Worse: he wasn’t supported. We thought of the buggy as a necessary evil: a way to get him from A and to B. Increasingly, though, it just started to look plain evil: something that was ironically preventing him from accessing the world around him (a buggy’s principal function) and contorting him in the process.

The Grumposaur said I was worrying unnecessarily. It was OK. The referral would come through soon. Four months later it did. We were initially told Boo, rather offhandedly before we went into the workshop that he was on the young side for an adapted buggy. And then they looked at him more closely, exchanged glances and said he urgently needed something better and that we should take him out in the Triumph as little as possible. We were advised the best buggy for Boo was the Ormesa Bug, which is made in Italy. They might have one in stock (although to quote ‘it’s hard to understand our stock list so I don’t know if we have one or not’ – they didn’t). But he would get one ordered very soon. But there was one more but. They had spent their money for the calendar year already. No orders could be made until January. This was October.

I looked into buying one ourselves. You won’t be surprised to know they are extremely expensive and before you know it, he’ll need the next size up. (The rainhood and canopy alone that we have had to buy as they are not funded costs hundreds on its own.) On top of the buggy cost we needed specialist inserts we were told would be nigh on impossible to get privately and we’d have to pick up all repair and servicing costs, too. We decided to wait for the money to become available. And for months, I barely went out at weekends. Family outings rarely happened. How much fun can you have if you think you are damaging one of your children?

Six months, two more appointments and a new budgetary year later and last week, we got the Bug.

It’s a big old beastie and the seat is heavy to lift and fold. But we all know big is beautiful and this buggy is just fabulous. The support it gives Boo’s trunk via thoracic supports, a pelvic strap, 4-point harness and a footplate is miraculous. He can sit totally upright.

I have been looking forward to this day for a long time. Knowing he is well supported when we go out and about is priceless and such a relief after months of worry. What I hadn’t anticipated was quite how happy it would make Boo. He’s always liked being outdoors, but now and for the first time since he was born he is actually properly integrated into the world outside our house. He tried to touch everything as I push him around our local park in the week. The wind, kids playing, leaves on the trees. I think he really saw the ducks in the pond for the first time. Every one of the many shrieks and giggles he made made me want to cry.

People told me an adapted buggy would change our lives. I wanted to believe them. And in less than a week, I can say it already has.

magicmoments150x150_zps58f60c40

A Big Day for a Little Blog

Todaythe day after Boo turned two, Premmeditations turns one. I have been blogging for exactly one year.

Nothing about that sentence would have made sense to me 18 months ago. For one thing, back then I hadn’t got a clue how you’d even start a blog, and only a very limited sense of what blogs were, having only read a few of the many millions out there for the previous six months. So if you’d have told me that I would start a blog, after too many tears and one too many glasses of wine while my partner was away with work, the day after Boo’s first (and very difficult) birthday, I’d have laughed in your face.

Then there’s the fact that I have managed to keep it going. When I started Premmeditations I was desperately sad, lonely and confused. I wanted to talk and write. But my life was, still is, the definition of chaos. I never really believed I could keep it up.

And partly that was because I never really thought anybody would read it. Or if they did, I didn’t think they would ever come back to read the workings of my loony mind.

This isn’t a big blog. I am not a very good blogger. Premmeditations comes to you courtesy of the seat of my pants. And I will likely never make the Tots100, although I am proud to be persistently knocking on the door of the top 500. But people do read this. And many people read loyally.They leave comments. They tweet me and leave notes on my Facebook page. They email. They care.

I started blogging to find a space for the thoughts and feelings that were trapped in my mind and heart. I wanted to know I wasn’t going mad. I hoped there might be others out there who had been through similar things. Who might understand. And I hoped I might be able to reassure others going through tough times of their own. What I found was a huge community of frankly amazing people who offer emotional support, practical advice, an ear and virtual shoulder to cry on.

I have talked to some of these people on the phone (you know who you are). I have even met a couple in person (so do you). These occasions were pretty awesome moments, I must say. But most of these people I haven’t ever met and probably never will. They only know me as Mrboosmum and through this blog. As a result they know me better than most people I work with or live near. They know me better than many members of my family.

Because this blog is a big part of who I am. I never lie on Premmeditations and rarely self-censor except when I worry it might have a negative impact on someone else were they ever to find out about the blog’s existence. Finding a place where I can be me and where (for the most part) people don’t judge me but just offer kind words and calm advice has been a revelation in my life. Truly.

The day-to-day is sometimes tough and often exhausting. But I can honestly say that my life is a whole lot better since I started this blog.

Thank you for reading this. It means a great deal to me.

 

 

Happy Birthday, Boo!

It’s been a long day. Heck, it’s been a long two years. And right now, I am exhausted after helping you unwrap all those pressies (you lucky boy) and doing a compressed half day at work, and organising a modest but lovely family tea party for you, me and your sister.

And because you are you and I am and me, I am tired for other reasons, too. Your birthday couldn’t just be cupcakes and confetti, could it? Instead, it involved a phonecall to social services and a visit to the opthamologist. It also involved getting you used to the Lycra garments you got yesterday (more on that soon). And then I finished your Blue Badge application and sobbed for 10 minutes.

You are two, little man.

They say the twos are terrible. And I admit that there is something terrible about you turning two. You see, for premmies, two is the magic number. The year you are supposed to outgrow your prematurity. Some do, of course. Many, even healthy ex-premmies, don’t. And why should they or you? You’re not supposed to be two. Not for months…

But you are two now, whether I believe it or not. And as a family we haven’t outgrown anything, except the life we had before having you.

And frankly, it will be terrible in June to have go to your two-year (corrected) review with your prematurity consultant, who has the bedside manner of Dr Crippen, and go through a list of all the things you cannot do. I dread that day. Even though it’s months away, like your birthday should be. I fully expect that review to be a terrible day, sweetened only by the fact that it means we will never have to see that consultant again.

But it isn’t terrible that you’re two. No: it’s a bloody miracle. As are you, Boo. You amaze me and inspire me every single day.

You have the kindest, gentlest yet most determined character. There’s nothing terrible about you. You are a marvel.

And while I have had wobbles today – moments when I recalled the intense pain of the contractions I couldn’t believe I was having two years ago, moments when I could smell the NICU, taste hospital food, hear the carcophony of the effing monitors, and feel all over again the pain of them taking you away from me and putting you in a plastic box that would keep you alive – I have mostly been incredibly happy. Happy not just that my baby lived – I never take that for granted – but that my baby turned out to be you. A little marvel. A big personality in a tiny body that doesn’t always do what you want it to.

Happy birthday, Boo. I love you.