Unwinding (literally) for a relaxing bath and recasting - all fine

J was happy to stand still while I unwound his cast - it was as if he knew it was what he wanted to happen, so was happy to let me get on with it.

As I snipped the shoulders with the scissors, he grinned at me.

And as I unwrapped it and told him he would be having a proper bath, he peered over the edge, eager to get in! He amazes me with how much he understands.

Gosh there was a lot of material - not just the hard bandage but also the cotton wool wrap near the end, as well as the stretchy jacket. No wonder he gets hot in there!

However, his skin was perfect (not even dry or red) and there were only two tiny bits of food down it (I'd expected far more - more like when you turn the computer keyboard upside down. Or maybe you don't eat at the pc unlike me... mine is dreadful!).  I can't tell if there's been any change - and anyway, 2 weeks of treatment is too early tell.

It has changed the shape of his belly though. It's like a corset, and has pushed in the top part, but underneath is still sticking out.

It felt fantastic to hug him properly.

He so enjoyed splashing in the bath. I find his memory remarkable - he picked up the shampoo and pointed to his hair. He hasn't seen that bottle in 2 weeks, but remembered what it was for! He's also much stronger - and could operate the button on the duck to make it spray (he couldn't do that 2 weeks ago).

This morning we had another early start - but still had time to inspect the washing machine and vacuum cleaner.

Here's my backseat driver.

Who fell asleep at the wheel on the way.

J recognised the room and recognised the plasterer and was not impressed to be back again, but the actual casting went ok all things considered.

Using what we learnt last time, the plasterer cut away the sections under J's arms and made sure there was more soft material all the way round. It's also a bit longer, so his tummy isn't misshapen. That didn't seem to be causing any issues with nappies when I changed him afterwards, but the risk of it getting dirty is greater.

Unfortunately, my memory card was full after just a few shots.

To celebrate, we then went for breakfast at the hospital caff and J had a whole sausage (I thought he'd only manage a bit)!

Now we know what to expect, it feels easier (even though it means J is able to anticipate what will happen when we walk in).

He did have some issues with getting up from the floor afterwards (the length of this cast exacerbates what was already difficult last time) - but hopefully he'll develop a technique to manage that. At one point, he was stuck in what looked like a yoga position in an upside down V shape with his hands and feet on the floor and needed rescuing.

What I don't understand is how it will rotate the spine if that's what's needed. The MRI scan will tell us whether J's spine is twisted.  There is a different type of cast - the Mehta cast which Miss Mehta designed (named after the now-retired consultant who did a lot of pioneering research into infantile scoliosis) - which is put on under general anaesthetic and using traction so it makes sense that the rotation can be done in those circumstances. The plasterer assured me this kind of cast can do it too. I guess I just have to trust for now and wait for the scan when we'll get some measure of the problem. 
  

I'll laugh one day

Since I started back at work, I have had one thing after another. I will laugh one day, but it has to be said the past 6 weeks have been rather tiring! This is not exactly relevant to J's scoliosis, but just for the record:

• Scoliosis
• Starting at the beginning of May with the appt with the local consultant who referred us. Then there was the anxiety of the prospect of a long waiting list and the decision to go private, followed by beginning treatment with casts.
• The kitchen
• There was a serious leak from the flat upstairs and much of the kitchen needed replacing/repainting (tiles, units, worksurfaces, floor, ceiling, walls). So the kitchen needed emptying and items replacing before and after work. For day after day. Including one Sunday (when we microwaved lunch in the lounge).
• The hot water tank
• This was particularly fun. It split while I was out a couple of weeks ago and I came home to huge quantities of water in the hall cupboard and hall. As the hall cupboard was full of stuff from the kitchen and there is a very inquisitive toddler on the loose, it created a bit of a problem as to where to store/dry out everything safely. The hot water is turned off now. At some stage I'll get someone in to repair/replace it!
• The lounge window
• Water again. When it rains, there is now water coming in. Depending on how much it rains, there can be a LOT of water coming in. 
• The garage roof
• Water again (you see a theme?). And because the garages are in a block, it depends on other people as to when the roof can be repaired. 
• The car
• This is a saga. I will spare you the graphic details. Basically: someone ran into the car when I was parked on Boxing Day 2010. It was repaired under insurance but they welded near it and it was covered in little bits of metal which started going rusty (industrial fallout). It has taken 6 months and huge amounts of effort to get Churchill to get it sorted. They kept sending letters asking whether I wanted to complain! The time when it finally went to the garage coincided with J's first cast - so sorting the courtesy car drop-off and pick up was more complicated than it should have been.     
• The washing machine
• This has broken down twice (meaning we were without a washing machine for 3 or 4 days on 2 occasions) since I went back to work. It didn't break down while I was on maternity leave. Oh no.   
• Sleep
• J was never the best sleeper and things have got better. The trouble is, although he's only up once or twice a night now, I haven't been able to get back to sleep if he's up after 3am. And 3 hours sleep split into bits is not enough! I shouldn't complain though - I could be getting 2.5 hours like others I know (I don't know how you do it C!).

