Archives for May 2014

Girls love shoes – fact! And Lucia is no different. If I come down stairs in a pair of shoes she hasn’t seen before she always says ‘lovely shoes mummy!’ and she is often (along with Max!) clip clopping around the living room in a pair of my heels shouting ‘look at me!’

I sometimes feel a little bit sad to think that as she gets older – and particularly into her teens – that she might not be able to wear any of the nice shoes she wants to wear, the shoes that her friends are all wearing. I know some people might read that last sentence and think it sounds superficial, but shoes are something that are completely taken for granted and until you struggle trying to find even one pair to fit your daughter you realise how the little things suddenly become the big things.

But then it makes me feel even more determined to try and ensure that in 10 years time she will be able to do and wear everything that other girls her age are. I really hope that by then the wonderful research and trials that are currently ongoing will be able to make a difference to Lucia’s future.

Anyway…as you know from previous posts the combination of lymphatic drainage massage, compression, exercise and skincare has improved Lucia’s Lymphoedema so much and her legs and feet are looking fantastic. So I thought let’s go shoe shopping – there is bound to be something else we can get her gorgeous right foot squeezed into now because it is looking and feeling so good.

Shoe shopping trip

So we went for a girls shopping trip – and I was genuinely surprised to discover that she still can’t fit into 99.9% of shoes. And we tried on LOADS. In all different shapes and styles, but the shoes just weren’t deep enough or wide enough. And there are some seriously pretty little shoes out there for summer.

However, we didn’t let it get to us (or rather I tried not to let it get to me) as we have been in this position so many times. A few deep breaths and I was fine. And then Lucia actually found a pair herself! A pair of pale pink ‘croc’ style shoes in the shape of little pussycats from Next.

To be honest, they are a little bit of a squeeze on her right foot but as soon as they were on there was no getting them off her as she ran around showing everyone in the shop her new shoes and miaowing like a cat!

So they were bought! I know they aren’t very practical but they will be perfect for wearing around the house and for taking on holidays with us. And when we do find a pair of shoes that fit it is impossible to not buy them!

A lovely mum who has a daughter with Lymphoedema in her lower limbs and feet also recently got in touch to recommended Lellie Kellys California range to us, so that will be our next stop. Fingers crossed.

But as you can see from the photo we are thrilled to have what we have as at one point I thought we would never get something to fit her. She has a little pair of slippers, her converse, her first little pair of butterfly shoes and now her pussycat crocs. So to me that’s not a bad little collection for a 2 year old ☺

Compression. This word used to fill me with dread. I had visions of thick, brown, ribbed surgical type tights. In my head they were ugly and uncomfortable and my beautiful little girl who loves to wear pretty dresses and dance around the house would have to struggle to wear these everyday for the rest of her life.

I imagined her wearing heavy, brown tights that would be so uncomfortable and tight that she wouldn’t want to wear them. I worried that they would make people stare at her and ask what was ‘wrong’ with her. I worried how they would make her stand out in all the wrong ways, making people notice her Lymphoedema before they would notice her – everything that we have been striving to avoid.

So, we put it off as long as we could. Until Lynne, our Lymphoedema Physio, suggested that it may be time to start. That was in January 2014 – and we haven’t looked back. As I have posted before, the compression has done an amazing job so far with her legs and feet and I thought it might be helpful to talk about the brand we use.

Jobskin

Lucia’s compression tights are made by a fantastic company called Jobskin. They have offices based in Ireland and England and we have been thrilled with both the products and the service that we have received from them.

Lucia’s compression tights couldn’t be any further from what I had been imagining. Here is the science bit: She wears Premium Lymphoedema Gradient Pressure Garments made from a material called Powernet. In my words – and as you can see from the photo on this post – they are made from a lovely thin material, they look like normal tights and are also fine enough to wear under a pair of leggings. They do have a thin flat seam up the back of her legs but it looks perfectly fine.

The first time we got Lucia measured for the tights, a lovely lady from the Jobskin Ireland office travelled for five hours to see us and measure her. She was like the baby whisperer and Lucia sat like angel and all measurements were taken within half an hour!

