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.

I was doing a bit of reminiscing the other day and flicking through old photos of Max and Lucia when they were little babies – and mostly feeling complete disbelief that they are now eight and almost five. It feels like I have blinked and all of a sudden they have grown up so much.

But aside from my heart having a little weep at the speed of time, I was also looking at photos of Lucia’s tiny feet and legs in those first months of her life and feeling a little bit sad, but also marvelling at the difference between then and now.

When Lucia was born the doctors noticed she had ‘puffy legs and feet’, but at that moment and for the first 12 hours of her little life we didn’t give this a second thought, as it was assumed this was just because of the way she had been crunched up in my tummy. You can read the rest of what happened next here.

Looking back at just how swollen both of her little legs and feet used to be brings back memories of the fear and uncertainty we had back then as to what could possibly be wrong with our perfect daughter. Was it life threatening? Was it connected to her heart? Or her kidneys? Would she be able to walk? Was it forever or would it sort itself out as she grew? So many questions until we go her diagnosis – and then a million more questions after that (and what feels like a million more everyday still).

It brings back the memories of nights I spent in tears feeling so helpless and wondering why or how this had happened. Trying to do some research on the internet which just made things worse. There’s only so many times you can read chronic, incurable, progressive before it really starts affecting you. So Daryn banned me from googling.

I also have very vivid memories of when our little nephew was born – two months after Lucia – and going to visit him in the hospital. He was so beautiful and we were so happy to meet him. But when we left the hospital I couldn’t stop crying because seeing his ‘normal’ (I hate to use this word, as what is normal?) feet and legs really made me realise just how swollen Lucia’s were in comparison. When we were holding and cuddling Lucia all day and night her feet and legs were ‘normal’ for her and to us. Over time they probably didn’t seem just as swollen in our minds because they were our beautiful little girl’s feet and legs – plus we were so busy parenting a three year old and a newborn, our exhaustion probably helped us forget at times. But seeing Seth that day really hit me quite hard and made me realise that actually, there really was something quite wrong.

It was only a month or two after this though that we found Lynne, our therapist, and we had someone we could talk to about things rationally, we began to understand this condition better – though we are still learning everyday – and were able to try and get some control over it rather than the other way round. And I think, so far, we are doing an ok job.

Those photos show just how far we have come in her almost five years of life. How her swelling has changed. How we have grown in confidence and how we are learning (still everyday) to manage her Lymphoedema.

It is interesting to see how her swelling has manifested more in her right leg and foot than left, especially considering the swelling was equal in both sides when she was a baby. We have spent hours, everyday, since Lucia was only a few months old caring for her Lymphoedema to the best of our ability, to try and ensure we maintain it and slow the progression.

Seeing her walking was an amazing milestone at just over 18 months – as we honestly didn’t know how she would manage some days given the fluid on the soles of her feet. Now I feel like I spend half my time shouting ‘don’t run!’.

The first time we got her shoes was a massive deal – she was almost two years old meaning although she’d been walking for months in the house, we had never been able to get her outside. We are very thankful for Converse as without them I don’t know what we would do! (And Matalan where we managed to get her a little pair of boots thanks to a recommendation from a fellow lymphie mum).

She is wearing compression. This was a huge step for us as we knew when we started down this path it would be for the rest of her life. But it is one of the best things we could have done for Lucia. Compression has transformed our little girl’s condition and is such an important part of her everyday treatment.

We came across the Physio Touch machine – again an integral part of Lucia’s daily treatment and we wonder how we coped without it. This machine gives us more control and confidence over her condition everyday. Read more about this here.

She is at school and loving it. She is teaching the school, her teachers and her friends about a condition they knew nothing about before meeting her. And she takes it all in her stride. She gets extra assistance to ensure her compression garments are at optimum fit all day, at the toilet and supervised outside to ensure she is safe – and she comes out happy (but tired!) each day.

She started ballet class – and seeing her beaming while she performs her dance moves each week makes our hearts sing, as again, this is something we weren’t totally sure would even be possible. You can read more about her love for ballet here.

