I have previously stated that I would shy away from certain
things that people might find uncomfortable or may embarrass Cian in future
years; but as we have reached a significant milestone as far as we are
concerned, I can’t help but want to share it!

I said at the end of last night’s blog that we were trying
an experiment that would further challenge the level of sensation he is now
experiencing below the waist.

At the start of this week, urine tests indicated that Cian
had a water infection. This is not the
first, and we were told to expect these kind of things.

Since Cian first started to lose lower limb movement, he was
catheterised (tube inserted into the bladder via the urethra to empty the
bladder of pee directly into a bag), as it was not clear how much he would be
able to tell us he wanted to pee… and even if he could, there was concern that
he might not fully empty his bladder.

When sensation and movement didn’t return after the first
few days and weeks after his spinal surgery, not only was there concern over
future mobility, but also on long term continence issues.

So it was recommended that a catheter is changed every
couple of weeks, and in Cian’s case the tubes were flushed (water fed into the
bladder and extracted again) daily. The
flush was to further minimise the risk of infection and keep the tubes flowing

The catheter is also changed when an infection has been
found as the tube could retain the infection even if the body had fought it

So this water infection prompted a change in Cian’s catheter
on Wednesday. This resulted in 2 failed
attempts by doctors to insert the tube fully into the bladder.

As you can imagine (as I am crossing my legs tightly), this
procedure is extremely uncomfortable and distressing to Cian.

After the 2nd failure I asked whether it would be
possible, considering Cian’s increased sensation that we try for the night
without the catheter, to see if Cian could adequately tell us if he wanted a

When at the ward you learn to pick your fights with the
consultants and challenge when you think that there might be real benefits to
everyone (especially Cian). To my
surprise this was met with some enthusiasm and it was agreed that Cian could go
without the catheter provided he had a pee at least every 4 hours. This was a little awkward as it meant having
to wake him through the night.

But there was nothing to worry about. Even though after 6 weeks on not having to
worry about going to the toilet for a pee, he still had the sensation and told
us he wanted to pee; he was able to pee when we asked him to try; there was no
sign of any ‘dribbling’ in between pees.

So for the time being, he will be monitored to ensure that
he can pee independently with little or no accidents, and to make sure he is
fully emptying his bladder when he does pee.

The decision may be made that the right course of action is
to re-catheterise, but at lease this time without it gives us confidence of
future continence independence, and gives Cian a bit more freedom… and even
have a bath!

It also means the hospital staff don’t have to flush or
change the catheter, and it means that I no longer have to crop Cian’s pee bag
out of my photos!

Now onto the rest of today…..

And it has been amazing!
Cian was in a good mood waking, and when he woke from his GA he was
pleasant to everyone… including me!

We got back to the ward, settled Cian and prepared him for

The physio sessions last as long as Cian can tolerate them,
so it is always hit and miss how cooperative he can be… but given his recent
rise in energy levels we were hopeful of some good effort by Cian.

First, it was time for a real test. The physios brought Cian a contraption that
will allow his to stand, supported and be transported anywhere on the ward.

This was an absolute triumph as Cian thought he was the
‘bees kness’ in this thing, as we went for a wander around the ward. All the nurses and doctors made a real fuss
of him, because they had never seen Cian on his feet, and had never experienced
this element of his personality before.

After about 10 minutes we went back to the room, as the
Physio’s were convinced that Cian would be exhausted… but to their surprise, he
was up to add more accumulated beads to his courage chain… he really does love
this aspect of his journey as he is now more accepting of certain procedures if
it equates to more beads!

Then he was still not finished, and asked to play
games! Although he had lots of new games
and toys for Christmas he had specifically asked us to bring 2 of his favourites
from home, those being Caterpillar Scramble and Mr Men Snakes &

We all witnessed his competitive streak, as he managed to
win both games WITHOUT us having to give him chances. It was great to see him active, using all his
major muscle groups below the waist and really enjoying himself. When he threw the winning score at Snakes
& Ladders he almost launched himself out of physio Ann’s protecting arms, across
the giant floor mat to move his counter on the winning square!

So after 2 hours of physio, he went back in his bed for some
food and for everyone else involved to have a rest.

Once I left at 4 his energy levels didn’t decrease and he
was back down the playroom with mum.

I truly can’t wait for the weekend when I can take Dylan and
Bethany to see Cian and play with him in this mood. They have been frightened at times and
concerned for Cian, so hopefully them seeing him like this will give them the
boost that it has given their mum and I.