She was also able to advise us to add an extra reinforced layer into the top of the right foot of her tights to help give this stubborn fluid a bit more of a helping hand to move up her leg.

We also got silicone spots put onto the soles of her tights so she has a good grip when running with no shoes on in the house – a bit like slipper socks have.

Cool and comfortable

As with all compression garments they take a bit of heaving to get on, but when they are on she is totally comfortable in them and can tolerate them all day with no problem.

When they come off at the end of the day – bearing in mind she spends most of the day running about – her legs and feet are nice and cool and her skin in great condition. We love to look at her bare legs in the evening to see how well the compression is working!

Colours

Lucia is currently wearing white tights, which look great with all her little dresses. The only thing we were a little disappointed with was the colour of the first pair of tights we received. We ordered cream, but the cream turned out to be more of a beigy brown and that did make my heart sink. Thankfully though we also got two pairs of white tights so that softened the blow and the beigy/brown are fine under a pair of leggings.

Their colour range though is great – as well as the white and ‘cream’ that we have there is also pink, purple, red, royal blue, black, bronze and camouflage in the range we use. Next on our list will be pink of course and when she gets to school age we will be able to get red tights to match with her uniform!

Alterations and repairs

The other great thing about Jobskin is they can carry out alterations if they are needed within the first four weeks of receiving your garments. Lucia was measured so well that we didn’t need any alterations, however after a few months a hole appeared on the seam at her heel.

Lynne sent them back to Jobskin to see if they could be repaired and a couple of weeks later we received a brand new pair instead! Fantastic customer service.

Part of Life

So compression is now part of our everyday life – after Lucia’s morning rub and moisturising routine, the tights go on. And thankfully it isn’t as bad as we thought it would be. We do have mornings where she puts up a bit of a fight getting them on, but that is just normal toddler behaviour!

Our next issues will be how she copes in the heat wearing the tights and what happens when we start potty training as the tights just won’t be conducive to teaching a two year old how to use the toilet! No doubt between us, Lynne and Jobskin we will work it out!

For more information on Jobskin check out www.jobskin.co.uk or search for them on facebook and twitter.

 

Over the last few weeks Lucia has had wrinkly knees and ankles and a baggy bum. Or rather, her tights have been wrinkly!  All of a sudden her compression tights seemed to lose some of their tightness which I know is normal when they have had daily wear for a couple of months. On the plus side they have been much easier to get on in the mornings but on the down side it means they aren’t doing the job they should be doing just as well.

So off we went to see our Lymphoedema Physio to get measured for some new garments. And we left on cloud nine! First of all, Lucia sat like a little angel getting 15 dots marked on specific points on her legs and feet and then being measured around them. She is so comfortable in Lynne’s office now and just makes herself at home which we love as she is happy during this important part of her life.

And secondly…her measurements have mostly all reduced since we started compression in January. Some of them by up to 3cm! We knew to look at her that her feet and legs were looking great and feeling great, but to see in black and white just what the reduction has been is amazing!

We are so proud of Lucia for helping us to manage her condition so well. Children are so resilient and it is easy for adults to underestimate how they may be able to cope in any given situation but Lucia just takes life with Lymphoedema in her stride and it doesn’t hold her back one bit. By allowing us to carry out her ‘rub’ and wearing her compression everyday she is helping us to ensure that we are doing everything we can to keep her Lymphoedema in the good condition it is in and slowing any progression.

So this time we have ordered more closed toe tights as they have been working so well and a pair of closed toe knee high compression socks for the summer. The socks will be trial and error though as we don’t know if they will be suitable for her. The problem with her lymphatic system may be in her thighs, in which case the socks will not be of any use, but we won’t be able to see where her specific problem is until she gets the Lymphoscintigraphy dye test – and that is years away yet.

So we will try the socks so she can have a little bit of a breather from tights on warm days and keep a close eye that it is not to the detriment of her thighs.

All in all, it has been another great week with the reduction in Lucia’s legs and feet and with Max who won Player of the Week in his Football Coaching! And it is a bank holiday weekend. Life is good.