A new chair

I’m getting a new manual wheelchair provided by the NHS.

I had an assessment with a rehab engineer and an OT today.  There was some discussion and after a few minutes I said “So I am getting a new chair then?”

And the engineer who is someone I’ve seen in clinic before said “Emma, the only reason we’re letting you go home in that chair is because we don’t have anything here to lend you and we can’t send you home without a chair. If we had something else you’d be in it.”

They also got a new type of cushion out for me to try and the OT declared she didn’t want me taking my old cushion home so sent me with the trial one. That’s a Qbitus Q-Care Integra 2. I’m to ring her tomorrow and say if I want to keep using that or to have a new one the same as I had which was a Jay 2 Deep Contour. Currently undecided on that.

So I’m getting an Invacare Action 4 – this is next one up from the Action 3 I’ve had since 2009 but looks all but identical. The change is due to my weight. I will have new lateral supports and solid back, identical to what I have on this (Jay J3 backrest). Something was mentioned about a higher back but I lost track of what was decided. Slightly deeper seat and elevating leg rests in the hope that will help with both spasms and lymphoedema.  It’s coming in my preferred black.

I knew my chair was desperately showing it’s age but it was working. I had been relatively sure my cushion had had it.  But I really hadn’t expected them to be completely horrified by the state of things.  It’s been made very very clear by both of them that I need to be keeping in much better touch with the hospital based wheelchair team and that this replacement should have been done about a year ago. Although I did tell them that last summer I saw one of the mobile team for a repair and commented about a new one but he basically said budgets meant they didn’t get replaced until they couldn’t be repaired.  

I’m very excited for my new chair – they are marking the order as urgent but no one is sure if that will make a difference. Still hopefully by August I will have it.

Auntie Emma

Last week I became an Aunt for the first time! Several of my cousins have children as do one or two friends and lot of those kids know me as Auntie Emma (something which surprised me).  But last week I became a proper Auntie.  My brother and sister in law welcomed their first child which was really exciting.

Henry David Nicholas was born Tuesday 13th October 2015 weighing 8lb 1oz.

The level of excitement in the Crees family really had to be seen to be believed. I think in the past week most of us have fallen in love with the baby but calmed down somewhat. I haven’t seen my Mum with him since the weekend but I’m not sure the same could be said for the new Granny!

We didn’t know he was a boy but I’d been saying since the day I found out Geri was pregnant that I thought it would be a boy.  Until the day he was born when I was waiting for news and the word niece kept coming to mind and making me wonder if I was wrong.

Here are some photos (clicking on any photo brings it up bigger)

HENRY 008(photo shows me holding Henry when I met him in the hospital the day after he was born. It’s taken over my shoulder and my face isn’t visible. My shoulder and arm are, I’m wearing a bright pink fleece.  Henry is asleep with his eyes closed and has lots of dark hair)

20151014_154239Ben and Geri holding Henry in the hospital. Geri is in bed and they are looking at Henry, not at the camera.

20151014_155437

Me holding Henry in the hospital. He’s tucked against my shoulder and I’m smiling. The blanket I made for him is over him and I have one of my hands on top of it helping to support him/hold it in place.

cropped blanketThis is the blanket I made for Henry.  Photo was taken in my messy lounge and the light isn’t great for the colours (cream, beige like and a midbrown) but it shows the detail. It’s being held up in front of someone but their head is cropped out.  The blanket is crocheted and is made up of 25 granny squares joined together with a thick cream boarder round the whole blanket.  For some reason I always thought granny squares were too complicated for me but when I set to learning to make them for this blanket I quickly got the hang of them and after several trial runs to get colour combos and hook sizes right I now love making them.