She is getting on with living and loving her little life – despite having a not very nice condition. She can be very matter of fact about it if people ask which makes us so proud as she doesn’t consider it as a big deal. It is just part of her.

Yes she may tire more easily, find some things slightly more difficult, need a bit of extra help in her care and daily treatments to ensure all her needs are met – but she accepts all of this and just carries on.

She is amazing. Inspiring. Strong. Fiesty. Stubborn. And she never gives up. As she said to me one day: ‘Mummy, I have Lymphoedema but I can do anything.’ Oh yes you can my girl, oh yes you can.

Happy New Year to you all! 2017 is here! And we must be one of the few houses that still has our tree and lights up, but the kids only head back to school tomorrow so we’ve been enjoying the glow for a little longer.

We have all had a lovely few weeks break off work and school, enjoyed lots of time at home (in our pjs), played with the toys and games that Santa delivered, took a trip to the cinema and had a few walks in our local forest park which is one of our favourite ways to spend a family afternoon.

The main aim of the Christmas holidays this year was for all of us to recharge and to try and get Lucia back up to full power before going back to school. (If you check out my last post you’ll see just how tired she has been and susceptible to illness since starting school). We were gutted though when she woke up on Christmas morning dosed with a cold and cough that has taken most of the holidays to shake, including being up most of Christmas night. But she is over the worst of it, has been eating better than she has in months and her energy levels have definitely picked up too.

This Christmas I have also felt a bit more chilled out (believe it or not) when it came to Lucia’s compression. By that I mean I have handled a few days of her not wearing her garments. Shock horror!

Always learning

Over the last few months when Lucia has been ill we have learned that she can cope with a days break from her compression. One day when she was feeling particularly bad we just thought it would be cruel to go through the daily routine of struggling to get her into her garments, especially when she was feeling so rotten. So we didn’t. But believe me when I say, that this was a decision I particularly wrestled with and fretted about in case something really bad happened – in my head I had fluid zooming into her legs and feet at high speed and ballooning out of control. Completely irrational and of course, in real life that’s not going to happen…and it didn’t. So we learned that she can cope with a 24 hour break with no detrimental effect.

Compromising

Therefore, during these Christmas holidays we have relaxed and allowed her a few days of freedom – with a little compromise. On the first of our pj days Lucia really didn’t want to get her tights on and wanted to just stay in her pyjamas like Max. Usually we put her tights on and pjs over the top, but on this day she didn’t want to.

So we came to an agreement that if she wasn’t going to wear her tights she had to wear her toe glove all day. (Or toe caps to give them their official name.) We have had a toe glove for a few months now and it does an amazing job at reducing the fluid in her right foot and toes. She is mostly happy to wear this and it means that I feel a little bit happier about her not wearing her full garments and Lucia gets to have a ‘day off’ which she loves.

It has taken almost three years to get to this ‘relaxed’ point though which just shows how much there is to learn about managing this condition, the trial and error involved, sussing out what works for your child and what doesn’t and now learning to compromise with Lucia so she can begin to feel in control of her own condition. But most importantly in all of this we still need to ensure that we are continuing to do everything we possibly can to manage her Lymphoedema everyday, as this is the key to maintaining it. I feel like we are continuing to build up more confidence in what we are doing and working on getting that balance just right for us – and most importantly, for Lucia.

Bring on 2017!

I can’t believe it’s nearly Christmas (and it’s been two months since I have posted. Way too long!) Things just seem busier than ever at the minute – and I know that goes for everyone. I constantly have a blog post or two in my head but finding that hour to actually get it out of my head and onto this site has seemed impossible lately!

Anyway, this is an update on how Lucia has been getting on at big school and what we have learned so far. It is also a post that I’d love to get some advice on if anyone has any experiences to share.

Loving school

So Lucia has now been at school for three months and she has been absolutely loving it. She skips in most mornings happy to see her friends, enjoys play time in the classroom, getting out in the playground and has a real thirst for knowledge and learning. She is meticulous in all of the little bits of work she has to do, participates really well in class and is loving learning to read and write.

