So this week has been half term holidays for Max and Lucia and they have been lucky enough to have a whole week off school. After being spoilt by their grandparents for a couple of days I finished up at work and have enjoyed the rest of the week with them (unfortunately Daryn had to work) – and it’s been wonderful not having to set alarms, have no routine and to just do what we want.
The kids really only wanted to do two things – go to the toy shop as their Christmas vouchers were burning a hole in their pockets, and to go swimming. The rest of the time they wanted to spend at home in pjs, playing board games and chilling out together – my favourite things to do!
However, these plans had a slight adaptation when Lucia suddenly mentioned she hadn’t had her ‘pass the parcel’ (her bandages) on for a long time. This was on Tuesday night. I asked her if she would like to give them another go and she said ‘maybe’. So on Wednesday morning I sent Lynne (Lucia’s therapist) a message on the off chance she could squeeze her into clinic that day to wrap her up. And she could!
So after a visit to the toy shop where they both had loads of fun picking out new toys, we headed to the Lymphoedema clinic. Lucia sat up in the big chair and chatted and chatted and chatted before telling Lynne she had decided to have her pass the parcel put on again. What a big girl! She just asked her to be careful of her baby toe as it got a little bit sore and very itchy the last time before letting Lynne wrap her up – and even trying to help her out at one stage.
We then headed home for the next 48 hours – and she handled it so well. She was comfortable, happy and rarely mentioned the bandages at all.
What we did notice again though was her tiredness levels – like she is only working on half her battery power. It’s can be so easy to forget what is going on under the bandages. It’s not like she just has a big plaster on. The bandages are squeezing the fluid away from her foot and leg (much more than her everyday compression tights) and her body then has to process this fluid and get rid of it – and when her body/organs aren’t used to doing this, it is really very tough on her. (This post gives a little more insight)
She slept a full 12 hours on Wednesday night and on Thursday we had a much needed PJ day. We got out a load of games to play and after some trumps, dominoes and monopoly Lucia was suddenly exhausted. It was like her little brain just started to shut down and all she wanted was cuddles. So the three of us got on the sofa to watch a film for the afternoon and it was pure bliss.
She also didn’t have much of an appetite all day so she just snacked here and there when she felt like it. This was the same as last time.
And then it was Friday – time to get them off!
Results again were fabulous – her little leg and foot felt amazing. We could feel her shin bones and ankle bones, the top of her foot and could even see a vein that we normally can’t see. (All sounds so trivial but to us this is huge!) It is amazing to see that so much of the fluid can be moved out of her leg and foot – but unfortunately we know it soon fills back in again.
Lucia was also due to get measured for new garments so Lynne did this when the bandages came off and the idea will be to try and get her bandaged again for a couple of days when the new garments arrive for optimum fit. We did this last summer and her garments definitely fitted much better and snugger and I think did a better job on her wee legs and feet.
This round of bandaging came completely out of the blue and we were so grateful to Lynne for squeezing us in and accommodating us when Lucia felt ok about the process. These experiences need to be as positive as possible, so when she was volunteering to get the bandages on we took the opportunity and ran with it.
Then, once the measurements were finished we all headed for the swimming pool as both Max and Lucia love it! And of course – it’s super therapy for Lymphoedema! It was a great end to a lovely few days together – would it be bad to say we are counting down to Easter?!