How is it mid-September already and how are we slap, bang, right back into routine again? School started a few weeks ago and that wheel has already started turning with homework, after school clubs, ballet, football, swimming and everything else that happens on a daily basis. Some days there really just isn’t enough hours.

Following my last post about Lucia getting measured up for new garments after the bandaging, I was messaged a few times on what compression Lucia wears. So I thought a quick post would be helpful.

Lucia has been wearing Juzo Expert garments now for just over a year – and they are brilliant. They do a great job and, most importantly, Lucia is comfortable in them.

Juzo fits

What we love with these garments is that they fit! That may sound simple but those of you with Lymphoedema will know that this is often not simple at all. We have had garments from a different supplier in the past that had to get sent back constantly to be adjusted or re-made completely – even though they receive up to 40 different measurements from Lucia’s toes to her waist so they can make them specifically for her. At one point last year Lucia was in garments that were nine months old because they just couldn’t get it right – and you can imagine how much she had grown in that time period. In the end we just gave up and that’s when we found Juzo.

I’ll say it again – they fit. When you go through the process of getting measured and you wait for a few weeks to get your new garments because you are in desperate need of them, you just want them to fit! And (apart from one occasion) Juzo has come up trumps every time.

As well as fitting, they do an amazing job with her swelling, they are soft, Lucia finds them comfortable, they look great with her little dresses and – most importantly when you are five years old – they come in different colours!

Colours, colours, lots of colours

First and foremost Lucia wears ‘Happy Red’ five days a week as part of her school uniform. When she first set eyes on them her wee face just lit up with joy – ‘I don’t like them mummy, I love them!’ They are a wonderful shade that matches her uniform perfectly and look just like ‘regular’ tights. The only thing I am worried about here is that they are classed as a ‘Trend Colour’ so come March this colour will be no longer available. We hope that they will still have some shade of red that will suit (last year she wore Cosmic Coral so fingers crossed.) Or, Juzo , if you are reading this can you help us out on this?!

We also love ‘Sugar’ which is an off white shade – great for ballet class and under dresses and skirts. But her most favourite of all the colours is ‘Very Berry’. They have no pink at present in their colours (hi again Juzo! Preferably a pastel type pink!) but the next best thing is purple. She actually shrieked as if it was Christmas when she received the purple shade and wanted to wear them everyday with pride. Such a simple thing that brings so much happiness to a little girl.

Style

I’m not sure if this is classed as style but Lucia wears full tights but with an open toe on the right and toe caps over the top. (I have a more detailed post on this combo and how it came about here.)They stay up really well, they wash well, dry quickly (overnight if you use the washing machine), are great quality and we know we can depend on them. And most importantly they are doing a great job. The difference in her foot and toes in particular each evening is amazing and her leg gets some wonderful results as well. Some days are better than others depending on what she has been doing or just how her system is working on any given day – but overall these garments work well.

We are so so pleased to have these garments in our lives as we know we can depend on them – and considering compression is one of the most vital components in the daily treatment of Lymphoedema this helps to take a bit of the weight off our shoulders, knowing she is comfortable and happy.

So it seems that gremlins managed to get into my blog and those of you who kindly subscribe to it won’t have received notification of my last four posts!

However, my IT guru has been on the case (thanks Andrew!) and has sorted the problem for me – so I have linked all four posts below.

The last month has been a busy one and includes a few changes and new experiences for us that may be of interest to you – including a look at how we all coped with Lucia’s first year at school, new compression details and bandaging trials.

I hope you can find a few minutes to catch up on where we are and as always I love to read any comments of similar experiences or if anyone has any advice or tips please do get in touch. These can be invaluable as everyday truly is a learning day with this condition.

Open toes, closed toes, toe gloves…garment update
Click on the link above to read about a new combination of compression that Lucia now wears and how it is working for her.

School’s out for summer!
Click the link above and read about school finishing up for summer and looking back at how well Lucia managed throughout her first year at primary school. (Amazingly!).

The next two posts focus on the new bandaging treatment we tried out a couple of weeks ago.

Bandaging feels ‘a wee bit weird’ (Part 1)
Part one is all about deciding to take this step, talking and compromising with Lucia and actually getting it on.

Bandaging – the results (Part 2)
Part two is how Lucia managed the bandaging, the results and future plans.

