Last Saturday was an amazing day. Lucia and her dance troupe took part in another festival (click here for details on the last one) and she was so excited! She woke early (especially for a Saturday) and just couldn’t wait to get to the venue, to see her friends, get her costume on and to dance on stage. Now that she had experienced it once before and knew what to expect she was raring to go – this time with absolutely no nerves at all!

She danced beautifully along with the rest of the group, full of confidence, smiles and grace – and they won! As you can imagine we were all beaming seeing her up there on stage, playing her part and doing her thing – just like all the other girls – and, most importantly, absolutely loving it. The gold medal was the icing on the cake!

As mentioned in the last post, we allow Lucia to do the routine in her bare legs (without compression) as it is only for a short period. She does however wear her ballet shoes to protect her feet while all the other girls are in bare feet.

But Saturday taught me a very valuable lesson. I think I took my eye off the ‘Lymphoedema ball’ and Lucia paid for it on Sunday.

Details about the day

The show was at 2pm. We arrived at noon as the teacher wanted to do a few practice runs on the stage with the group as they are all aged seven and under (babies!). I kept Lucia’s compression garments on for the practice and then everyone started to get ready. The changing area in this particular venue was tiny – and when you had over 20 girls and their mums all trying to get changed, make up sorted and bags sitting everywhere, there wasn’t even elbow room.

I managed to find a chair and a little bit of space for a few minutes to get Lucia’s compression tights hauled off her, as unless she is either sitting back or lying down there is no other way I can get them off. I then quickly got her changed into her costume as I didn’t want to be taking up too much room for too long.

In hindsight, I took the garments off too early – they could have stayed on at least another 15 to 20 minutes, but because everyone else was ready I didn’t want to be rushing Lucia at the last minute – plus, anyone with experience of compression garments knows there is absolutely no chance they can be rushed anyway.

I did put her toe caps back on for another 10 minutes or so while we were waiting around, but as it came to 1.30pm some of the girls seemed to be disappearing. Thinking they were heading to the stage area I took off Lucia’s toe caps and popped on her tighter ballet shoe – once again to ensure she was ready along with everyone else. In hindsight, I did this too early as well.

The three ballet shoes

FYI – Lucia has 3 ballet shoes – one for her left foot (size 10) and two for her right foot (size 11). She has two for her right foot because when she is wearing her compression garments and toe caps she needs a shoe with looser elastic to accommodate the compression as well as her swelling. I customised a ballet shoe with new elastic to fit. Then she has a ballet shoe with the normal, unadjusted elastic, just for festival performances, as when she has no compression on the adjusted elastic is too loose. (Hope this makes sense.)

However, the ‘normal’ elastic really is too tight for the swelling on her little foot (we need something in between the two) and on Saturday she had it on for about an hour or slightly more all in. When she had finished dancing and received her medal, I took her ballet shoe off and the swelling on her foot was in the exact shape of the ballet shoe where it had been digging into her. It wasn’t sore thankfully but it looked like it was.

The mistake

And then I made the biggest error of all. We were back in the tiny changing area and getting compression on when I am at home, with plenty of room and lots of time is tough enough never mind in a confined space surrounded by other people.

I had brought a regular pair of tights with me so I put them on under her leggings just to get us out. In my head I had planned to put her compression back on when we got to the car – but I didn’t. I thought, it’ll be ok.

So off we went for a lovely family meal and although it was in the back of my head I didn’t really worry too much. I think we were just too hyped up after the amazing performance and enjoying precious time with family.

We then had cousins coming for a sleep over that night so once again there wasn’t really time to think about it at home. When I took off her regular tights I could see her swelling wasn’t great, but she was having so much fun I just let her be.

Consequnces

Yesterday morning however told a tale. Her little foot was so very swollen and full of fluid. It looked so tight – like it might burst – and had a ‘mottled’ sort of pattern on the top of it. Her ankle was swollen and her leg too, more than normal. So obviously my worries kicked in a little.

A long day with little compression had clearly taken its toll. And then possibly just the events of day including her adrenalin running for the performance, not drinking enough throughout the day, not eating the best and staying up later than normal meant her little body was struggling to cope and she was really very inflamed. Does this sound right? Or am I just making it up to try and explain things?

