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.
That is just so amazing Jo-Anne, and your little schoolgirl looks so proud of herself. Many congratulations for persevering and getting what’s right. Keep us posted on progress please
Thanks Susie, we are so happy it has all finally worked out!
Thank you Jo-anne and Lucia for sharing. The stockings look great – so glad you have found a company to meet your needs at this stage.
As a new-ish therapist, it is so good to hear about how people need to slowly build up tolerance to wearing a new type of garment, rather than giving up first-go. And also to hear about the company’s quality care of clients, and quality production of garments.
Lucia is an inspiration – good on her for working with you to get the best solution for her. You are all amazing – your strength and conviction. I hear you on the anxiety factors too. Such a tricky road to travel.
Looking forward to reading your next update.
Have a wonderful school year!
xoxo
Hi Clare, thank you so much for your kind words. Lucia is an amazing little girl who just takes everything in her stride and rarely complains. I’m glad our experiences have helped you as well – building up on the time she wears the garments was a really important step for Lucia and we are just delighted with Juzo. Keep an eye out for the school post next (I cried a lot!!)xx
Amazing!!!
So so happy you and Lucia finally came right with good fitting garments. And that red is gorgeous!!!
Thanks Gila, we are so pleased/happy/relieved and everything in between. I’ll send you an email later this week.x
They look perfect and how outstanding you were able to take her thoughts and feelings into account as she adjusted to the new stockings. Just wondering if you wear rubber gloves when you put them on, you mentioned having difficulty pulling them up. The rubber gloves help me tremendously with ease of putting my stocking on. (I am only wearing on one leg though so that might be the difference) best wishes for the future.
Janet
Hi Janet, no we don’t wear rubber gloves…must give that a try. Hubby really struggles with these ones and his fingers do be aching after getting them on. Thanks so much for the tip!x
Oh my this is fantastic news, just amazing. So pleased for her, they look fab, such a beautiful colour. She must be so happy to have some coloured ones and the fact that they just look like normal tights too for school is just brilliant. Beautiful little happy girl! ? x
Thanks Julie! As you can probably tell we are so so happy! And Lucia absolutely loves them! All the other little girls are still wearing white socks to school as it is so mild but one mummy was telling me her daughter was loving Lucia’s tights! Makes me so happy 🙂 xx
Hi whenever we get new stocking they incudes a wee satin type sock to help ease the garment over Islas foot.
I’ve opted for open toe as you know as her toes were getting infected with closed toe. So it easily pulls out once the garment is over her foot , there must be something equivalent for closed toe garments surely ???
Oh, never heard of this Heather! how does it work? We are still closed toe though we have now also got her toe caps as well to try out. Need to work out when is the best time to use them as it’s too much to wear those and her tights.
I am so happy for you all! I know what a pain finding good garments can be. If she wears compression at night, you might check out E Z Medical Wraps. I am very short and they were able to make custom compression foam, a wicking sleeve and short stretches with velcro for me. I love mine. So easy and comfortable. Also, they have a special program for kids under 16. They are free of charge.
Thank you so much! We are so happy too – it’s been a loooong road to get here. Lucia isn’t in compression at night time yet but I’ll take a note of those and keep them in mind if the time comes. Thanks so much for the information 🙂
Please tell Lucia that my tights match hers, and I Love them, too! (Maybe she doesn’t need to know that I am 50 something). Juno does such great work, and the quality control is impeccable. Congrats on garments that she loves to wear. Half of the battle for sure!
Aw that is just fab! She’d love to know she matches with someone else! So glad you are happy and comfortable in them too. We are so impressed with everything about Juzo and most importantly Lucia likes them, is comfortable and they do a great job. As you say, it’s half the battle (or more!) 🙂
Hi, I stumbled across your daughters blog through Joe Zuthers Facebook, I would love to follow her and offer any life experience I can offer, I have had it for 35 years and am always learning , especially to live actively normal and to avoid the elephant leg look , I was born with the next stage lymphadema precox, I always nicknamed your daughters stage “fat feet” you are so ahead of the game !!! I went six years before I could get anyone in my area to figure out how to help me , Hopefully will talk too? Love the tights ?
Hi Debbie, I am so glad you found us! Did you mean through Juzo’s Facebook page? We would love you to follow us and offer us any information, advice and experience you have. Those first six years must have been tough without a diagnosis – thankfully we got Lucia diagnosed by the time she was about three-four months though that was a lot of pushing on our side, especially then to find the right treatment. If you read through ‘Our story so far’ you’ll see how it all happened. It can be hard being parents of a child with Lymphoedema as we have no idea how she actually feels so a lot of the time it is guess work on our side but we do have a meticulous care routine in place which we know really helps her. Please feel free to stick your email address in the box and you’ll get an update anytime I post a new blog. I just see an email from you, thank you so much, Look forward to reading it and picking your brains!:)
Hello just came across ur blog while looking into compression stockings. My son is 7yrs old and i cant get any answers on his congenital lymphedema. Nice to read about your daughter
Hi Amber, great to hear from you. If I can be of any help at all please let me know as we dare starting to get some answers with Lucia. It’s a long road but keep on going. Thanks for reading x