I have loads more photos – I swear between all the people he’s met thousands must have been taken – but a lot of them are still on my phone so I’ll leave this here.  But I reserve the right to do the excited Aunt thing and post more soon (I went to something new yesterday and was asked in advance to prepare a presentation introducing me. My slides were all photos and I put one of Henry with the blanket I made him in – snuck it in on the excuse I could talk about my crafts. But really I put another photo in for crafts and used that photo of Henry to boast about being a new aunt)>

Making a Difference

I was rereading some old blog entries earlier. I was planning to write something (not this post) and I thought maybe I’d written about it last year. I didn’t find anything but what I did come across was this post. I thought it was kind of apt given a piece of news I received today.

After three and a half months I finally received my new wheelchair cushion. It’s strange. It’s good and it’s comfy. But it almost feels off. This is set up differently to my old one and I’m not sure if that’s why (I have the stuff to change the set up to my old one if necessary), if its because it needs to learn how I sit or if it’s just because I spent the last two months with makeshift temporary cushions.

In the box with the cushion was a 20 page instruction booklet in 8 different languages. And an envelope with my name on it marked “private and confidential”

It was a letter. One with information about my cushion.

And then acknowledging the complaint I made to PALS about my five hour round trip to wheelchair services when they didn’t have my cushion in yet. They’re sorry but hope I did find some use in the appt (uh… Not so much).

Finally it said they’ve had a meeting with their administration team and put a system in place. One that will make sure what happened to me won’t happen again. I’m pleased. In fact I’m really pleased. If the system works and I truly have made a difference for other patients that’s huge.

But as I wrote in the entry I linked above for once I’d like not to be the one who is first and discovers a problem or the one who has it last and finds the solution. I’d like to be the one who came next.

Still, there’s always next time. Or the time after that. Failing that there’s also the time after that. Because god only knows the disability related fuck ups aren’t going to stop happening.

Maybe just once I’ll be the lucky one.

Someday.

You know you’re a book blogger when…

…you’re people watching outside a hospital whilst on patient transport and most of your thoughts revolve around the people you can see’s reading material.

Yup, I had a hospital appt yesterday.

and the patient transport took a guy from near where I live to one of the other hospitals in Oxford before taking me to the hospital ten minutes drive away and my appointment at wheelchair services (which, frankly, lets not talk about).

So I’m sat in the transport outside the hospital for I’d guess ten minutes. I sort of like to look around and see what’s what. Sometimes ideas come from that for writing.

I’m noticing they whoever designed this place obviously had a thing for bright colours. Not sure I like their choices.
The lady over is walking with the world’s largest quad stick
Oh this is where the new children’s hospital is.
Some unusual fashion choices
And such like

But most of all I’m looking at the guy slouched again a sign right across the road. He’s it an e-reader. I can’t quite figure out what sort it is though. I don’t think it’s a kindle. The thought I had was it was a kobo but then I looked again at the squared off shape and thought: old school Sony reader. You know, the ones that pre Kindle coming to the UK were all you could get.

Ok. Next most important people watching thought. He’s got his e-reader, I wonder what he’s reading. Does he look like a thriller type guy? Maybe. Not sure. He’s been there ages now, its obviously good, he hasn’t looked up.

Oh looking through the full length windows over there I can see an older woman with a book. Can’t see the title but I can see the colours of it and how thick it is. Maybe she’ll turn it…no, wrong way. Hmm those colours are a bit of an unusual combo. But, come to think of it I think the latest Sophie Kinsella paperback has that. Certainly I seem to remember the ARC I’ve got of the hardback is like that. Yeah, she’s got that reading while waiting for an appt look going on, keeps glancing up, but I could imagine her as a Sophie Kinsella fan.

Seriously no matter what else caught my eye I kept going back to those two people reading. T amused me when I realised that.

A year later

OK so it’s not quite a year later but it’s as close to a year later as I’ll get.

Last July I had my first lot of botox and that was then followed up with serial casting in August. The TL;DR version for anyone who doesn’t want to follow that link to all my entries on it is as follows. Serial casting was not a particularly fun experience but I saw a lot of improvement. Unfortunately not as much improvement as to get my feet into a “normal” position but the amount (approx 20 degrees improvement in range and position improvement) is agreed by everyone to be huge.

