The fact that it’s March and I’m only just getting around to writing a blog post says it all really.
I’m not sure why but it’s like 2019 hit and everything started moving at 100mph. I can’t count the amount of appointments we’ve had already and if I’m being honest, it feels pretty constant and relentless at the moment.
We had an appointment before Christmas with a Mitochondrial Doctor who spoke to us thoroughly about the disease and the likelihood that Oliver’s diagnosis lies within the spectrum of this. Oliver’s skin and muscle biopsy results point towards this theory also and his medical history sort of matches up with the symptoms of the disease
I would say that this was the most difficult but productive appointment we have had throughout our journey so far. However, if I’m being honest I would also say that it came a year too late.
It’s been a year since we were recruited to the 100,000 genome project too so we were hoping for answers, however we have since received a letter informing us that this isn’t likely until July now which is deflating.
Following a consultant appointment at the beginning of January Oliver has been referred for a Gastrostomy.
He is still very underweight and his weight has remained stagnant since summer. We knew it was inevitable but it doesn’t make it any easier.
We had his pre-op this week and discovered that the consultant would be doing a Button Gastrostomy with a Gastropexy. There were many reasons for this that I don’t think I can recall now, but we’re at the stage with Oliver that if it’s safe and going to help him then it just needs to happen. The consultant did also find something wrong with his testes when examining him so this will be able to be fixed during the same operation.
I’m sure it will do the world of good for him in terms of his development and strength, but I am worried about how he will cope with the procedure and recovery afterwards. It will be a massive adjustment for us all but I really hope it will pay off for Oliver.
Oliver also had an MRI at the beginning of February so hopefully we will receive that report shortly and hopefully it may point towards a diagnosis. It took him almost two weeks to return to his ‘usual’ self after the anaesthetic which doesn’t fill me with hope for his gastrostomy.
We were lucky enough to have a walker for a trial last month too, however sadly it didn’t work for Oliver. I don’t know why but I had it in my head that he might just have taken a couple of steps. Sadly, this didn’t happen. He was just too weak and did the motion for a couple of seconds but he wasn’t supporting himself correctly so it was a no-go.
We have also bitten the bullet and begun the Disabled Facilities Grant process which will enable us to have downstairs living for Oliver. To be honest, I’m starting to feel the strain of lifting him everywhere. It’s nothing major but he is growing and does like to fling himself about at the most inconvenient times so it’s more for safety than anything. I think this will be a long process but it’s for the best.
All in all, I would say things are pretty overwhelming at the moment. I’m ‘wobbly’ most days which is very unlike me. I’m realising that the future we’ve been putting off thinking about or acknowledging has come around far quicker than anticipated. I’m struggling to shut my emotions off and am beginning to feel really drained.
If I’m brutally honest I didn’t want this life and I didn’t want this life for Oliver. I don’t want people coming out to the house weekly, I don’t want to be familiar with hospital walls and medical lingo, I don’t want appointments with several different doctors talking about the same thing and I don’t want to imagine a world where Oliver doesn’t get to be a part of it.
I wish love was enough to fix him and I wish he knew just how much I loved him.
But, the shitty thing is that wishes don’t come true and that this is our life, it’s our reality and there’s nothing we can do about it. All we can do is give Oliver as much love, nurture and cuddles as we can and make sure he’s as comfortable and as happy as can be. Now the weather is warming up we’re getting him back out in his swing and it won’t be long before we can get him back in the hot tub.
We really need to cling on to the positives and cherish the little bits of goodness that we have in our lives. As ever, our family support is simply amazing and we are so blessed.
On another note, Craig and I have recently embarked upon a new adventure. We’ve loved planning our own wedding and didn’t want the enjoyment to end. We’ve started making dried flower hoops, crowns and buttonholes for weddings. If you want to know more we’ve added a page to this blog expanding on our new project.