Thursday 18 August 2011

Cast free for a week :-)

Yippee!

J is allowed to be cast free for a whole week when we go on holiday to the beach :-)

It'll be fantastic to enjoy baths, swims, playing in the sand and **HUGS**

I've gone out and bought J a bucket, spade and mini watering can to celebrate - he's been wandering round the house with them looking very proud of himself.

Wednesday 17 August 2011

New blog!

I have decided to set up a new blog: http://moreofmummysmusings.blogspot.com/



My intention in setting up the new blog is to have a space to:
  1. Think about parenting
  2. Record our family life in all its richness
  3. Reflect on life in general
  4. "Keep" the quirky things that are so easily lost, but which brighten up the day
I will of course be keeping this blog going, but it has a very different purpose - it is a record of my J's treatment for infantile scoliosis - and although some posts could fit in either blog, I will try and keep J's treatment separate.



Thursday 4 August 2011

A question of language

When you're used to the relatively Politically Correct world in which we now live, it can be quite shocking when you hear some of the medical terminology.

The letter from the hospital, for example, stated that my son had an appointment with the "Spinal Deformity Team".

Deformity. What a word!

de·for·mi·ty
1. The state of being deformed.
2. A bodily malformation, distortion, or disfigurement.
3. A deformed person or thing.
4. Gross ugliness or distortion.
5. (Medicine / Pathology) Pathol an acquired or congenital distortion of an organ or part
6. (Psychology) a defect, esp of the mind or morals; depravity

I can see why they say that - it distinguishes his case from Spinal Surgery or Vertebral Trauma - but it's quite stark.

It also has such negative connotations in many walks of life. The definitions above point to "ugliness" and "depravity". It conjures up images of Hunchback of Notre Dame (now if only they'd had casting in his day!!) and we all know that he was actually a real sweetie once you got to know him (well, according to Disney anyway!).



I used to work at an organisation called L'Arche with people who had special needs - some of whom couldn't walk, talk or eat by themselves and needed 24/7 care whereas others were fairly independent. There are 137 L'Arche communities in over 40 countries worldwide and as well as day-to-day personal care within the house where I lived, I was involved in translating and interpreting (I speak French, German and Spanish), for example at their international meetings, and so was acutely aware of the question of language.

The terminology has changed a huge amount over the years and is different in different countries (even among the English-speaking ones) which means you might use the "wrong" phrase even if you have the best of intentions.

I noticed recently that on the L'Arche UK website they now say "people with learning disabilities" whereas on the L'Arche International website they use "people with intellectual disabilities" or "people with a developmental disability". When L'Arche was first founded by Jean Vanier in the 1960's they still used terms such as "retarded" and later on "mental handicap". All such powerful and emotive terms.

The key to it all is, I think, respect for the person we are referring to. It's important to keep in mind they are a person not a condition (not using "the disabled" for example).

Of course, many of the medical terms are written in Greek or Latin which obscures their meaning for most of us - yet often the terms are extremely literal. The derivation of orthopaedics and scoliosis is a case in point:

Orthopaedics
According to Wikipedia, "Nicholas Andry coined the word "orthopaedics", derived from Greek words for orthos ("correct", "straight") and paideion ("child"), when he published Orthopaedia: or the Art of Correcting and Preventing Deformities in Children in 1741. Correction of spinal and bony deformities became the cornerstone of orthopaedic practice."

Scoliosis
Scoliosis is derived from the Greek word skolios meaning "crooked" - a very literal description of the curved or S-shaped spine it refers to in medicine!

On reflection, I don't really object to the use of the term 'spinal deformity' as it describes my son's condition. But I think those in the medical profession need the occasional (well-phrased!) reminder to prevent them becoming immune to how powerful such language can be!

Wednesday 3 August 2011

24 habits of highly annoying toddlers (who, of course, we love anyway)

If you have a toddler, or used to have a toddler, you may appreciate these "24 habits of highly annoying toddlers (who, of course, we love anyway)"   (a great website written by Mike Shields)

NB Some are not terribly PC, some are clearly US-based and they're not to do with scoliosis but hey... they made me laugh :-)

For example:
Habit 8: Making the house look like insane people live in it
24 habits of highly annoying toddlers, who we love anyway: Making the house look like insane people live in it 
Toys, magazines, and clothes are strewn all over the floor; the drawers and cabinets are all locked; and people in bathrobes and pajamas are often found walking back and forth moaning for coffee. Oh, and that “cleanup, cleanup, everybody, everywhere” song? We don’t sound crazy singing that at all.

Habit 9: Ruining nice/important/sentimentally irreplaceable things
24 habits of highly annoying toddlers, who we love anyway: Ruining nice/ important/ sentimentally irreplaceable things 
Yes, that picture frame had been in the family for years, but I understand that you needed to satisfy your teething urge with a piece of precious silver. No, really.