Thanks for reading!

I had planned to write this post over the weekend when we got Lucia’s bandages off, but we had some gorgeous weather and made the most of that instead!

My last post focussed on Lucia getting the bandages on and how she managed (amazingly!) – if you want a wee read click here. This post is about the results and future plans.

So – Lucia managed to keep the bandaging on for a full 24 hours which was brilliant for her first time. She slept all night in them and the only issue she had was not being able to get her ‘snuggly suit’ (fleecy onesie) on in the morning because her ‘pass the parcel’ was too big. (She nicknamed her bandages pass the parcel because it had so many layers like the party game!)

We headed in to see Lynne that morning and she was delighted that Lucia had managed so well. She told her she was so proud of her and had done brilliantly which made Lucia feel very proud of herself. (This woman is so special).

She then cut the bandages off to see if they had reduced her swelling. I should say here that Lynne didn’t put them on as tightly as she could have – this was more just to give Lucia a feel for them and to see how she would react. So bearing this in mind we were still amazed at the results.

Her leg looked and felt so different! The bandaging had visibly moved so much of the fluid from the outside of her leg and her ankle had the most beautiful little shape to it. And as for her foot – I could feel all of the bones on the top of her foot and her little toes were so long.

Normally when we take off Lucia’s compression at night – and particularly after she has worn her toe caps and shoes – we can feel one of the bones on the top of her foot. This time though it felt so strange to be able to feel the solidness of her whole foot if that makes sense? Hard to describe! Lynne said it was because there was more ‘depth’ to the swelling reduction rather than the superficial reduction of compression garments on a day-to-day basis.

And this ‘depth’ of reduction applied to her whole lower leg and foot. You can see in the before and after photos what I mean.

We were definitely impressed by this and excited to see how tighter bandaging put on for a longer period might go. So much so that we have planned it in for August time.

By the evening though we could see the fluid starting to gather again – you can see this in the picture below which shows the results just after bandaging (left photo) and then her limb in the evening of that day (right photo). You can still see the difference in comparison to the original ‘before’ photo but it just goes to show how quickly that fluid starts to return.

It also just reminds us that we still really don’t know what we are dealing with when it comes to Lucia’s lymphatics – where the issue is, what the issue is – is it a node problem? A structural problem? Both? And until she is a little older we won’t be able to find this out as she has to be around eight years old before any type of lymphoscintigraphy test can be carried out. However, there has been significant movement on the genetics front which I will post on soon.

Anyway, we were definitely happy with this first little venture into bandaging, how Lucia coped with it all like a little star, the results that came from it and the plans we have now put in place to try it again in a few weeks’ time. Watch this space.

Just a short post this evening to update on a new treatment we are trying for Lucia – new for her but not new for any other lymphies who may be reading this. We were up bright and early to meet Lucia’s therapist, Lynne, in the hope that Lucia would allow her to do some bandaging of her right leg and foot to see how that would impact on her swelling.

We had put this into the diary a few months ago when her swelling was particularly bad, but until she was off school on her summer holidays there wasn’t an opportunity or time to try it out. We talked through all of this with Lynne and at the time I remembering feeling so anxious about it all. From the outside looking in putting some bandages on may not seem like a lot – but to us it was another huge step in Lucia’s lymphoedema management.

A new step

It’s a much more intensive treatment that should ideally be used for weeks at a time to see any real results – but this first time was to be more of a ‘taster’ for Lucia…to see if she would allow it, to see if she could tolerate it, to see if she was sore, uncomfortable or found it unbearable to wear. Or on the flip side to see if she was comfortable and if she could bear to wear it for even a short period of time.

Just thinking about all of this really made me stress – it’s almost like once you start something with this condition you can’t stop it. Once we started the massage it was everyday, when she started wearing the compression it was everyday, the machine is used on a five times a week basis not to mention all the other daily ins and outs…so if we started bandaging how often would this have to be added into her care routine on top of everything else?

Talking and compromising

We spent the last week talking to Lucia about it, trying to prepare her for it and for the first little while she was adamant that this wasn’t going to happen. She gave us a firm NO. (Strong little personality right there!). But every now and again we would mention it to keep trying to plant the seed, though at a couple of points she got very teary because she was scared and nervous of something new. Completely understandable.