Yesterday I had my four monthly appt in spasticity clinic.  It was a good appointment but has had me, my sister, both of my parents and one of my besties going “oh, I didn’t expect that”

It was the quickest I’ve ever been in and out of that hospital.  Of course a big part of that is the fact I didn’t go on hospital transport but my dad took me.  Spasiticity clinic is a physio, a nurse and a neurologist.  And my neurologist always runs really late.  It doesn’t both me because although I know people who can’t stand the guy I’ve always felt like I get all the time I need, I’m not rushed and I can’t ask a stupid question.  Plus he’s very open to hearing how it is for me. Anyway I had I think the second or third appt of the clinic but I was the first patient to turn up (I was ten mins early). I wheeled in and she said she’d call the drs down. I ended up going in a few minutes early and we were at the car at 10.05 having made a loo stop on the way out (my appt was 9.40)

My physio from last year is on maternity leave I think and I don’t think I’d met the one that was there before. She had a good look at my legs/feet in my chair and then the Prof came in and asked if they could examine me on the bed. He had I think two observers with him, not sure who they were.

The really good news is that I have maintained all of the improvements I got from the casting.  That’s huge. Really huge. I think it’s unexpected too, usually a there would be some deteriorate if not complete deterioration expected (I think). Keep up with the standing frame and increase the time if possible. Work on a goal of an hour. My feet haven’t started turning in again like I thought they might have so no new contracture.

But it is now official that I have both spasticity and contractures. That’s just basically confirmation of something we’ve all suspected for a long time.  I am being referred for surgical assessment to see if it’s time for a tendon release proceedure on each of my ankles.

Growing up I didn’t see a neurologist, I was assessed once or twice a year by an orthopaedic surgeon.  I saw a really lovely man who always greeted me with “hello sunshine” and made me feel special. Most of my friends with CP saw a different consultant but I was born with a hip problem (dislocation) and was seeing my consultant about that before my CP diagnosis so I stuck with him.

The surgeon I’m being referred to? Is the one that my friends always went to.  I’ve heard very good things about him. So that’s good.  But I am a little sad that my guy has retired and I can’t go see him

The aim of a release would be to help maintain my independence and improve my standing.  The issue is that I’ve had it done twice as a child (that was amusing, I left my dad in the waiting room but when the prof started asking about previous surgeries I suggested getting him in as he’d know better then me. So he did but then basically didn’t ask Dad any questions) and no one there seemed sure if a third go is possible. I need a definite answer abou that before any decision because with CP contractures will always develop. And I’m not sure I want to use my last shot at release surgery a 30 when I’m managing well and at 35 or 40 or later I might need it more. But then if I do decline to have it now am I running the risk that at 40 I need it but things have deteriorated to such a point it can’t be done?

Lots to think about.  And a few month wait to clinic I think.

In the meantime I had six more lovely botox injections and I’ll wait to see what the surgeon says. That will be a joint clinic with my neuro. Depending on when it comes through I may skip my next spasticity clinic appt.  Basically if it’s in a couple of months or say six months then I’ll go back in four months as planned for more jabs. But if I see the surgeon around the time I’d be due jabs they’ll combine giving me them with it even if it’s not in spasticity clinic.

>Hospital Thoughts

>Hospitals are interesting places to people watch and get inspired for writing. This hopefully catches some of the experience. In a way I wished I’d taken my iPad and written there but I enjoyed reading my book.

Day 36 of 100

Hospital Thoughts

Hospital smell
Grotty food like school dinners
Too many people in a small space
And some kind of cleaner.

Paramedics and transport techs
Nurses, doctors and other staff
Add in patients, visitors and family
A constant swarm of people

Wheelchairs wheel all over the place
Powerchairs glide silently
Stretchers trundle and squeak
And crutches add an extra rhythm to footsteps

An alcohol wipe gets rid of bacteria
The smell probably scares them away
“sharp scratch now”
The drug stings and burns its way in

More blood than expected drips down my leg
Cotton wool and pressure does the trick
Too many plasters to count
And gloves that rip.

