Friday, 28 October 2011

Think outside the box.

Sometimes, living in a world full of chart obsessed people can have its advantages. Without statistics and averages some things just wouldn't work. Statistics can help give a general overview of a multitude of things from TV ratings to education targets, from scientific projects to life expectancy predictions for people with life threatening illnesses.

The downside to this obsessive culture is many people no longer have the ability to think outside the box. If the chart says pink then in their eyes, obviously the result is pink. No other variables are taken into consideration at all even when there are clear indications that the result is actually blue.

We have had the pleasure of being in a situation where our result was 'blue' however the chart/graph/statistic/law of averages or whatever clothing it was dressed as this time says 'pink'.

Allow me to enlighten you all on one of the funniest things we've been told in a long time. A few years a go I may have reacted very differently but now I feel very empowered regarding Sophie's health and well being and I was able to laugh.

Sophie had her height and weight etc done at school by the school nurse a few weeks back and she phoned me to fill me in on her findings as per chart/graph/statistics/law of averages etc etc.

Now I must add a disclaimer for her school nurse as she clearly is rebellious to the chart and is able to factor in other variables to give a more rounded conclusion to her findings.

She started the conversation by telling me the percentiles Sophie was on for her height, exactly where we already know she is, and then proceeded to tell me where Sophie was in terms of percentiles for her weight, again exactly where we know she is. By we I mean Ian and I, her whole entire CF team, her whole entire feeding issue team and her whole entire TOF/OA team.
So on the theme of approximate statistics that means 3 dieticians, 3 specialised consultants in their chosen field, approx 6 other doctors and 3 specialised nurses.

I was expecting her to say Sophie was a little short for her age which we already know, but no that wasn't it at all.

Apparently according to the chart, my 4 year old, Cystic Fibrosis suffering, oral phobic, tube fed child is overweight and we were being sent the government approved letter inviting our child to enter a healthy eating program.

Now you may call me awkward, over protective or even sensitive to my daughters needs but am I the only person on the planet that sees something wrong with the above?

My response on the phone was to laugh to which her school nurse did see why. I mean even if we took a few variables out of the equation it is still astonishing to think that Sophie fits into the 'typical' mould here.

We celebrate excess weight round these parts, it's extra strength to fight off chest infections, it's also extra reserves while we are tube weaning where it's inevitable Sophie will lose weight. Not to mention how on earth my oral phobic child would be able to participate in a healthy eating program seeing as she DOESN'T EAT.

Now do you see why I laughed?

Luckily her school nurse has wrote a detailed account in her notes as to why the program is not appropriate for Sophie, but she is sending us the letter so we can have a laugh at CF clinic next week.

Sophie is currently back on oral antibiotics as she has been coughing up green gunk again. This time she is entirely well and now deep down in my heart I am thinking we may be heading for IV antibiotics. It's been nearly 12 months since her last tune up and seeing as she is colonised with pseudo, I think the time is drawing closer for him to have his ass kicked again.

Will let you know what her team decide next week as full CF clinic and port flush are due.

Ian and Sophie carved this, it's rather good isn't it? The first picture is an attempt to photo it at night lit up.

Sophie is steadily improving with her writing, she did me a montage while at her nans.

Take care everyone, I hope you are all okay as it's very quiet on the blogging front currently. I know we haven't been very regular lately but I'm working on improving this :). I'm also working on a post explaining what gene therapy is all about and how it could potentially change the lives of all with Cystic Fibrosis.


Wednesday, 5 October 2011

The real window of opportunity?

As most of you are aware, Sophie doesn't just deal with one condition, no that just isn't enough is it? She has battled with two very different conditions every day since she was born.

The focus of the blog usually revolves around her day to day life and CF rearing its head every now and again currently. I do find I touch on her TOF/OA issues but it just never seems to be in the spot light often.

I'm hoping this will change in the future but in a positive light.

We met with Sophie's psychologist and dietician who deal with her oral aversion (eating phobia) last week. We had a long discussion about where we felt Sophie was at now in regards learning to eat. She has made some small advances but I often feel like I over ooze positivity in how well she is actually doing or I don't mention it at all.

Mostly the reason for me not discussing it is basically down to emotional wear and tear, period.

I can honestly say that dealing everyday with a child who just wont eat is draining. Physically and mentally, and it is one of the hardest things Ian and I have had to deal with, with Sophie.

I'm not talking fussy eating here, that's something completely different. I'm talking nothing going into the mouth and if it makes it in there by some miracle, it's spat out or retched out before given the opportunity to be chewed, sucked or swallowed.

The endless tube feeds and living life around a schedule because we have to give our four and a half year old milk throughout the day so she doesn't starve. Mixing up prescription formula into baby bottles so it's easy to measure out each individual feed.

We have been doing this everyday since she was born.

It's only when I really think about it I realise how draining the whole thing is. It was hard in the early days because all anyone wanted to do was ask how she was getting on with her eating. Ian and I found ourselves constantly repeating ourselves which in turn brought out all our anxieties and emotions about the whole situation. It felt like a constant reminder. In the end Ian just told everyone that "when she eats something we will tell you, we'll let you know if there is any change at all".

Currently the maximum Sophie will try and eat is about 3-4 teaspoons of either yogurt or ice cream that's it. She will lick and suck other things but doesn't really eat them.

You remember the failed tube wean we tried last year? She wasn't ready to take the next step then but we all feel she is now.

Last year I was very apprehensive about it, it was uncharted territory and I had no idea how she would react. This time feels very different, I'm much more relaxed about the whole thing and I know now that if it doesn't work it's fine. We can try again in the future if need be.

So we are already over a week in and this time we are doing things very slowly with milk reduction. Sophie seems to understand what we are doing and is trying her hardest to eat.

For the first time ever, Sophie ate a whole pot of yogurt. Every. Last. Morsel. And, I just sat there with my jaw on the ground in disbelief as she asked for another, which for the record she ate half of!

Tiny steps but HUGE leaps.

I'm not sure how this will play out in the long run but I feel very different this time. Is this actually the window of opportunity and last time was a warm up to the main event?

I guess only time will tell right?

I hope you will all stick with us on this journey once more as I know there may be times we need a huge pick me up!

Will leave you with a few recent pics of Soph...

She's ready to start the journey now :) Ian has started to use his bike again as rehab for his knee and Soph still isn't quite able enough to ride her bike with him. She'd never keep up so he bought this trailer for her which attaches onto his bike and she absolutely loves it. She has to wear her bike helmet for real journeys but this was just a try it out adventure. She squeals with so much excitement when out and about in it that she has cleared her own chest several times!!

"Mummy I really want one of these bags"- Sophie aged 4 clutching Mummy's Louis Vuitton!

Who knew reading was so tiring?
She wore herself out after a shopping trip and had also had her port flushed earlier on in the day.

Take care all xx
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