A long hot summer

I really hoped that I had managed to get around to blogging before now but in all honesty we’ve been too busy staying out of hospital and enjoying quality family time at home! I know, I can’t quite believe it either …Oli southampton.png

This summer has been so lovely and Oliver has been as good as gold. We’ve had frequent routine appointments but other than that we’ve spent our days either in the hot tub, playing or getting out and about. It’s been the first prolonged period of good health and progression with Oliver since he was born and we’ve not taken one moment for granted.

He’s turned into a little piglet and is now eating ‘proper food’- blended mash/veg/chicken daily and gobbling it up. Of course, there is still the odd cough/splutter but he’s actively chewing and moving food around his mouth which he just didn’t do for so long.

His swallow assessment lady (I know, ever technical with correct professional terms) has agreed to hold off on a video fluoroscopy for the time being too – woohoo! I’m definitely feeling hopeful. We now just have to get him to master drinking from a sippy cup as opposed to a bottle; fingers crossed it just clicks one day.

The standing frame has essentially been made redundant at the moment. He’s still in it occasionally but he isn’t so keen on his piedro boots. The standing frame was great but in a sense it’s quite restrictive; he gets quite bored and frustrated now because he just wants to be moving. Also, it requires far more effort from him to play in there as opposed to his chair so there’s probably a sneaky element of laziness there too.  oli eating

 

oli playing 2

Despite Oliver not being able to sit/stand/support himself I’ve often wondered whether if he was supported and the option for him to move his legs was there whether he might give it a whirl.  So, we spoke to his physiotherapist about a walker instead of the standing frame to see if it might encourage him.  She agreed and we’ve got an appointment at the beginning of October to go and see what one will be most suited to his needs. So excited – rock n’ roll lifestyle right here lads.

Medically we’re still in the same boat really. We had one abnormal result from his skin/muscle biopsy which has been referred to a mitochondrial team for further testing and analysis. Again, we’ve been given no definitive timescales nor information on what we can expect to come from it or what it may mean for Oliver’s prognosis. Shock, it’s another waiting game. He has a neurologist appointment in the near future so hopefully we may get some form of an answer or at least a plan going forward then.

 

hot tub olby

I won’t lie, despite our circumstance not essentially changing it still affects us when we receive news of any sort. I suppose we don’t know its significance or relevance yet, but it’s still ‘something’ for us to take on board and work into our considerations.

It resurfaces those horrible feelings of uncertainty and anxiety surrounding the unknown. It brings back those moments where the ‘what if/but’ questions endlessly intrude our minds. Although, we’re slowly developing and realising how important it is to allow ourselves the time to have those moments, those moments where we ‘lose it’ for a little while and then rationalise the situation and remember that still, we have no diagnosis, and that still, we don’t really know a great deal about Oliver’s illnesses. And, of course, to just take one look at him and see how well he has been doing and how happy he has been recently. God love him!

oli swing

Other than Oliver’s recent happenings, not a great deal has been going on. We’ve just been enjoying settling into our new home and getting back on the wedding planning train. What we had booked we ended up cancelling as it was just too much pressure and there was no way Oliver would’ve been comfortable. It was booked long before we had any idea of the extent of Oliver’s conditions and in hindsight pushing it back was wishful thinking.

So, we bit the bullet and cancelled. Initially, it was a weight off with everything else going on but then it sank in and we realised how much we do want to get married.  So, here we go again. It’s going to be very intimate, small and in our back garden with our nearest and dearest. Oliver has all of his creature comforts (ok, mainly the swing) and sharing our day with the people who have been there for us throughout everything is all we need.

Bring on the good times! (pretty please)

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