A little catch up

So the first two months of school have passed by, we have enjoyed the half term holidays and are now on the countdown to Christmas! (Too early?!) So this is a catch up post as to how things have been going as there have been a few wee changes to Lucia’s routine since September.

Being a big P3 girl now means that on a Monday and Tuesday she stays in school an extra hour and ten minutes compared with the rest of the week, so as you can imagine I worried about how this extra time would effect her. We also introduced a half hour swimming lesson each week. The usual things went through my head – how will this effect her energy levels? Will she be able to cope? How will it effect her swelling? When she is tired her body struggles to cope – would these few changes be manageable? Will the extra few hours at school make her body more sluggish or her swelling increase? Will she be able to cope with the extra work if she is tired? Is adding on a swimming lesson too much? Or will she adjust and be just fine?

I tried to rein all of these thoughts back until I was faced with the facts – until she actually started into the new schedule and just waited to see how she would cope. And she has been doing so well. She is still adjusting to the changes and we have had to take things day by day, make decisions to manage her energy levels and ensure that she doesn’t overdo it, but still gets to enjoy school, dancing and swimming as much as possible.

New routines

The first day back to school completely floored her. She had a great day, loved seeing her friends, her new classroom and being ‘the big girl’ staying later, but my goodness was she tired. By the end of the week she was completely shattered, but even though she was tired she had a great week and settled in well to school.

To counteract this we tried to ensure earlier bedtimes and plenty of rest, elevation and quiet time. That first week she also skipped her swimming lesson as she just didn’t have the energy – and it is vital that we do not push her to do things when she simply can’t physically manage it.

Flexibility with Lucia is really important. I have mentioned in previous posts that when she is tired in this way, things just have to stop. Whereas with Max we could probably let him rest up for a bit and then send him on to football training for example, this just isn’t the way for Lucia. So we are always mindful that it’s not just regular ‘tiredness’. When your body is struggling to work on a daily basis as it is – in her case her lymphatics –  everything else on top of that just exacerbates this fatigue and she shows this both physically and mentally at times.

So over the last few months she has missed swimming a couple of times, she has skipped dancing a couple of times and there has been one evening when she was too tired to complete her homework, so we just left it.

Lucia’s teacher is very understanding and her assistant in class is as fabulous as always and gives her such great care, meaning we know in school she is well looked after. They have such a brilliant relationship and Lucia will always tell her how she is feeling. Somedays she will ask to stay in during break time rather than head to the playground if she doesn’t quite feel up to it.

Interestingly, at our recent parent-teacher meeting, Lucia’s teacher commented that she noticed Lucia would sometimes leave out pieces of her work at times or not fully finish something – not regularly but the odd time. And she said she knew it wasn’t because she couldn’t do it or that she just couldn’t be bothered, so she didn’t feel right to push her on it. She asked would this make sense to us? Which of course it did and I explained how her lymphoedema can affect Lucia both mentally and physically, that she does sometimes reach a point when her wee brain just can’t think due to fatigue. So now we know her teacher is always looking out for that which is so reassuring.

The ‘episodes’

I have mentioned these ‘episodes’ before here (I don’t really know what to call them?) and we have had three of them since September. On the Friday night after her first week back at school Lucia suddenly felt sick, had terrible nausea, her heart was racing and her legs were ‘wobbly’, so wobbly she couldn’t stand on them. So she lay on me on the bathroom floor for a while until the nausea mostly passed and she was able to settle in bed. That weekend we did nothing and just let her rest and recover as they do take quite a lot out of her. We assume this one happened due to the excitement and adjusting to the routine of the first week back at school.

Then last week she had another one on Tuesday evening and a mini version on Thursday morning when she woke up. So we kept her off school on Thursday and Friday for total rest and lots of cuddles to try and help her body and energy levels get back to normal. This was her first week back to school after half term so again we think they happened for the same reason – but in all honesty, who knows? This is just our guess.

Hoping we are doing the right thing

Reading back on this I realise it may sound like she has been struggling the last few months but she actually is coping really well – as long as we ensure that we manage her daily life for her so that most of the time, she can do all of the things she loves to do. But we do just have to take things as they come on a daily basis and make the call each day as to what we think is the right thing.

I do fret about her overdoing it and if we were right to add the swimming into the mix when there was also a change at school. But we have introduced outside activites very slowly with her.

Two years ago she took on one hour of ballet a week. Last year she added another hour of dancing midweek. Then this year a half hour swimming lesson. And we would really love her to be able to keep at the swimming because the benefits for her Lymphoedema are fantastic. But we will always continue to weigh everything up.

Overall Lucia is a happy girl. She loves school, enjoys her work and playing with her friends. Ballet and dance is still her first love and she also adores swimming. She is confident in herself and her abilities and continues to talk about her lymphoedema, always asking questions or just general chat and all in the most positive of ways. So we will keep on doing what we are doing, being mindful and taking it one day at a time as always.