Recovery

So yesterday was a Netflix day. Lucia pretty much sat on the sofa with her legs elevated all day. I got her garments on early and got her legs up. I did some extra treatment with the Physio Touch machine as well to try and bring the swelling down a bit and made her drink lots of water.

This morning (Monday) her foot and ankle were still not in great shape – though to be honest, over the last few weeks I do believe her swelling has been worse than normal, but I suppose this weekend didn’t help.

Emotions

As you can imagine I have been feeling anxious and annoyed at myself for slipping up a bit – it was a stupid decision and it has been playing on my mind a fair bit. But I am trying not to let my head run away with this too much. Once upon a time I would have really given myself a hard time until I nearly made myself sick, but I am learning to control this a little bit better. Yes, I am really frustrated at myself for not just taking the time to put her garments back on in the first place – it was foolish and I really regret it – but I am trying to see it as a learning moment so I don’t send myself mad. Plus, it was a one-off day. And it was a day when Lucia was ecstatically happy and had the most fun which is hugely important and helps put things in perspective.

I did very quickly put measures into place to try and get things back under control again as well as chatting to Lynne for advice considering her swelling hasn’t been too good lately anyway. I just hope all our usual daily treatments and extra efforts will get us back to a better place with her swelling soon.

Everyday is a school day when it comes to Lymphoedema – and, as always, any advice is welcome.

Lucia is six! That feels strange to even write – I think I am still trying to get my head around how my baby girl is six. But she is. It was her birthday two weeks ago and she had been looking forward to it for so long (months in fact!) and she had a brilliant birthday weekend.

She had a party with her little friends in our local recreation hall where they played games for an hour followed by food and the all important birthday cake! 13 little girls (and big brother Max of course who ended up getting chased by the girls!) made for a fun/manic couple of hours and she had the best time. We also had a a few family parties and more cakes over the weekend, so it is safe to say we were all partied out!

That all happened over a Saturday, Sunday and Monday – but the madness didn’t end here. That Tuesday brought Lucia’s very first dance festival where she would be joining her dance ‘troupe’ to perform a routine choreographed by her amazing dance teacher on stage.

The girl loves to dance!

Anyone who follows the blog will know that Lucia LOVES to dance. She has been attending ballet classes for about 18 months now and last September joined the Troupe class, which is a group of girls under eight years old who learn a routine together. They then dance at three festivals. Her class has about 20 girls in it and the way her teacher manages the class and has taught them a truly beautiful routine is beyond me! The woman has amazing talent and true patience.

You can read more about Lucia’s love of dance in these posts: this one is about her starting ballet and finding the right teacher, this post is about her first show (amazing!) and this one is just last Christmas when my heart nearly burst!

The big day

They have been practicing their routine called Treasure for months – and then suddenly the big day was here! We headed to the Town Hall where it was being held and when we got into the hustle and bustle of the changing room where everyone was getting ready it was really quite nerve wrecking!

We all arrived early so that the group could get a quick practice on stage – and, as you can imagine, this was very different to the hall they practice in. Lucia ended up completely overwhelmed and her little nerves got the better of her for a few minutes – understandably. But we had a good chat about how those feelings were completely normal, got some reassurance from a little friend and then she was raring to go again. I got her changed into her beautiful, fairy-like outfit, finalised her hair and she even had a little bit of makeup applied!

Slight modifications and Lymphoedema management

This dance is very lyrical and is done in bare legs and feet, but throughout all the practices Lucia has always worn her compression tights and ballet shoes.

When it came to the actual performance I agreed to Lucia doing it in bare legs as it is only three minutes long – but the bare feet is a complete no-no. I explained this to her teacher and the reasons why this can pose such a risk to Lucia and she completely understood. She decided to order her some new ballet shoes in a different style to what she usually wears and more skin-toned in colour, but unfortunately when we got them on the day they just didn’t fit.

They were much narrower than her own ballet shoes and had tight criss-cross elastic on the top of them, which squeezed her right foot unbearably. So, her regular shoes were worn (as previously adapted by me to fit) and off she went. (Luckily I had given them a good clean as I know when it comes to shoes that 9.9 times out of 10 they wont fit, so we always need to be prepared).

