Tag Archives: lycra garments

Sitting Pretty

OK, so this post came with a teaser trailer. OK. A teaser spoiler. You see, I couldn’t sit on the news. I couldn’t help but tweet my joy and relief at the weekend. Like always I did it with a sense of nervousness.

Whenever Boo does something to suggest a milestone will be met or has been met, I worry that telling people will jinx it. It’s not that I’m a superstitious person. I’m not at all. It’s not that I’m a pessimist. I’m not. It’s just when you’ve played the two steps forward, one step back game for long enough you become a pragmatist. Too many things come and go with a growth spurt, or onset of illness, or the turning of calendar pages. But I think this one is sticking. And I am so, so happy.

So, here it is:

Boo sat for 5 minutes. Unaided. 5 minutes. 300 seconds. It felt like hours in my mind.

And it was the reflection of not just hours, but days, weeks, months and now years of hard work and grinning through tears of frustration. Hours of physio at home and nursery every day. Sitting him between by crossed legs, sitting him on my legs. Sitting him straddled on a physio roll and on a box. Sitting him on a Swiss ball and, when that burst, his sister’s space hopper. It’s the result of hours and hours of conductive education and the love and support of his teachers, who don’t see limits in our children, just potential. It’s also, undoubtedly the work of the Lycra suit he now has, which gives his brain enough sensory feedback to make his floppy trunk muscles realise that have a job to do and iron out the c-shape in his spine.

As I sat playing with Boo last Sunday he was on his lime green yoga mat (non-slippy and cushioning for bumps) as usual, I had an array of toys in front and to the side of him to choose to play with: his drums, his bubblegum machine, his V-tech bus. I was actually focused on his SALT therapy at the time. (Yeah, cerebral palsy has robbed me of the opportunity just to play with my son. There’s always an end in view.) So I was getting him to choose toys by eye-pointing and grabbing and making a ‘yeah’ or a ‘no’ (which he can’t yet say but is trying to). I was talking about colours and seeing if he recognised them.

I looked at my watch, to see how much time we had before his sister came back from her swimming lesson and when to put the jacket potatoes in the oven for their tea. 15:05. OK, plenty of time.

Bubble gumballs cascaded down the machine and I tipped it up so Boo could try (it’s very hard for him, but he is just about doing it now) to lift the balls up and put them back in. He was doing so well with this, we kept going. Then he wanted to play with the bus and I made him choose letters (from the ones he can say: ‘m’, ‘a’, ‘d’) and played the songs. I sang them and he joined in with odd sounds. It was fun. And then I got out the drum and realised one of the instruments off its side had fallen off. It was near me, but I had to move about half a metre away from Boo to get it. Without thinking, I did it.

He was still sitting. Diamond legged (to eliminate his hamstring tone), propping with one arm. Then he swapped to prop with the other. He was still sitting. I looked at my watch 3:10. I shrieked. He wobbled. I caught him.

He had been sitting for 5 minutes. Tears welled up. If it hadn’t taken me so much by surprise, if I wasn’t so nervous about not being near him to catch him when he falls, I’d have a picture to show you. Maybe soon.

There have been days (many days) where I worried this day would never come. People had told me not to expect that Boo would ever be able to sit independently. And no one can predict what this means in the long term.

But we’ll take this and shout out loudly and proudly about how well Boo’s done.

No limits, Boo. Sometimes, I think there is nothing you aren’t capable of.

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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 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.