In the end we said we would just go and see Lynne, she could feel the bandages and the foam and if she didn’t want them on that was fine. This is not something we wanted to push on her as further down the line it may be something she really needs, so we didn’t want to risk a bad first experience. However, we did also throw in the idea of a hot chocolate and a new toy if she did allow Lynne to put them on – even just for a little while…which swayed things a little bit!

And, of course, she was an absolute star. As was Lynne. She showed Lucia the foam and the bandages, explained how she would put them on, let her have a good feel of everything and a bit of a play with them, assured her they wouldn’t hurt, nothing would stick to her skin and if she really didn’t like it then she would take it off right away.

Let’s do this!

Then she was ready to give it a go. She chatted and laughed as the process started and loved the little ‘pillows’ of foam that went between her toes to keep them comfy. As the layers went on she said it felt weird but ok and when Lynne got to her knee she said that was enough. Ideally we had hoped to do thigh high but for a first go to the knee was amazing. She kept saying it felt weird as Lynne was putting the foam and bandages on, but by the end she seemed comfortable and although still ‘weird’ she said it also felt ‘great’.

We decided to take it hour by hour and Lynne sent me home with special scissors in case she needed them cut off at home. The goal was to keep them on for 24 hours and take her back to Lynne in the morning so she could cut them off and see how her swelling had reacted.

Right now she is sound asleep in bed after a big day. These things always take quite a lot out of her and it’s easy to forget what is going on underneath the bandages. That it is squeezing her leg and foot tightly to move the lymph and that her body and organs are then having to cope with this extra fluid being pushed around her body. Exhausting.

Superstar

As always, she has completely amazed us in how she takes everything in her stride. Although she couldn’t wear a shoe over the bandaging she has still wandered around the house as normal and when we went out for family tea she happily walked around the restaurant too!

We are so so proud of how she has handled today and have our fingers crossed for a peaceful nights sleep. I’ll update at the weekend.

(And apologies, this short post ended up quite long in the end!)

Last week saw the end of school for another year with Max finishing Primary 4 and Lucia completing her Primary 1 year. And what a year it has turned out to be. School reports came home and made us beam with pride at how kind and helpful they had been, how hard they had worked, their fantastic achievements and, most importantly, how much they had enjoyed the school year.

The school they attend is simply fantastic. Their teachers and classroom assistants have cared for them so much through the tough times (including broken bones/extra lymphoedema swelling/falls) as well as teaching them all that they needed to know throughout the year.

They went to school happily most days (sometimes after being asked to brush their teeth/put their coats on 20 times!) and have really grown in confidence, ability and knowledge since September. They both make us burst with pride on a daily basis at the incredible little people they are becoming. We simply could not ask for more and truly have the two best children in the world! (Disclaimer: slight bias).

This was Lucia’s second year at this school – she spent an amazing first year in the nursery department which she loved and gave us a first taste of someone else looking after her needs. However, this year was her first ‘proper’ school year and anyone who follows the blog will know how nervous we were at the start.

However, she has had an outstanding year which has seen her learn to read and write, do addition and subtraction, made close friendships, took part in physical education, outside play, attended a school trip and took part in sports day – just like all the others in her class.

Not only did she take part but she also brought home prizes! She was presented with the prestigious P1 Literacy Award at the school awards assembly and won the bronze medal in one of her running races on Sports Day. Watching her racing with a big smile on her face and crossing the finish line in third place was just amazing!

The talent show

She also came third in the school Talent Show when she performed a little ballet routine to lullaby music (made up by me!) in front of over 400 children and teachers – this makes my heart want to burst! Knowing she has this amazing confidence to want to get up there and perform – and then actually doing it – makes me fill up just thinking about it. And, most importantly, she loved every minute. On the morning of the show she said the ‘butterflies are flapping in my belly but I am mostly excited!’. The butterflies felt like they were whipping up a tornado in my tummy that morning too! But off she went, eager to get on stage and show her moves!

She came out of school on cloud 999 never mind cloud 9, beaming from ear to ear saying over and over, ‘I just can’t believe it!’. I think this may have been the happiest moment of her little life so far and to see her feeling truly ecstatic and so proud of herself was an incredibly special moment. And Max was almost as excited as Lucia! He watched her perform and came running out of school saying she was brilliant, remembered the whole routine (he knew every step too!) and his smile of pride for his little sister was almost as big as Lucia’s!