I know most of them are not big things. But taken together, they've made life "interesting".

People ask how the return to work has been. Busy!

Bathtime

In preparation for the new cast tomorrow, I will be removing J's cast tonight and giving him a bath. Finally.

I've been looking forward to this for 2 weeks - especially given the heatwave (boy, was he sweaty yesterday afternoon). I just hope he isn't out of the habit.

I haven't blogged for a while - but J has been kept busy (see below!). Get them working at an early age, eh?! I don't know where the obsession for vacuuming comes from - it's not as though he sees it that often at home!

 I don't know why I bother making food when we can just go out and graze...

Do you say something?

Twice over the past week I've met parents of younger babies (one 2 weeks old and one 5 or so months). Both babies had twisted necks (torticollis) and the older one had developed a flat head (plagiocephaly) as a result. The mother of the two week old said her baby always looked to the left.

Those were both indicators that the specialists found interesting when diagnosing J. They don't mean those babies have got scoliosis - there are other reasons why children have those two things.

However, I wish someone had said that they could mean I should keep an eye out for other things for example scoliosis. I sought osteopathic treatment for J's neck but part of me wondered whether perhaps I was being a typical first-time parent (ie overreacting) and should just relax as it's normal for babies to straighten out.

Given the HUGE waiting list, the progressive nature of scoliosis in 15 % of cases and the fact that the treatment for infantile scoliosis is basically designed to harness their rapid growth at this age (so if you seek treatment later the angles may have got worse and you've missed that window of opportunity) I would much prefer to have been given a heads-up early on.

So I decided to mention J's condition to both parents. And lo and behold, the mother of the 5 month old said that there were two cases of scoliosis in her family (an uncle and an aunt)! She didn't seem to have connected this fact with her child, even though some forms are genetic. So I said that it's at least worth keeping an eye on and maybe mentioning to the doctor if she does think there is anything different about her baby's spine.

I don't want to scare people. And I'm certainly not medically trained in any way. But I have decided it's worth mentioning and that it's how you tell people that's important: I can explain J's condition and treatment and what indicators made me aware of it. They can mention it to the doctor if they wish. At least they'll know what scoliosis is (I'd never even heard of it)!

Cast - what cast?!

J has had his cast for nearly a week now and it's been amazing how quickly he's adapted to it. He was practically running to get to the swings yesterday! A couple of friends we were with at the weekend said they wouldn't have known he was in a cast.

He has re-learnt how to get up from the floor when he falls over - it was really interesting watching him working that out. Over a couple of days he went through the stages quite slowly and made his little "I'm frustrated" noises sometimes, but now he's about as quick as he used to be with his old technique. He can't bend/flex his back, so I think he's using his arms and legs more.

There's still a small patch of sore skin under his arm despite applying sudocream. I don't think the shape of the cast is quite right, but it doesn't bother him too much - it's just red and dry. His tummy is completely fine. I'll mention it at the next casting so we can get the shape and felt right next time.

Thankfully, we haven't had hot weather - it must be quite warm wearing all those layers. The cast pushes in his little pot belly and his trousers fall down more, so I've been putting him in dungerees instead and he looks so cute.

Not having baths hasn't bothered him in the slightest! I thought he might try and get in or show in some way that he wanted one - but no! I wonder whether he'll object to it when he finally does get to go in? So long as I use a nice warm flannel and keep him distracted (the toy vacuum cleaner I bought on Saturday at the NCT sale is working a treat at the moment) he's fine with a quick wipe.

Good news: we've got a date for the MRI scan - Tuesday 19th July (much sooner than we were told it would be). It says he'll be sedated, but I'm not clear whether that means general anaesthetic or not. He's allowed food up to 3 hours before and breastmilk up to one hour before, so thankfully we won't have to endure a horrendous car journey into Birmingham. It's not till noon, so we can have a good breakfast and set off early. The scan is very important to help us understand what's causing the scoliosis and whether there's any rotation of the spine. By then we'll be into the 3rd cast, so it'll be interesting to see what progress has been made (fingers crossed!).

So all in all, one week on we're doing really well. We've worked our way through the logistical problems and are more or less back to normal. I guess the next casting will be more difficult in some ways (he knows what he's in for, so might object more!) but we now know that within a short space of time we should be back to normal again.