She also still loves doing her homework (mostly!) – she used to ask for homework in nursery as she always loved sitting up at the table while Max was doing his – so now she has her wish. She was particularly excited when she got her first ‘proper’ reading book with words last month and now enjoys pointing out words she recognises when we are having a story. Her teacher also told us she is very well-mannered and well-behaved and always has a smile on her face.

Although Lucia starting school has been a big step, our minds have been put at ease thanks to a wonderful assistant in her class who takes amazing care of her each day. She makes sure her compression garments are adjusted every half an hour throughout the day so they are always positioned correctly, helps her at the toilet, watches her in the playground for any trips or falls, makes sure she is safe going up and down stairs and overall just makes sure she is ok physically and mentally. And Lucia absolutely adores her. Knowing there is someone there looking out for her definitely helps at the morning drop off.

A few things…

However, there are a few things that we have noticed since September, and that is Lucia’s tiredness and sickness levels since she started Primary one. And it is all the time. I remember Max being really tired when he started school and I know all of the Primary one children are exhausted as it is such a huge change to a four year old’s life and routine – but I do think Lucia’s fatigue is more intense.

Nursery was only two and a half hours long and Lucia was in a class of 26 in a separate part of the school. Now she is in for five hours a day and mixing with over 400 children on a daily basis in the lunch hall, playground, assembly and up and down corridors.

Sickness

Since starting in September, Lucia has pretty much constantly had some kind of sickness. High temperatures, sore throats, bad chest, the dreaded vomiting bug and never ending coughs and colds. She has been off school a number of times already, but even when she is ‘better’ she still always has a rotten lingering cough and cold. Then, just when we think she is improving she’ll wake up in the morning completely dosed once again.

So my first question is, do those with lymphoedema or parents of children with lymphoedema find this? We know that the lymphatics and immune system are intertwined and therefore her immune system is compromised, so is this just a normal part of life that we will learn to deal with? Or as she grows up will she grow stronger and more tolerant of illnesses? It’s just not fair and we feel so so sorry for her little pale face.

Fatigue

And then there’s the fatigue – which obviously the sickness also feeds into. But oh my goodness, this is a whole new world of exhaustion. She comes out of school completely wiped out – she is so tired some days that she can’t physically walk to the car and needs carried because her wee legs just can’t manage it. When she gets home it can be tough to get her changed/fed/or homework started because she just can’t physically or mentally manage it and all she can do is get onto the sofa and rest.

She is a lot more teary that she would usually be and will have more frequent melt downs over tiny little things because she is struggling with this fatigue. She has even said to us on several occasions that she doesn’t know why she is crying (or shouting!) and in her words, ‘just can’t control it’. I know I can certainly relate to that – when you are just so tired that all you can do is cry.

She needs wakened every morning and it takes her time to ‘come round’ before breakfast and getting dressed – and some mornings asks to be carried up the path to school. Her sleep can also tend to be quite broken which obviously doesn’t help either – she can be up once or she can be up four times a night which always has a knock on effect.

Her teacher even commented at our parent-teacher meeting that she can see Lucia flagging in the afternoon – and it’s not an ‘I can’t be bothered doing this activity anymore’ but an ‘I can’t physically continue on’ and they will take her work away and allow her to complete it at another time. It’s so good that they understand her well enough to not push her at these times.

Add to that the days that we carry out her Physiotouch therapy and we know she definitely feels more fatigued the day after, as we can see it.

So again, is this fatigue normal? Will it get better as she gets older and adjusts to school life?

Aches and pains

Finally, maybe it is just as she starts getting a little bit older she is learning how to articulate things a little better, but she also now tells us about pains in her legs a lot more often. Nothing major thankfully (apart from today when she seems to have strained her calf muscle) but just general soreness or maybe it’s stiffness. She would sometimes mention her ankle being sore, particularly after ballet, but she has also talked about a sore hip/thigh/knee on both legs at different times over the last few months and at various times of the day.

Again – is this normal?

It can be so hard and frustrating for us as we are always trying to ‘guess’ how or why she is feeling like this since we have no clue really how lymphoedema can make you feel. So if anyone can give us any sort of feedback that you think may be helpful it will be gratefully received.