‘I can do anything I want’

Lucia has achieved all of this in spite of her lymphoedema. Although her condition plays on my mind pretty much all of the time it doesn’t feature as a ‘big thing’ in her little life – which is exactly what we have been aiming for. She will say at times, ‘I have lymphoedema but I can do anything I want’ – and guess what? She can and she does. And not once has she ever thought she can’t. And this makes us immensely proud and incredibly emotional. (I am aware I am completely overusing the word proud in this post!).

Reassurance

We are also so thankful that Lucia has a wonderful assistant at school who has been there everyday to ensure all her additional needs are met. She pulls up her compression garments every half an hour and ensures they, along with her toe caps, are worn appropriately and comfortably, helps her get her shoes on and off, assists her at toilet visits, watches her in the playground for any trips or falls and treats any cuts and scrapes with impeccable care. She also supervises her at steps and stairs as Lucia is still wary of these and can tend to trip, as well as keeping her legs comfortably elevated under her desk. She is the most caring person who treats Lucia with such kindness that enables us to feel reassured when she is at school.

What we have learned this year

We have also learned a lot this year about how Lucia’s condition can fluctuate. She does go through periods where her swelling can be worse and during the school year she had a particularly bad ‘flare up’. You can read about this here. When this happened we were able to put extra measures in place during school to try and help this extra fluid build up – that was to always have her legs elevated when she was sat at her desk.

We always knew Lucia tended to tire more quickly than her friends and we could definitely see this during the school year. So we have had to carefully manage her fatigue levels by making sure she has proper rest time and elevation after school, only took on one activity outside of school – one hour of ballet on a Saturday morning – and gave her plenty of time to rest at the weekends in time for Monday morning.

She definitely seemed to pick up every illness going – it was just one thing after another – and even when she had eventually got over each thing she still always seemed to have a lingering cough or sniffly nose. Even now, with school finished she is currently fighting a virus of some sort!

Summer has arrived

But the main thing this year was how much Lucia enjoyed her school year, how well she was looked after and everything she has learned. Having her big brother there looking out for her is also a lovely thing and he would always give her a little high five if they passed in the corridor! Now Summer is here and with weeks stretching out in front of us we can’t wait to have some holiday fun together as a family. Bring it on!

Last night I thought my heart was going to burst with pride. The dance school that Lucia attends was holding its Annual Show and her class – the babies class – was doing a little part to show all the parents, grandparents and aunts and uncles some of the ballet moves they have been learning over the last year.

Lucia had been so so excited all week and counting down the sleeps until the show, so come Thursday she was beside herself! After an early tea (that was eaten by both Max and Lucia in record time!) we started to get her dressed into her ballet clothes for the show – a purple leotard, purple skirt and ballet shoes with a pair of peach socks.

Socks dilemma

As you can imagine the whole socks issue had been playing on my mind a bit as Lucia always wears her compression garments to ballet. Her lovely teacher had suggested she wore her skin coloured tights with the socks over the top, but this wouldn’t have worked because we would never have been able to get her ballet shoes on. So we decided to let her just wear the socks. It was an evening performance, she had worn her garments all day, it was only for a short period of time and Lucia wanted to be just the same as all her fellow ballerinas.

When we told her she could wear the socks without her tights she actually squealed with delight. She ran up and down the house shouting ‘no tights no tights’ and told me I was the best mummy in the world as she squeezed me in a huge hug. And when I got her all dressed she actually said, ‘it’s so lovely to have my legs out!’ as she twirled and skipped about. It is little moments like this that make my heart happy and sad at the same time – how something so completely normal and insignificant to anyone else can mean absolutely everything to our little girl.

I then got the all important hair sorted with a ton of mousse, clips and hairspray and we were good to go!

The show

The show was being held in the local Town Hall and when we arrived Lucia was so excited to see the stage and couldn’t wait to get on and do her bit! But she had to wait! We watched lots of the older dancers doing their pieces first and Lucia couldn’t take her eyes off them – but between each act kept asking is it my turn now, how much longer, how many more…until finally, it was the babies turn.