Ups and downs

We went back to the hospital today and the plasterer took a look at J's cast and the sore patches of skin. He cut away semicircles of cast under J's arms and that has helped - J was able to put his arms down nearer his sides. He also put adhesive felt under the other arm and at the front.

I have no pictures because it took 5 (yes FIVE) people to hold J down. He's very strong and was determined he didn't want to lie down on his back while his cast was adjusted. The scissors the plasterer used are cleverly made - they are curved and the bottom one has a plastic blob on the end so it can't jab a twisting baby.

J gave the plasterer such an evil glare when he saw him! He clearly remembers what happened.

Apparently sudocream is a good thing to use on the sore bits (phew!).

So we continued our day - me back at work and J in the nursery. But when J went down for his afternoon nap, they noticed that the felt had stuck to his stomach and he couldn't get comfortable. When we got home I took a look and it wasn't just a little section but the whole stretch across his entire belly from one side to the other, with a good couple of centimetres of highly adhesive felt stuck to it.

I rang the hospital again to see what they'd advise. They suggested pulling it off like a plaster in one yank while holding the skin - they thought he'd cry a little bit then be ok. I don't think the nurse I spoke to understood which felt it was. It is incredibly adhesive (not like a sticking plaster) and went all the way across his belly.

In the end, we daubed sudocream on cotton buds and "soaked" the felt with cream, pushing it little by little till it became looser. A slow process and J cried loudly throughout. Even doing that, there are chunks of adhesive left on the skin where the felt came off, but we couldn't get the adhesive off. God knows what would have happened with a yank. I think skin would have come off. The photos are rubbish because of the light - but may give some idea of what we faced.

So we're still left with the front section being rather rough against his skin.

Poor J.

When the next cast is fitted, I think all the edges need doing very carefully at the time, with a good depth of padding so it doesn't come off and stick to the skin.

There's still a very red patch under one arm - lots more sudocream needed there.

However, I don't want to give the impression that J has had an awful day. We have had lots of lovely moments. It's hard to give an overall impression of a child's day, isn't it? Let's end with 2 photos that show one of the many happy moments: J having a go at being in the driving seat. He immediately knew where the key went, and if he was a bit bigger with longer legs I reckon he'd have had a go at driving!

Links to scoliosis-related websites (NB this is a work in progress!)

Links to some information and websites that I've found interesting/useful - more will be added as I discover them (if you are aware of other useful ones, please let me know!):

http://www.sauk.org.uk/ (Scoliosis Society UK)

http://www.srs.org/ (Scoliosis Research Society - US based)

http://www.britscoliosissoc.org.uk/ (British Scoliosis Society)

http://www.bsrf.co.uk/f (British Scoliosis Research Foundation)

http://www.spinekids.com/ (the website has been "closed" due to spammers, but the information section for parents is good: http://www.spinekids.com/parent.shtml  there's a book page: http://www.spinekids.com/bookstore.shtml and the personal stories and info for kids looks v comprehensive http://www.spinekids.com/links.shtml)

http://www.eurospine.org/p31000269.html (EuroSpine - the spine society of Europe - including information in French, German, Spanish and Italian)

http://www.dipity.com/timeline/Scoliosis/ (a timeline showing scoliosis related events for example news stories and scientific advances)

http://www.fixscoliosis.com/content/ (different ideas about treatment for scoliosis)

http://infantilescoliosis.org/ (US website - an excellent resource with lots of tips and ideas, plus personal stories)

http://www.shrinershospitalsforchildren.org/en/CareAndTreatment/Orthopaedics/Scoliosis.aspx (basic info about scoliosis)

http://www.scoliosisresearchtrust.org.uk/index.html (the ARISE charity has folded, but there are useful info sheets on the website)

http://www.midlandsscoliosis.co.uk/ (local private clinic providing advice and treatment for scoliosis)

Poor wee man

My poor wee man was very sore tonight. His skin was very red under his arms and round his middle. His belly button was very red, especially the creases. It hasn't been like this since he was newborn. He was holding his arms with his elbows up high and looked like an American footballer. He's been very tired this afternoon - it must be very tiring to carry such a weight and have to deal with the inconvenience of not bending. Each time he falls I would imagine the cast must jar/chafe.

I rang the hospital and they said to take him in tomorrow morning. They'll put more felt around the cast rim and give us some cream.

He found it very hard to sit in his high chair tonight - he normally slouches in it and with the cast he looked very uncomfortable and was crying to get down. I ended up feeding him at a little coffee table with him standing!

The first 24 hours with a cast

Basically J has been fine and the cast has not been a big impairment to his mobility. He slept really well too (I bet he was exhausted!).

