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little miss lucia's lymphoedema life

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Archives for February 2015

Dot-to-dot can only mean one thing…new compression!

February 27, 2015 by Jo-Ann Greene 4 Comments

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Last week a friend of mine very kindly looked after Lucia for a little while so I could go to the dentist. While I was away Lucia needed to use the toilet and my friend said she was a bit worried about being able to pull her compression garments back up again. However, she told me she had found them surprisingly easy! So my immediate thought was it must be time for some new garments, as someone not used to pulling them up and down should NOT be finding them easy!

So I got in touch with our Lymphoedema Physio Lynne and we went yesterday to get Lucia measured. The measuring is a very thorough process as 42 measurements are taken between her feet and her waist to ensure the garments are made to fit her as perfectly as possible. It takes around 45 minutes of her standing still(ish) to get measured and she is now brilliant at letting Lynne get the job done.

Flailing legs

When she was younger measuring was always a hard job. The very first time she was terrified of getting the measuring tape put around her feet and legs and it was a torturous affair for all of us. Even the lure of sweeties didn’t make any difference. In the end we had to practically hold her down while Lynne attempted to measure her flailing legs without getting a kick in the face. Not fun.

The second time she was much better for the first 10 minutes and accepted copious amounts of white chocolate buttons while Lynne frantically tried to get as many measurements done while the going was good…then the rest of the appointment went downhill as she got bored. The same happened for the next few measuring appointments. After all, what toddler can possible stand still in one place for any period of time???

I remember discussing with Daryn and Lynne how brilliant it would be if we could have got her to stand in something like plaster of paris that would make a cast of her feet and legs that could be measured. Or if a special camera could take 3D pictures of her legs instantly and then a computer could do the measuring. Sadly both a no go!

Great girl

Now however she is brilliant. Plus, having been seeing Lynne every month now for two and a half years she really enjoys her visits. When we arrive for our appointment Lucia runs to Lynne with a big smile on her face and climbs straight up on the big chair and gets to work pulling her desk apart! Then she does a bit of drawing and on days when she needs measured we get through it without too much difficulty.

She still obviously gets a bit bored after a while but she loves Lynne using her as a dot-to-dot picture (a dot is drawn on Lucia at each point that needs measured). She also gets her own measuring tape to play with, gets some sweeties, sings some songs and has a wee chat.

And so the process is done for another few months and the forms have been sent off to Jobskin to get working on the garments. We look forward to getting them in a few weeks!

Filed Under: blog

The bug v Lymphoedema

February 14, 2015 by Jo-Ann Greene 4 Comments

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Hello! I know it has been a few weeks since I last posted but we have had tummy bugs going round and round the house and to be quite frank I am sick of boke! We have all had it and poor Lucia and I have endured it twice. Give me anything but a tummy bug!

So during this time Lucia has missed out on some MLD as when she is sick we obviously can’t do it. She also had a whole day out of compression as I just thought it would be really unfair to try and squeeze her into her garments when she was being sick and feeling like rubbish. (Cue minor panic from me). However, the panic didn’t last long as I was too busy cleaning, bleaching and washing on repeat.

I am really happy to say though that her Lymphoedema is in amazing nick at the minute. Her leg looks fantastic and she has a lovely wee bit of shape around her ankle. It feels soft and her little calf has definition. Her foot is also doing great, soft and supple and by the end of the day when we take her tights and shoes off we can even feel the little bone on top of her foot.

After a week or so off the MLD we were so glad to get back into routine and start doing her rub again – as was she. She actually shouted ‘yay’ when I said it was rub time which makes us so happy. As well as obviously being good for the maintenance of Lucia’s Lymphoedema, it is also a lovely time to spend together as it takes around 45 minutes each time. Sometimes Max also asks for a massage so he gets his own wee version carried out too before bed.

Finally I also managed to get Lucia four pairs of lovely leggings – I know I have mentioned before that it can be quite hard getting her leggings that aren’t too narrow and tight around the ankle but Tesco came up trumps. I might actually go back and buy the next few sizes up!

Today though it’s a onesie day at home playing lots of games, watching movies and finally getting rid of the bug once and for all!

Filed Under: blog

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a little bit about us

Hello and welcome to Little Miss Lucia’s Lymphoedema Life blog! Lucia is my beautiful daughter, born on 12/03/12 with all ten fingers and all ten toes. However, her 10 perfect toes were puffy, as were her feet and legs. After months of tests and hospital appointments she was finally diagnosed with Primary Lymphoedema. Read More

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