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little miss lucia's lymphoedema life

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1, 2, 3 heave!

February 28, 2014 by Jo-Ann Greene 4 Comments

123heave

No doubt those of you who have experience of putting on compression garments will understand the title of this blog post. We got Lucia’s first pair of compression tights and throughout the day we have many of these moments – and she now even says it herself!

Making the decision to begin compression was quite a difficult one as we knew that once we started down that road we were on it for life and that it would be a huge life change – so you can imagine how daunted we felt for our 23 month old daughter.

Why now?

We had been using kinesio tape (bright pink which was pretty cool!) on her right foot where the swelling is the worst and it really helped to soften it up and bring the swelling down a bit – but we knew more needed to be done. We were also aware that her one pair of badly fitting shoes really wouldn’t last much longer and we needed to take that next step that we hoped would bring the swelling down enough to get her a new pair of shoes that fitted properly.

So Lynne – our Lymphoedema Physio – got a rep from the garment company to come and measure Lucia. With a lot of coaxing (and almost a full tube of white chocolate buttons) we managed to keep her relatively still to get the 30 odd measurements done to ensure the garments would fit her well.

We picked the colour cream in the hope they would look like ‘normal’ tights and as Lucia often wears dresses we didn’t want the tights to look noticeably different.

The ‘cream’ tights…

Two weeks later we went to pick the tights up. Feeling a little nervous we met Lynne and opened up the parcel – and my heart sank when I saw they were the most hideous shade of surgical stocking beige. Apparently that was what they called ‘cream’ – colour blind is more like it.

Holding back my emotions, Lynne and I then began the task of getting them onto Lucia.  With shouts of ‘too small!’ from Lucia and a lot of huffing and puffing from us, we eventually got them on. I have never experienced anything like it! They are so tight! There is no stretch in them at all. You can’t put them on like normal tights. They have to go on slowly, little bit by little bit. It is almost impossible to get a grip of the material to pull them up without nipping her skin. And when you are doing all of that with a wriggly toddler who doesn’t know to push her feet and legs in you can imagine how difficult I found that first fitting!

Mixed emotions

Aside from looking completely ugly they fitted well and the material was nice. In a different colour they probably would look fine but all I could see were these disgusting brown tights with seams up the back…I couldn’t possibly let her wear a dress with those. I know that probably sounds completely superficial but I have promised my baby over and over again that we will do whatever we can to ensure she has a normal little girl’s life and these tights would limit an already limited wardrobe so I felt really quite sad.

In these moments Daryn is very good and drawing me back to the bigger picture and I had to remember that the job of the tights was more important that the colour and that through these garments Lucia’s condition would hopefully change for the better. So I tried to embrace them – I really did! Under a pair of stretchy leggings they were fine – but they were a no go with a dress.

Thankfully though Lynne came to the rescue and was able to order us a second pair – in white. And I sincerely hope white is white this time!

Part of everyday life

Lucia has now been wearing the tights everyday for about three weeks. We started off with two hours a day and have built it up to seven hours. Daryn, my mum (who looks after Lucia when we are at work) and I are all getting the hang of putting them on though some days are more difficult than others depending on whether Lucia wants them on or not. All three of us need to sit down for a minute after we get them on to wipe the sweat from our brow and get our breath back! We then need to pull them up every half an hour when they start to creep down – and pulling up is almost as hard as putting them on!

Results

So far the results have been mostly good. When they come off her right leg looks AMAZING. It is so soft and has a lovely shape to it. It is crazy how excited we got when we could see her little calf defined and even bit of an ankle! Her foot too is mostly feeling softer and slightly flatter.

Yes the fluid does build back up again by the morning but to know that we can get it moving enough to make such a difference during the day is fantastic. Hopefully over time it won’t build up again so quickly and it will help her feel a little relief from the pressure she must feel which is most important.

Two important lessons

So in our short time with compression tights I have learned a lot of things but the two most important are these:

1. Remember to pull them up regularly from the ankles as they fall down and can mark the skin deeply at the ankles and knees. They marked Lucia’s ankles so much one day that they almost acted as a tourniquet and the fluid in her foot was very hard as it had been stopped from moving up her leg.

2. Compression tights also compress poo. So before doing a 1,2, 3 heave ALWAYS check the nappy. On one occasion I pulled the tights up as normal and then got a seriously unpleasant whiff of poo! Which the tights had compressed. All the way up her back. Round under her armpits. And even down her arms.  Lesson well and truly noted! Plus it is essential toddlers have at least two pairs of compression tights for accidents like this!

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Comments

  1. Niv says

    March 14, 2014 at 1:51 pm

    Did I mention we go through similar things 🙂
    As for lesson number 1 – there is a special type of glue that keeps the compression garments below the knee or at the heap. We use one by Juzo. I believe your PT can tell you more about it.

    Reply
    • Jo-Ann Greene says

      March 14, 2014 at 4:50 pm

      It is a good work out getting these tights on! And thanks so much for the tip on the special glue. I have already mentioned it our physio! Keep in touch.

      Reply
  2. Helen says

    March 15, 2014 at 12:09 am

    I do not know who decides on the colour of compression tights and why they have to be that horrible beige colour!! I find rubber gloves and talcum power help get my tights and stockings on !!

    Reply
    • Jo-Ann Greene says

      March 15, 2014 at 8:48 am

      They certainly aren’t the prettiest though weirdly they don’t seem just as bad now – must be getting used to them! Plus we have found out we can get most colours now so pink will be next! And yes, talc is great!

      Reply

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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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