I have no real theme for this post – just a bit of an update really on day-to-day life over the last few weeks and some general musings. We are all just back to work and school following the Easter holidays which were fantastic. The four of us had two weeks off to spend lots of lovely time together which was really special. We had day trips here and there, went to the pool, cinema and picnicked in the park as well as enjoying some relaxing days at home too. The break in routine was brilliant and we are all struggling this week getting back into it again!
Sickness and swelling
At the start of the holidays Lucia took a really bad head cold and chesty cough which meant we couldn’t use her Physio Touch machine or do any manual lymphatic drainage on her for over a week. The last few times she has took sick we have really noticed how quickly the fluid builds up, particularly in her right foot and ankle, but have no idea why. Does this happen to anybody else? Is it because her immune system is overloaded trying to heal her body? There are still so many things to do with this condition that we don’t yet understand!
As you can imagine, when this happens we worry about the swelling building up, it is a bit trickier get her shoes on and she now also sometimes complains of her feet being uncomfortable – but we also know that when the sickness passes and we start back into the Physio Touch and massage that things will settle down again.
The Physio Touch is still going really well and we are very happy with the difference it makes to Lucia’s Lymphoedema. You can read the full post here. We have got into a great routine now and the soft feeling of her legs and feet and seeing those little ankle bones and long toes after using it is just wonderful.
Over the last few months we have also had a lot of frustration waiting on new compression garments and I know we’ll definitely not be alone in this area. Usually when Lucia gets measured the garments arrive within 10 days to two weeks. Most of the time they will need some kind of alteration and we send them back to the company for fixing, but all in all we usually get wearable compression garments within a month at the most.
This time though we have been kept waiting almost three months, so as you can understand, we have become increasingly frustrated and angry. This part of Lucia’s treatment is one of the most vital components and it really is disgraceful that anyone – especially a four year old – should have to wait this length of time.
In fact, we have actually had to get Lucia re-measured as the old measurements will now be out of date – not to mention the compression she is currently wearing is six months old, completely worn out and are so ill fitting that she is probably better off wearing a ‘normal’ pair of tights. I am really hoping that things have been sorted now but we are really disappointed that we were even in this position in the first place. Fingers crossed we’ll have some new garments very soon.
Our Converse friends
As you know Lucia lives in Converse and we recently got her a pair with two velcro straps across the top. She has always worn the lace-up style as the velcro shoe has never fitted her, but on our last shoe shopping trip we were delighted to discover she could get her wee feet into a velcro style! She very happily picked out a pretty pink and purple pair and has worn them now for about a month. However, we have since realised that they don’t offer the same compression as the lace-ups. The straps leave two marks across her feet and definitely stop the fluid flow, pushing it into her toes and trapping it between the straps. So, as lovely as they are, we are reverting back to the lace-ups again which give a more even compression.
A little bit random!
I know this post has been a little bit of everything so thanks for bearing with me!