Watching her run onto that stage on her tip toes with a beaming smile on her face had me fit to burst with pride and tears! Our girl was so happy. When I think back to all of the uncertainty when she was a baby – not knowing if she would be able to walk never mind run or dance – and now we were watching her dancing on a stage!

She pointed her toes, she jumped, she plied, she skipped and was the most beautiful, joyful ballerina ever. And we were all the proudest mummy, daddy, brother, grandparents, aunt and uncle ever! When she came off stage we couldn’t wait to cuddle her and Max said she was the best ballerina he had ever seen (best big brother ever!).

Exhaustion and recovery

After it was all over and the adrenalin wore off she was completely exhausted and was asleep in seconds when we got home. This morning she was still extremely tired – but thankfully it’s Friday so she only had one day of school to go and she couldn’t wait to tell her teachers all about her night!

When I collected her from school her assistant told me that Lucia had been too tired to do PE so she just sat and watched her class as they practised for Sports Day. Although she was only on stage for about 10 minutes, the whole experience clearly took a lot out of her and it is wonderful that the school take on board how she is feeling.

Now for a quiet few days to help her recover, though we have a very important football match to watch first starring Max – super proud mummy alert once again!

The Easter holidays are almost over and school and work is once again on the horizon – and I think we are all dreading it! Having real time off together with no routines to stick to, nowhere to be at certain time and the luxury of lying about the house all day in our pyjamas if we want to is pure bliss.

The last few months have been pretty full on in our house and if I’m honest a bit overwhelming at times too. Max broke two bones in his arm at the start of March requiring surgery to straighten them out, followed by five weeks in a full arm cast. We moved his bed into our room so we could tend to his needs during the night and it felt a bit like having a newborn again – that worry, anxiety, fear and exhaustion coming at you like an avalanche. And because Max had a really bad leg break less than two years ago I think this time round felt even tougher. Because it wasn’t fair on him. He had already had to deal with broken bones at just six years old and now he’s having to do it again.

But, as always, he manages better than me, never moans, never complains and just carries on like the little hero he is. The cast came off last week and my nerves are now worse than ever as for the next six weeks he isn’t allowed to do anything that may cause him to fall in case he breaks the bones again. Actually, frazzled is probably the best way to describe myself right now!

Lymphie lows

At the same time, Lucia’s Lymphoedema hasn’t been good either. Ironically after I wrote a post on how good things had been. Her swelling was probably the worst I had ever seen. Her little right leg was thicker than ever and felt so hard to the touch. The inside of her leg which usually isn’t too bad was full of fluid – I could barely feel her shin bone. Her ankle had a constant gathering of fluid, no ankle bones could be felt at all and her foot was so swollen on top it looked like it could explode at times. Not to mention her little puffy toes. The swelling was so bad we were struggling to get her trusty Converse shoes on and they were leaving a massive mark around her ankle.

We were using the Physiotouch machine more often and for longer periods to try and shift some of the fluid and it did help to soften things up, but it wasn’t making the same impact as it usually would. Then, within an hour or so it was as if we hadn’t carried out the treatment at all, as the fluid seemed to just pool back in again. But, just like her big brother, she took all in her stride (as per photo below!) while we tried to think of possible solutions.

We started elevating her legs more when she got home from school and at weekends, but it is pretty hard to get a five year old to sit in the one place for an extended period of time. She would start off with her legs raised on cushions but within 10 minutes they would be curled underneath her or crossed over, so we would try and encourage her to keep them nice and straight and in an upright position.

We also started doing more manual massage as well to try and get things moving and to try and get rid of this ‘hardness’ that seemed to be there all the time. (Hardness is not good as it is a sign of stagnant fluid.) We also noticed some change in the colour of her skin as well and quite often her right foot would look mottled as if the circulation wasn’t working right.

Add to this that Lucia was extremely fatigued in the last few weeks of the school term, that she would say her legs were feeling tired and complain of little aches and pains in various areas of her limbs, meant that she was also feeling this difference too.

What was going on?

Now, this does happen from time to time. Though not this bad. Her swelling does fluctuate without any rhyme or reason but usually within a week or two it settles and goes back to what we know as her ‘normal’. But this time it didn’t. Weeks passed and nothing changed. Weeks turned into a month and time kept passing.

When she got up each morning her leg and foot didn’t look rested – it looked like she’d been on her feet all night. And when you lay her down and lifted her legs you could physically feel how much heavier her right felt in comparison to her left.