Happy little lady

Aside from these few niggles, Lucia is still her happy little self and just gets on with enjoying her school life, being with her friends and of course her beloved ballet which is the highlight of her week! We do always be mindful of her tiredness and ensure that we allow her enough rest at the weekends and ballet is more than enough as one outside of school activity. We very much let her lead us and if we have plans to do something but feel she could benefit from a rest day instead then that’s what we do.

Life is definitely all about balance.

It’s nearing the end of September and I am still not sure if I have quite come to terms with the fact that both of my babies are now at school. For the last seven years and eight months I have always had a wee side kick at home with me on my days off work and I am trying to get used to the fact that this has now changed.

Max returned at the start of September as an experienced P4 pupil (with longer days and more homework) while Lucia is a brand new, sparkly P1. I had been trying not to think about all of this too much over the summer and then, all of a sudden, the time had come and Daryn and I were walking our two little ones into school by the hands.

Tights and shoes

Now, when I say I had been trying not to think about it all, obviously I had to do a little bit of thinking as we were trying to sort out Lucia’s compression (see my last two posts) to see if it was possible to get her some red garments to match her school uniform.

For so long we didn’t think this was possible and were deliberating whether to dress her in trousers instead of a pinafore and tights, to put red leggings over her garments or to just try and settle for white ones.

In the end, Juzo came through for us amazingly and Lucia is now wearing the colour ‘Cosmic Coral’ in the Expert range every day to school. They match her uniform to a tee and she absolutely loves them! When she first saw them she shrieked ‘they’re red!’ with the biggest smile on her face and we can tell she feels so special and proud to be wearing them. Most of the girls are still wearing white knee socks but this doesn’t phase her at all as she is so used to wearing her tights and she just simply loves the fact that these match her uniform.

As for school shoes she is rocking a lovely little pair of black Converse! We looked into ‘proper’ school shoes but knew that it was unlikely we’d find a pair to fit. So instead we got her black Converse, changed the white laces to black and she definitely looks like the coolest P1 around!

Amazing school

We are really fortunate that the school Max and Lucia attend is, quite simply, wonderful. This is the same school Lucia attended nursery at last year and the level of care she received was outstanding – the teacher really went above and beyond the call of duty in every way. Check out previous posts here and here.

We are very thankful that this is now being followed on for P1. We know that Lucia’s garments are being checked and adjusted on a half hourly basis, that she has someone to help her with toilet trips, put on her outside trousers at break time and lunch time, she is supervised from a distance in the playground in case she has any falls (she’s had two already but all ok) and is watched going up and down stairs for any trips.

We also put together a small first aid kit with savlon cream, steripods and mepore dressings for the teacher to keep in the classroom and to take out on any excursions. She also has brilliant emotional support as well as this practical support and it has eased our worries about the P1 transition hugely.

P1 is a huge step up from nursery with twice as many hours per day which is a lot for little four year olds. They are currently building up to the five hours and Lucia has actually been off sick a few days already (schools are a never ending source of germs, Max has had an eye infection too!) so she has only just completed a full week and was shattered!

Finding new routines

So we are still adjusting to this new routine and at the moment still working out how to schedule in her vital therapy around school hours, school runs, work, homework, swimming, football and other clubs as well as the non-stop busy day-to-day life in general. Because Lucia has been ill a few times over these last few weeks including lingering colds and coughs we haven’t been able to carry out her therapy, so we still need to figure out just when this will happen each day. Right now I really feel like there isn’t enough hours in the day – but we will have to find them.

During the week, afternoons will be the best times for doing her Physio Touch therapy as we have found if we use it before bed she tends to be more tired in the morning – which isn’t good for early school starts. However, we are still very much finding our feet and trying to get this new routine sorted, so things haven’t quite fallen into place just yet.

Overall though school is going well for both Max and Lucia so far and seeing them dressed in their matching uniforms and heading off to school makes us so proud each morning. Max is loving having his little sister at school (except when she blows him kisses in the corridor!) and has been doing the big brother thing by checking up on her in the playground and in the lunch hall which melts my heart. It has been a big change for all of us and we are all learning how to adapt to this new way of life – we just need a little more time to get there.