The challenges so far and action taken:

• Sore Skin: last night his skin was very sore and red under one arm and round his middle. He's also been walking round with his arms held up slightly (elbows high) so that they don't rub.
• I added extra felt to the cast - fortunately I'd asked for some (it wasn't offered). It needed 2 adults to hold J down to apply it and we still found it partly stuck to his already sore skin as we tried to turn it over the edges. Poor thing. 
• Next time I'll ask for felt to be put under both arms and round the middle - they'd only put it under one arm.
• I put sudocream (antiseptic healing cream) on the red patches. He thought I was going to tickle him and was ready to laugh, but then looked confused - I feared getting cream everywhere, so couldn't make it a game at the time
• I've started picking him up differently and the nursery are doing this too. My natural way of picking him up is under both arms, but if you do that the cast moves - plus those are the areas where the skin is tender. Now I put one arm through between his legs so he sits on my arm and put the other one under one arm and round his back to support him. Otherwise the cast moves as you pick him up. It feels more tiring for my back and it was tricky with the car seat, but I'm sure we'll get used to it!
• Result: his skin looks less red now
• Loss of flexibility and mobility
• I've noticed that if J loses his balance, he's slightly more likely to fall over now because he can't bend to get upright again. He used to look like a surfer at times as he went back and forth, but managed to stay upright - with the cast he just sits down. It's great that he had already mastered walking so he has the confidence and muscles. Now he just needs to learn to adjust to the effects of the cast. I would imagine he'll get better at keeping upright over time.
• He can't roll over as well as he could. This was very helpful when I was changing his nappy - I'm fed up with playing "catch the baby" and hanging on to a foot while trying desperately to open the nappy/stick the tabs down with the other hand. I would imagine he'll get better at rolling too and we'll be back to normal very soon.
• Keeping clean and dry
• Not having a bath last night was HARD. He's had one every day since he came out of hospital age 3 days. It felt awful to go into the bathroom, run some water and then just use a damp flannel on him. We have a huge heap of bath toys (I'll have to take a photo to give you some idea of the scale- you name it we have it) and he adores pouring and splashing. We have lots of songs about ducks, splashing etc. He's also just been given a teaset and loves pouring and drinking "tea" (complete with lipsmacking - SO cute! It's made me aware that I go "ah that's nice" and smack my lips when I have a cuppa).
• I need to adapt our routine so we have a different "special time" like the bath was. You can't leave a baby in the bath on their own, so it's a very nice one-to-one time. What else can we do? We already read books, but he has to be in the mood for that. Something active we can both join in with would be good.
• Cuddles
• I've lost my squishy baby and I miss that squishiness already! Of course we're having lots of cuddles and tickles and everything, but he feels very different. I'm sure I will dare to do some rough and tumble games as we used to the cast, but I'm very wary about the friction of the cast on his skin and daren't be too rough at the moment. I need to get used to this quickly - we have another 3 years of being in casts/braces. I will definitely be making the most of the evening before re-casting when I get to peel off the cast and he can have a bath.   

J's first cast 14 June 2011

What a star!

J was smiley and charming (as usual) for most of the time at the hospital (and on the way there and back, despite the early start).

Understandably, as some of the pictures below will show, he wasn't too happy when the actual cast was put on (having your hands held up by one person while another prods you in the back and a 3rd wraps lots of stuff round you is enough to make anyone a bit grumpy). But he was back to his normal smiley self very soon afterwards. What you have to imagine when looking at these is the sound of mummy doing various renditions of his favourite songs (eg Old Macdonald) and all present joining in with the mooing and so on. Plus imitations of the animals on the walls (all covered in cartoon pictures), the mixer (J LOVES the kitchen mixer) and anything else I could think of.

Setting off at 6.30am

Lots of wires to explore - much more interesting than the toys I took along

A toy vacuum cleaner- yay!

First of all there's the stretchy towelling "vest"

Then a piece of padding is inserted at the front - it's removed at the end when the cast has set, and means there's room for the stomach to expand after meals

The special plastic bandage is wrapped round (it "sets" later to make a soft cast a bit like tupperware)

The consultant applies pressure on the area of the spine which needs adjusting

Then felt is applied round the areas which might rub

J spotted a machine that looked like a vacuum cleaner on the floor

The pad is pulled out

Mummy's concentrating on the instructions: keep it dry and clean; don't let J put things down it (yes, I can imagine him doing that!); give a flannel wash (no bath or shower); don't let him play in water or sand; the night before the next appointment, peel off the cast, give J a bath and check the skin (mention any problems next time)

Back on the ward and J's back to his happy self

And to show you how happy he was with the cast afterwards, here are a couple of video clips - he was back to his obsession with wires and machines J