I also kept her toe caps and converse on until the very last minute before they headed for the stage and put them straight back on after the performance to try and minimise the fluid build up as much as possible and keep that all important compression on.

So she headed onto the stage with the group, danced her little heart out, smiled a big smile – and they came 2nd! She was so proud of herself for doing it and she honestly just loved it. We were so proud of her for conquering those nerves that had her saying ‘I don’t want to do it’ at one point, to then going on full of confidence.

Thankful and proud!

I am so thankful and grateful to have found a ballet teacher who is understanding and allows these little modifications to happen. Who understands Lucia’s physical well-being is of paramount importance and accepts that she has to do things a little differently. And as mentioned before – Lucia’s first love is dancing. At just six years old it is the thing that makes her most happy and when she isn’t in class she is dancing around the living room or just wearing her ballet shoes because she wants to. Her teacher is a huge part of the reason as to why she loves it so much.

So this is just another way that she is showing Lymphoedema who is boss – and not even realising it. She has no concept that this condition could hold her back in anyway – and long may that last! She isn’t letting it dictate who she is. She is doing what she wants to do, the way she wants to do it, and, as always, doing it amazingly.

Roll on the next two performances!

Following on from my last post I just thought I’d do an update on how we got on and what happened. It was long and tiring as well as exciting and interesting and, as expected, our little lady was simply amazing.

But before I start I just wanted to say a big thank you to everyone who took the time to either comment on my last post or to email me to wish Lucia luck and to share your experiences. It means so so much to us to have support and encouragement from you all as we continue to find our way through this condition.

Here we go

We arrived at the hospital about 9am and met up with Lucia’s therapist, Lynne, and headed down to the Radiology Department. We had told Lucia she was going to get special photos taken of the inside of her legs – a bit like an X-ray – but hadn’t mentioned the injections at this point.

The radiologists were brilliant with her. So friendly and kind and chatted to her as well as to us which we appreciated. They explained the procedure to us, including the injections between the toes – and as you can imagine, Lucia’s little smile turned to fear. But they were very quick to reassure her that they would be putting lots of magic numbing cream between her toes as well as some freeze spray so she wouldn’t feel anything.

So on went the magic cream and we went back out to sit in the waiting room for half an hour for it to take effect. She sat up on Daryn’s knee with a little table and we gave her the brand new colouring book and pens we had got especially for the day and she happily coloured in without mentioning the injections at all.

The toughest part

Then we were called into the room where she was to lie down on the bed for the injections. They had a tv all set up and a choice of DVDs – Peppa Pig made the cut so she lay down to watch a few episodes while we got the worst bit of the day over. And she was amazing. She lay like a little darling while I held her hand and chatted to her to try and stop her looking at the needles. She knew they were coming but she lay still and let the radiologists do what they had to do.

This part was tough. One had to hold her toes apart while the other injected the dye. She whimpered and cried a little when it went in on each foot while I held her tight and Daryn tried to distract her. And then it was over.

Amazing inner strength

Lucia has an amazing inner strength. The courage and resilience she showed on this day had our hearts fit to burst. She has such a strong, fighting spirit that she draws on at times like this – and everyday living with Lymphoedema – all without even knowing it. We say so often she takes everything in her stride – but she can only do this because of that strength and the positive attitude she carries within her.

(Max has this too. He has been through 5 broken bones in 2 years and the way he got through each injury was simply incredible too. The bravery, the patience and the resilience he showed and continues to show each day makes us so very proud.)

Walking, running, dancing, scanning and repeat

Once the injections were over we felt like we were flying! We could see two ‘magic sparkles’ on the screen – one on each foot – and we were then sent off to take Lucia for a half an hour wander around the hospital. This was to try and get the dye to travel through her lymphatics before the next scan.

So we walked up and down 110 stairs, danced, skipped and ran up and down quiet corridors, got a bit lost, grabbed a cup of tea and a pain au chocolate before heading back to get scanned.