So I have about three blog posts written in my head that just haven’t made it on here yet – mainly because we were too busy enjoying the summer holidays before school kicked in, and then school started and it’s been a bit manic getting used to new routines.

So here is the first post which is a follow-on from my last one about Lucia’s compression. I was totally overwhelmed by the response I got and cannot thank everyone enough for all of the invaluable advice and support we received both in the comments and by email.

As you are aware we’d been struggling to find the right compression garments for Lucia and were getting increasingly frustrated as the months went by, because we kept getting let down with ill-fitting garments from our previous company.

So we decided to try a different company – and we are now in a much happier place. Enter Juzo.

Wonderful Juzo

Juzo was not a company we had tried before but we had a good look through all of their different types of garments, chose a pair that didn’t seem too thick or heavy and got Lucia all measured up. Unfortunately however, the type we had picked couldn’t be made in Lucia’s small size so instead they suggested Juzo Expert range.

To begin with, I’d like to say how amazing their customer service is – they were in constant contact with Lynne and with the pharmacy every step of the way so we knew exactly what was happening and when we would be receiving the garments.

And then they arrived. In all honesty my first impressions were a bit, ‘Oh no, they seem very heavy and ribby’ because previously we had been used to much lighter, smooth compression. However, these new garments were flat knit as opposed to circular knit, so they were always going to be different.

But they were impeccably made – you could see the time and effort that had went into making them, just for Lucia, and the quality was fantastic. I also found out that Juzo’s quality control is stringent and the first pair made for Lucia didn’t pass – so it is good to know how strict they are at ensuring everyone gets exactly what they need.

Getting them on

For the first 10 days or so after receiving them, Lucia point blank refused to let us put the tights on her. And when Lucia has her mind made up it takes A LOT to change it. She just said, ‘they weren’t her tights’ and I can see see where she was coming from as they were very different to what she had been used to.

However, after much talking (and bribery, obviously!) we finally got her to agree to try them on. The first fitting took almost half an hour (and two sore shoulders on my part) to get them on! But this meant that a) we were learning how to fit new garments and b) they were excellent compression – and we got there in the end.

The fit was brilliant. I know this might sound like a daft statement but they really were made for her. They fitted her everywhere to a tee. They fitted her feet so no squashed toes, the leg length was right so no gathering at the tops of her thighs, they came up far enough but not too far on her belly, there was no gaping waistband – they were brilliant. And most importantly, Lucia said they were ‘comfortable’.

Breaking them in

Once they were on Lucia did also say they were very tight, but the little super star managed them for about two hours on the first day before wanting them off. They we just slowly built up her time in them day-by-day until after a week or so she was able to manage them for between 8-10 hours each day.

And once we could see she could handle them and how beautifully they fitted we ordered another pair – both in ‘almond’ which is a sort of beige. We finally had made a break through and the relief was ureal!

Colours, colours, colours

The next brilliant thing about Juzo is their colour range. Lucia was due to stat big school in September and the girls can either wear white socks or red tights. Obviously the socks weren’t an option and we considered getting red leggings to put over her tights so she could be just like all the other girls. But then we discovered Juzo had a reddish option in the Expert range. The official name is ‘Cosmic Coral’ so we weren’t sure if they would be more pink than red – but when they arrived and Lucia saw them for the first time she actually squealed with excitement in the car shouting ‘They’re red, they’re red! I love them!’

And when we tried them with her uniform they looked perfect – and because they have that slight rib they just look like ‘normal’ little girls school tights. I have never been so happy! (Combined with the red in her uniform they pass as red but they also look more pink with other clothes, so they are pretty versatile.) I’m keeping the gorgeous photos of her in her uniform for the next post but the above photo shows the lovely colour and fit.

Relief!

So finally, after months and months of stress, worry and fears it feels like a massive weight has been lifted from our shoulders. It’s only when something finally works out that you often realise just how much anxiety you are holding onto – and when that anxiety is about the welfare of your daughter and her medical condition it is understandably pretty huge.

But now we are in a great place compression wise and Juzo are my absolute heroes right now.