Drips beep
Lifts announce “floor one”
Patients cry
Others laugh

Phones ring
And nurses scurry
Hospital life is all
Hurry hurry hurry

Deep voiced explanations
Technical words
I pause
Then ask for clarification.

A one off visit
Outpatients.
But fear grips
What if multiple visits are needed by this crip?

The news isn’t so bad
The doctor seems very happy
Says its good to meet me
And that they’ll leave me be

A firm handshake
A smile – and thanks
Drop down a floor
Wheel out the door.

Don’t look back
Going home at last
It’s been a long day
Very glad to get away

Hospital life never stops
With its highs and lows
Noise, trauma and bright lights.
Full of success and nasty shocks

But from my thoughts it is gone
(although the memory lives on)
It’ll be months before I’m back there
In amongst others receiving needed care.

♥ Emma

>The Man With The Needles

>I’m going to see my neurologist tomorrow in spasticity clinic. Hopefully this will be a joint appt with my physio (it’s meant to be but the track record on that isn’t good) to discuss whether I need more Botox. And for me to have the jabs if so. I suspect that will be the case. I also wonder if my baclofen will be upped.

I described that to a friend as “going to see the man with the needles” last week and thought that was an intriguing idea for writing.

Today is day 35 of 100 which feels like a huge number of days achieved. Especially as I almost forgot to write at all.

The Man With The Needles

“I’ve got to go and see the man with the needles tomorrow”

“you’ve got to go and see who?”

“the man with the needles.”

“oh… Ok and who is he when he’s at home?”

“I told you. He’s a man. With needles.”

“Right. That’s cleared things up.”

“I think he specialises in needles you see.”

“Does he not have a name?”

“He does”

“Which is?” You might be out there but I doubt even you call him The Man With The Needles to his face.”

“It’s… It’s… Oh god what is it?! I know this, I know I do.”

“You’ve forgotten, haven’t you?”

“No… Give me a minute, it’ll come.”

“Told you your nickname habit would get you in trouble someday.”

“Oh Jesus this is pathetic, even for me.”

“Whatcha gonna do? Walk in there and ask for The Man With The Needles, hope they know who you mean?”

“I might have to. Oh god this is going to be embarrassing.”

“it is. Bet they laugh. I would.”

“yeah, thanks for that.”

“So anyway, what does he do with these needles this specialist guy? Its gotta be something skilled to hear you talk so what is it? Tattoos, piercing, fillers, Botox?”

“He sells them”

“He sells them?”

“Yup he sells sewing needles.”

♥ Emma

>Details on my new seating

>Two weeks ago I went to Wheelchair Services for a new assessment. Two very productive hours later I left with a completely pimped chair and all new seating.

And it was so easy.  I didn’t have to fight for anything and didn’t need to argue my case at all – the therapist simply saw me and talked to me and made suggestions.  That was so different to my last assessment where I thought I was constantly having to push for things (and where I didn’t get what I needed looking back).  I’d actually made my Dad take the afternoon off work to take me so I had back up – and had given him strict instructions as to what we needed to get a definite answer to etc etc.  Turns out I could have gone by myself.  But it was absolutely lovely to get there just the right amount of early and to leave as soon as the appointment was over – and that the only stops on the way home were the ones we wanted to make.  I’m very grateful for hospital transport but it does make for a very long faffy day usually!

The first thing she did was give me a new wheelchair cushion.  It’s a jay2 and she added an insert to the left side to level out my hips (my left hip was previously lower than the right). This led to the discovery that the curve in my spine is high up and with level hips, my shoulders aren’t level.  Nothing can be done about that.  She also added a pommel to the front of the cushion to help me keep my legs/knees apart.