Lucia was then made comfy on the bed with peppa pig in full view, while the scanner was lowered down until it was merely centimetres away from her body. She had to lie still for about 20 minutes as the bed very slowly inched its way out from beneath the scanner which was taking constant photos of her.

She was as good as gold – had a few wriggles! – but otherwise lay cuddling her little kitty and watching peppa pig. While she was being scanned I almost felt like I was holding my breath waiting to see or hear what was showing up on screen. Turned out, not much was happening. The dye didn’t seem to have moved anywhere on either leg so we were once again sent off to try and get this moving.

Another half an hour of walking, running, dancing, skipping and stair climbing until Lucia’s little legs couldn’t take anymore and she was back up under the scanner. This time the radiologist said they could see the dye had moved up through the lymphatics of her left leg but the right hadn’t budged.

So this time we were sent away for an hour – and you can imagine how tired Lucia was by the end of it. She did about 12,000 steps overall and boy were her legs feeling it.

Back under the scanner for some final photos but again, things on the right still didn’t seem to have moved. However, this was just a ‘first glance’ at the scans by the radiologist. We know that a lot of filtering and interpretation has to be done to read the scans so in a few weeks we hope to have a better idea of what is going on. Obviously we know her right side – which is most affected – isn’t working well but we really hope that these results will maybe give us a bit more info on why.

And then it was over…

We left the hospital after 2pm and Lucia requested a stop off at a coffee shop for a special hot chocolate and a croissant – which we were more than happy to do! We then headed home to get her some rest and a lovely bubble bath to ensure the injection sites on her toes were nice and clean. I also put some savlon antiseptic cream on too as a precaution, but thankfully there has been no redness or issues.

She was asleep by 7pm and slept a full 12 hours that night. (I wasn’t too far behind her since I had very little sleep the two nights beforehand.) Her school and teacher were fantastic as always and suggested I lift her early from school for the rest of the week to let her fully recover and get over her big day.

So now we wait and hope that in a few weeks we might have a little bit more of an insight into this condition and exactly how it affects Lucia – so watch this space.

So tomorrow is a very exciting/nerve-wrecking day for us. Lucia is getting a Lymphoscintigram carried out. This means we will finally be able to begin to understand what exactly is going on inside her little body. It’s a procedure we had read about when she was just a baby and had always been keen to get done, however, we had been told that she wouldn’t be able to have it until she was around seven or eight years of age.

But here we are – she is only five – and we are booked in to get it done tomorrow in our local hospital. When the letter arrived we were really shocked and surprised as it just hasn’t been on our radar at all. I actually re-read it a few times to make sure I was reading it right as we always thought we would have to travel to London to get it done.

We have had quite a bit of activity around the genetics side of things over the last few months (a whole other post of its own!) and this procedure is being carried out on the back of the results that we have received lately. Lucia’s Consultant Geneticist ordered the test, as what we find out through the Lymphoscintigram will be another piece added to the puzzle that we have been trying to figure out for the last five years.

So what is a Lymphoscintigram?

For those who may not know, this is an examination in which pictures of the lymphatic drainage of the limbs will be taken by a Gamma Camera after a small radioactive injection. The radioactive bit sounds a bit scary doesn’t it! Basically, Lucia will be injected between her toes with a radioactive tracer which will show up her lymphatic vessels so we can see how the drainage of her lymphatic system is working – or in her case, not working. It will take a few hours all in all and will involve a bit of sitting about and a bit of walking about.

Excitement v Fear

We are really excited to be getting it done. To finally be able to take a look inside our girl’s lymphatic system and hopefully see what we are dealing with and how we might use this information to help her. I’ve said before in previous posts that knowledge is power – so I hope this will give us more power.

When it sank in that this was happening I also started to get a little bit scared as well – which I think is completely natural as a mummy. But I am working hard at managing the fear and thinking of the positives that the information will hopefully bring. It was Max’s 9th birthday last week as well so with a weekend of birthday parties to organise I haven’t really had time to think about it all – until now.