Lucia’s assistant in school, who ensures her compression garments are worn correctly and comfortably, also noticed her swelling was worse. My mum could feel how hard it had become and how thick her ankle was. When we put on her toe caps (compression for her toes and the top of her foot) it started to act as a tourniquet and pushed fluid into her ankle, whereas before they made a huge positive difference to the swelling in her toes and foot.

So with all of this going on and Max’s broken arm thrown in, things were (and still are) pretty exhausting. And because Lymphoedema is a progressive condition my head was thinking is this what’s happening? Is it starting to progress? We are doing everything we can everyday but nothing seems to be making a difference. Is there anything else we should be doing? Why is this happening? What is the reasoning? What is different?

Elevation and rest

But we didn’t know. The week before the Easter holidays we started getting Lucia’s assistant to elevate her legs when she was in school to see if that made any difference. Sitting on a chair for a large part of the day is not good for anyone with Lymphoedema in their lower limbs. Gravity is the enemy and sitting with a bend in your leg traps the fluid in the lower leg, giving it nowhere to move to. Lucia would also spend time with her classmates sitting cross legged on the floor – again not a good position. The rest of the time she is on her feet in the classroom or in the playground. And this is for 5 hours each day.

So the elevation in class took place for a week and honestly, by the end of that week, we think we could see a difference. Then school finished for Easter and within about 6 days of being at home her swelling had settled back to what we would call her normal range. It was astounding. All of a sudden she was getting up in the morning and her leg looked good, it looked rested, she had a little bit of shape back to her ankle, her bones were visible, her foot (although still swollen) didn’t look like it could burst.

By the end of the day, although fluid had gathered it was ‘normal’ for her. She could wear her toe caps again and they did their job rather than causing a problem. We have been continuing with extra Physiotouch sessions and extra elevation throughout the Easter holidays and her little leg is looking so much better and feels lighter too. We made sure not to overexert her (or Max!) and if we were out one day we stayed at home the next day to let them recover. Rest time for Lucia is crucial to helping her condition.

Answers?

So all those questions in my head did have some answers. There was a link. We think that having been a school for a solid six months we are only now seeing the impact that it has had on Lucia’s Lymphoedema. That five hours on her feet/sitting at a desk/sitting on the floor/running around/standing about has started to show in her little leg and foot. So we now need to think what can we do to help minimise this impact as much as we can.

We have already started with the elevation when she sits at her desk. We got her a lovely soft cushion which sits on a chair under her table and she rests her legs on it. We may need to think about not letting her sit on the floor cross legged. Should she stay in a few lunch times a week and put her feet up? But at the same time we also don’t want to make her feel different to everyone else in her class. We want her to feel just like everyone else and to be able to do the same things as her friends – and it is so hard to find that balance.

Advice welcomed

Anyone with any experience please let me know your thoughts. Are there any other measures we can put in place to help with this? Or are we missing something really obvious?

We are incredibly lucky that her school is just wonderful and anything we need they back us up completely. She also has the most amazing assistant who helps her out everyday and who she absolutely adores and this gives us peace of mind that she is well looked after.

As always we have also chatted things over with Lucia’s therapist and spent hours with her thinking about next steps and a change of garment type amongst other things. Lynne is always there to listen and to help and we are once again so fortunate to have her. I’ll write about the things we discussed in another post as this one has been quite long enough.

So, come Monday we’ll have a chat with the school and see what we can do. I feel relieved knowing that we think we have found a reasoning for her extra swelling but equally apprehensive about what will happen when she goes back. Add to that the apprehension of Max going back with his still healing arm and I think Monday may be a long day full of shredded nerves.

A very happy 5th birthday to our gorgeous little lady – and I’m sorry this post is exactly one week late! I always put up a happy birthday post for Lucia, but this year, life kind of got in the way. A few days before her birthday our poor Max broke two bones in his arm and had to have surgery to get them straightened out. Thankfully he is now doing really well.

We also still managed to have a birthday weekend for Lucia and she had the best time at her three parties! A princess one with a few of her little friends and two family birthday parties. For weeks she had been so looking forward to being a big 5…and now she is.

So, although it’s a week late – happy birthday to our beautiful girl. You make our hearts sing.