I’m laughing as I write the title to this post… because it’s such a mad little life I lead sometimes.  Today was truly rather an average day in the life of me… but as I was thinking about it nearly all of it seemed rather off set from most people’s realities.

The morning started well.  Sweet Girl woke up to the cat knocking at her window and demanding a cuddle (good cat!), and noticed a frost, which made her day start with a thrill and a smile.  A rare start indeed, and she had a wonderful morning.  She was able to get into school without a panic attack for the first time since September.

By this time, Little Man had been awake and playing for some time – his conversations are one of the highlights of my morning as I listen to the different voices and characters he invents for his games.  Breakfast, feed, packed lunches all followed suit in the one part of my day that was not at all average in my world, but far more Normal.  I treasure these mornings because they are so rare.

Off we went to school in the van due to my timetable that morning: social services meeting at school at 9.30, followed by a paediatrician appointment for Little Man at 11.   Therapy for me was due to follow at 2, then school pick up and an optician appointment for Sweet Girl.  Really a very ordinary day.

Unsurprisingly, the social worker of a few months ago had not actually confirmed the appointment with anyone other than me… So we were left the two of us, me joined by our new social worker (well, family support worker… we have been downgraded due to our “stability”.  After three months on this new status, social workers are once more involved and I suspect we’re about to be upgraded again.  You just have to laugh!).  Since we had spoken at length only last week, it was decided that we should reschedule the appointment so as to involve the other people who help Darling Man and I look after our Offspring.  All good, but a colossal waste of time.

I headed home for a cup of tea.

Twenty minutes later, I headed off to pick Little Man up from school and to the hospital.  He’s not well.  He experiences daily headaches, he is losing weight and is extremely lethargic.  Recent blood tests came back normal, so we have a little quandary.  Into the mix comes a large dose of maternal instinct (which unfortunately has rarely failed to be accurate in the last 9 years or so) telling me that something is really quite wrong.  The bit I’m hating is that the “feel” of Tom, his touch, how his hand feels, the way his skin feels is like only one thing I’ve ever felt before – him at 9 weeks.  One week prior to his diagnosis of leukaemia.  Major PTSD episode.  I hold his hand and I’m transported to almost exactly 9 years ago.

So… doctor’s appointment.  She knows me well, and knows Tom well.  She suspects that the weight loss and “loose skin” are probably due to his growth hormone treatment… so she will talk to the professor and we will decide shortly whether or not we should continue with that.  In the meantime, don’t mess!!  He has some strange bony lumps on his elbows, most obviously the right one.  I’ve only noticed this in the last few months, and frankly, a new lump doesn’t inspire confidence.  Although the paediatrician doesn’t think it harbours anything bad (she’s an experienced oncologist and endocrinologist as well as general paediatrician… I trust her), we do an xray to have a look at the bone.

Little Man Tom has very limited rotation in his arms.  When accepting something that is handed to him, he contorts his entire body in order to be able to offer his palm.  While the radiologist was positioning his arm, he was in a good bit of pain and quietly asked me,

“Mummy, can we ask the doctors to fix my arms so they can turn properly?  Or will they always be like this?”

Heartbreak.

Xray done.  I await the results.

Next step is to do a CT scan of his head.  We are looking to rule out the possibility of “something” that might be taking up space in there.  Deep breath.  And MRI would be better in terms of radiation exposure, but would necessitate an anaesthetic as he could never stay still enough without one.  And we don’t do general anaesthetics on Tom without really good cause (not least because it means going up to Great Ormond Street Hospital and time and fuss… oh and generally he’s a bit risky).  So the consensus is let’s do a CT with sedation to get an idea of what’s going on.  If need be, we can then do a targeted MRI which will be much quicker and should be doable without a general.  While he’s sedated, we’ll take some more bloods to compare with the more recent ones, and make sure we ask for a blood film so the consultants look at it in more detail.

Phew… job done.  Until we have further information we’ll settle for a follow up appointment in three months, though the doctor and I will stay in touch by phone or email.

While waiting for the generator test at the hospital to be over so we could get the elbow xray done, we went to the hospital pharmacy where I hoped I would be able to pick up Sweet Girl’s medication.  As important as I know it is, I dropped the ball and forgot to order it in time.  Last Friday saw me make a desperate phone call to the paediatrician’s office, and luckily she was as good as her word and the meds were waiting for us.

In a little aside, I’d like to point out that in the UK, it is very rare for a child to see a paediatrician.  Babies and children see general practitioners (GPs) for all their standard medical care.  This is not the case in France, where GPs almost never see children.  Here, a paediatrician is a specialist consultant that sees children who have significant medical problems… they also tend to be specialised – in enuresis, oncology, endocrine issues, epilepsy, neurodevelopmental issues etc etc…  So all this talk of paediatricians gives a clue as to the oddness of my life!

Meds were picked up, xray was done and it was back in the car and off to school.  With just enough time to spare to get myself to the petrol station to pick up petrol, food and some money for therapy.  I was hoping to check in on Sweet Girl who was aiming for her second consecutive full day at school, but had to be content with the receptionist being unaware of any issues.  Not what I was hoping for, to be honest.  I am convinced that I am NOT an overprotective mother despite what some may think.  So when I need to know that my kid is ok, there is usually a good reason.

Anyway…

My last two therapy appointments had been unaccountably thwarted by children and traffic, and my burden of weird dreams and stress had reached bubbling point, so off I went!

Good talk, thank you!!!!

Miraculously I was back just in time for school pick up, to find two children happy to see me and very tired, but on the whole in surprisingly good shape.  Tom had not had the correct feeds (something else to chase up again – could we not have a different battle please?), but I was happy to see them come out today.

Back into the car and off to town for an optician appointment for Sweet Girl.

Back in August she had an eye test that showed a very mild short sightedness in her right eye.  After a remarkable meltdown as she felt she had in some way “failed”, or was at risk of death if not something worse, she settled down to her slightly blurry eye.  But she is hyper sensitive in general, so I wasn’t surprised when she started to speak more and more frequently about her blurry vision.  That said, I am very short sighted, as is all of my family.  We’d reached the point where a further test was warranted.

My girl is really lovely… just take it from me, she simply is!

One appointment later, she clearly needs glasses.  They have been picked (2 pairs for no money… thank you NHS!!!), and will be picked up within the week.

A tired Mummy decided that McDonalds was absolutely the right choice for dinner.

Home, bath, pudding, bed!

PS… Upon arriving home, my phone was blinking rabidly… I must take time tomorrow to phone the company that supplies me with Little Man’s growth hormone, call his nurse back to let her know what happened today, and call Eldest’s key worker about … something!!

And there we have it.  A fairly average day.  What does yours look like?

Advertisements