The cushion is so high that I then needed my footplates raising.  And if I’m honest in the past two weeks I’ve found they weren’t raised high enough – must get my dad to shove them up a bit more.  I know how to do it but I need to be sat in the chair to make it work and that’s not going to happen if I try!

The frame of my chair needed to be dropped lower on the wheels (or the wheels were changed to a higher position on the chair, more likely). That was to make it easier for me to reach the wheels and push myself.  With the new cushion I felt like I could reach but it wasn’t as easy – I had to reach down rather than putting my hands there and they were in exactly the right place.  It then became obvious that my casters needed repositioning as moving the wheels had left me with a very bucketed seat which isn’t right for me.  We won’t talk about the amount of yarn and other crap she pulled out of the workings when she took them off to move them.  I knew there was a load there but I hadn’t realised it was that much.  Cue the OT commenting that that might be why it wasn’t very manueverable. In an amused kinda way.

In terms of the backrest of my chair (I already had a jay3 backrest) laterals were added.  I pretty much knew that I needed laterals but had anticipated that this would be where the problem and the needing to fight would be.  This was due to the fact that all the physios I saw over the summer (and the fact that serial casting requires two people meant there were a lot) tended to follow up remarks about the lack of support my chair gave me with a comment as to my lack of arm rests.  But as I finally pointed out to them, arm rests do not give support on your sides and as that was what they were talking about my lack of arm rests was irrelevant.  The physio in question agreed with me about that but it had made me apprehensive about the discussion when I got to wheelchair services.  I need not have been because there was never any question of my not having laterals and arm rests didn’t get mentioned at all.

The laterals in question are swing away ones.  They have a catch to move them out of the way as needed.  I’ve also found that they move if I deliberately lean to one side (to reach something) although not as easily.  I’m not sure if that’s meant to be the case with swing away laterals or not.  It’s a little annoying if I’m honest but I could see it as something that’s meant to happen.  Possibly to stop people hurting themselves but also as a memory prompt – if it moves when I’m not deliberately reaching over then I realise that I’m tipping to one side (the left almost always) and can right myself.  I like them, they help a lot and they are really inobtrusive, hardly noticable at all.

The final thing that was done to my chair (for now) was the addition of a spine align kit.  This amuses me because it sounds all high tech and complicated and like some sort of painful metal frame.  But it’s two foam wedges with velcro on them placed between the plastic shell of the backrest and it’s cushion.  These help the cushion mold to the shape of my back more and make it more comfortable.

In a few weeks I will be getting something fitted to my footplates which might stop my legs going into extension when I wheel.  I’ll believe that when I see it (it working I mean) but I’m willing to try it.  I think they’re called Skate Shoes but googling can’t find them.  It’s something shoes anyway.  They are screwed on top of footplates and you put your foot/shoe in them and they’re shoe shaped.  Usually people have them to stop their feet slipping backwards off of the footplate.  I’m having a cut down version (hence the delay) put on the wrong way round in an attempt to stop my legs going forwards.  I very briefly tried a calf strap but as I told the OT it hadn’t in the past it didn’t work. (she believed me but had asked me to try it so she could see what happens)

The fact that these are called something shoes was a cause of (slight) amusement as we were leaving the hospital when my Dad said he didn’t think it would work as I have enough trouble putting shoes on and wouldn’t be able to put these things on too.

At the moment I’m not getting a new chair but there is a brief possibility I might find I need one.  The one that was discussed very briefly was XLT by Invacare which is a rigid chair and looks great.  Altering my seating and giving me a new chair at the same time wasn’t thought to be a good idea as it would make troubleshooting any problems doubly complicated.  As much as I would like a new chair… I’m thinking it probably won’t prove to be necessary. Sadly.

I’m loving my new seating but still getting used to it really.  I did find the fact that the chair I have (an Invacare Action 3) retails for £495 and the seating I have (a jay2 cushion and a jay3 backrest with laterals) retails for over £800 a little hard to get my head around but there you have it.