Archives for September 2016

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.