I think my main fears are about the actual procedure itself. First of all they have to inject the dye in between the big toe and second toe of each of her little feet. That alone has me freaking out a bit. How sore would it be? Would she sit still to get it done? What happens if they inject and she pulls her foot away and the needle cuts her toes? What is the risk of infection? We are always told she cannot have any needles, injections etc put into her feet or legs because of the risk of infection yet here we are doing just that. But I have to be confident that the doctor doing the test will be vigilant and everything will be carried out to a tee.

How will she feel when the dye goes in? Will it feel strange? Will she feel nothing at all? And then after the test – how will it affect her? How much will it take out of her physically and emotionally? In a recent post (here) I have written about how her body reacts and ‘crashes’ when something big happens, so that is also playing on my mind a bit.

I have spoken to Lucia’s therapist about all of this of course and she will also attend the appointment with us which is very reassuring – for us and for Lucia. I know there will be a freeze spray for her toes to hopefully ensure she feels very little pain and we will use lots of distraction techniques so she doesn’t have to see any needles. I have spoken to her teacher to let her know she will be missing school and, if need be, will also have a recovery day. She actually suggested sending her home early for the rest of the week if she needs it which I was really appreciative of.

A new chapter

But aside from my overactive mind, my overarching feeling is of excitement as this is a huge step in our journey. This feels like the beginning of a completely new chapter in our lives, when we will finally start to understand what is actually going on with Lucia’s lymphatics. When we discover what has or hasn’t formed properly. What is there or what isn’t there. Is she missing vessels? Or nodes? Or both? And where exactly?

The results will tell us so much and hopefully open up so many more doors for us. Whether it be tailoring her daily therapy to better suit her or looking into the possibility of micro-surgery in the future – who knows? But we will finally have some more answers that we have wanted and needed for years. We know there are other tests and procedures that can also be carried out that might even look more in-depth, but this is a fantastic starting point.

So wish us luck – I barely slept last night and when I did my dreams were very strange so I’m pretty sure tonight will be the same. I have packed a bag of snacks and drinks, toys and books and plenty of cuddles from mummy and daddy! But, knowing Lucia, who always manages to take everything in her stride, she will no doubt handle it all superbly. And we will be there to hold her hand every step of the way.

I had the majority of another post written but after this morning I am bumping it for this one instead. It was one of those mornings where my heart was so full of pride, some may have escaped from my eyes!

It was Lucia’s last ballet class before Christmas and they had all been practising their moves over the last few weeks to show the mummys and daddys, brothers and sisters, grandparents and anyone else who wanted to come along. And I don’t think I was quite prepared for what we were going to see.

Our pre-ballet routine is the same every Saturday – Lucia gets her toe caps put onto her right foot as soon as she gets up along with her converse to try and reduce the swelling in her little foot to make her ballet shoe more comfortable and a better fit. After breakfast she also has some elevation before we get her compression on under her ballet gear. Then off we go!

When we arrived today, Lucia, along with the other girls in her class, disappeared into a little room off the hall where they practice and got their nails painted, a little bit of sparkle on their cheeks and a dash of red on their lips.

Then out they came with Lucia leading her little group, skipping around the hall with high knees and pointed toes looking like the most beautiful little swan I had ever seen in a beautiful white leotard and tutu covered in sequins. Before she even came out I could feel the tears pricking the backs of my eyes but when I saw her I had to really focus on holding myself together.

Watching her plie, pointing her toes, jumping and skipping – all while she beamed with happiness and confidence – just took my breath away. She loves to dance, simply adores it whether in class or at home, it is just part of her. And when I think back to when she was a little baby and everything felt so uncertain – whether she would be able to walk never mind dance – I feel like I have to pinch myself on days like today.

I watch her with complete awe. I watch her with the biggest smile on my face. I watch her and embrace the joy and confidence that she has and often feel completely overwhelmed by her. By my girl. My girl who we tell everyday that she can do anything she wants to do. That she can be anyone she wants to be. And then we watch her as she goes and just does it. And honestly, I can barely describe how that makes me feel as her mummy.

I say it a lot but it is like my heart could explode. That lump in my throat, the tears in my eyes, finding it hard even to breathe because my girl is out there doing what she loves most in the world. Being a five year old who loves to dance.

And as her wonderful big brother Max said afterwards – ‘Lucia was the most beautiful girl and the best’ – I’d have to agree.

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!