Habit 12: Providing unintentional injuries
24 habits of highly annoying toddlers, who we love anyway: Providing unintentional injuries 
Hello to you, too! Next time, if you could do it without giving me a black eye, my coworkers won’t wonder if they should report Mommy to the authorities.

Habit 13: Providing intentional injuries
24 habits of highly annoying toddlers, who we love anyway: Providing intentional injuries 
You know why I’m not going to bite you back? Because Mommy would kill me I’m the adult. 

Habit 16: Really loving repetition
24 habits of highly annoying toddlers, who we love anyway: Really loving repetition 
The first few times you pretended to eat that fake piece of fruit I bought you? Adorable. The 30th time? Um, nope. Oh, goody, we’re going to sing “The Wheels On The Bus” now!

Habit 17: Traveling heavy
24 habits of highly annoying toddlers, who we love anyway: Traveling heavy 
Going on a trip to see the in-laws? That’s at least four bags! Going to the playground for a half-hour? That’s two!

Habit 18: Being inflexible
24 habits of highly annoying toddlers, who we love anyway: Being inflexible 
“Sure, we’d love to make plans this Saturday. Here’s the thing: Jacob usually naps from 12-2, so we can have brunch early or meet for a late-afternoon coffee. But he didn’t sleep well last night, so he may go down for his nap early, so we’ll have to call you right before we leave to let you know when we’ll get there. And of course we need to back on the road by 6:00 to get home for dinner and bedtime. Does that work for you? We’re also available on Sunday at 6:00 a.m.”


Keep Calm and Carry On!


Keep Calm and Carry On Red Poster
  
 

 
We had a *M*A*J*O*R* nappy incident this morning. The only silver lining was that it happened in the kitchen so went on a hard floor and not the carpet. J was exploring the washing machine, and by the time I had grabbed a clean nappy, wipes etc, it was already all over:
-the washing machine
-the floor
-the wall
-the skirting board
-J's hair (lovely)
-J's feet including in between his toes (he was paddling in it...)
-legs, arms... (both of us)

I tell a lie - the other silver lining was that it didn't (I don't know how) go on his cast.

No photos. You might be eating. Besides - I'm sure your imagination is perfectly capable of conjuring up the image.

Poor thing - he was so fed up with me wiping and wiping (if only I could have just plonked him in the bath!) and got very restless despite me trying my hardest to be quick. And a writhing pooey baby is even worse...

Enough said!

Tuesday 2 August 2011

Last Thursday

I've been meaning to write up a blog about our trip to the hospital last Thursday but things have been rather busy.

It has given me the time to digest the results though and allow myself to feel happy - it *is* good news :-)

What I wrote was slightly misleading about the timescale and next steps though. The consultant said that the average age for resolution of cases like this is 18-24 months. He wasn't making a prediction about J specifically. In terms of next steps, we are still looking at casting for a while and then bracing (according to the previous consultant Mr Marks).

Back to last Thursday.

It was a long day and we had to wait a long time for each appointment (eg we waited for 50 minutes for the x-ray) and so J missed having a proper nap and eating a proper lunch. By the time we headed home he was exhausted - so much so that he fell asleep during the casting!!


Starting with Wednesday evening and the unwrapping and bath:

J now claps when he's happy and likes things - he was delighted when I produced the scissors for his cast!





 You might not be able to tell, but J is smiling and happy in these photos

 Again, his skin was red and needed TLC (ie E45)
 The cast seems to be making his belly button stick out (it didn't used to) and he has developed an interest in poking it in, then watching it pop out. He also tries to do this to mine!
 Any improvement? Certainly not visible to the naked eye.
 Is this what you call a cast off?!

 Up bright and early for the hospital

 The waiting area for x-rays had duplo and a few books which kept J interested for a little while, but we had to wait 50 minutes. Raisins and cheese helped too.

 Exploring wheel chairs was also entertaining
 In the x-ray room. J was very well behaved, but found it hard to lie on his side and stay still (he loves stroking my hair, so I knelt alongside and that helped).



Up to the ward to see the consultant and we found our old friend the vacuum cleaner :-)

What these photos do not show of course is the rest of the ward where the other children are. Some are obviously very sick (they treat bone cancer and other truly horrific conditions there). Seeing them, and their parents, is very sobering. Although scoliosis can be fatal (the most aggressive forms can compromise lung and heart function), J's condition is relatively mild. To say 'it's all relative' is extremely weak - being there certainly puts everything into perspective.



 J brushing up on the basics before meeting the consultant.
 Back to the plasterer - it's now over 3 (possibly 4) hours since we arrived and J is hungry and tired.


















 Cutting away the sections under J's arms to make it less likely to rub.




 J is starting to wilt...


 He's gone... Fast asleep!!!




 Poor little sausage...