These past couple of months have been a whirlwind. Oliver has barely managed a week without appointments, I haven’t had time to blog (brace yourselves, it’s a long one); juggling work and trying to stay on top of all his paperwork has been a struggle.
Home Suction being sorted (finally) has made a massive difference. Receiving this equipment has been such a weight off of our shoulders. It means that when Oliver can’t manage his oral secretions or does fall ill we have been able to intervene a bit at home and stop him from aspirating. It’s not a miraculous cure and I’m under no illusion that we may have to have a hospital visit soon, but I’m trying to be more of a ‘glass half full’ person … I know, I know, we’ll see how long it lasts.
After taking some getting used to, Oliver’s glasses are having such a positive impact on his development. Despite him not being a major fan of them and looking slightly like an alien, he is far more responsive, vocal and does seem to be taking more of an interest in things so that’s a win!
His new chair finally got delivered the other week which he LOVES. If I’m honest, I think he may love it more than me and Craig. Seeing him happy and playing (smashing everything he can get his hands on) independently is priceless … even if it does involve him manoeuvring every toy he possibly can into his mouth and then lobbing it any in direction. His co-ordination isn’t the best but that’s fine – there’s no rush and I’m confident that he will learn.
My inner cynic can’t help but feel slightly annoyed that it took 20 months for him to be able to have a chair that he can use as a high chair and wonder what his development might be like if he had been able to have it sooner, but hey.
It is so nice that there are aspects of Oliver that we can finally see developing and progressing. Nevertheless, it is becoming more apparent that he has good and bad days with a vast contrast between the two. His absence seizures are still prominent and there are days where he really isn’t with it, in his own world entirely, glazed over and not really responsive. Some days he doesn’t want contact, some days all he wants is to be held. Other times he won’t eat and gag before a spoon or bottle teat has even touched his lips, or he’s a little piggy and can’t down his bottle quick enough.
Most recently, It’s like a switch has been flicked and he’s loving life! Many months have been spent willing and persevering with him to take an interest in things, at times unsure if our efforts made were in vain. He seems to have developed so rapidly recently, almost overnight. We can’t quite believe the positive change we’re seeing in him and it’s the most cherished, overwhelming, rewarding feeling. We are seeing him deliberately happy, enjoying his food, making different noises. He’s been extremely hit and miss with his solids and swallowing but recently has been tolerating different textures and food. This progression has given us hope that a feeding tube may not be an inevitable future prospect.
We’re starting to feel hopeful for the first time in a long time. I’m unsure if this is embracing the half full glass or delusional, but I’m sure time will tell.
Craig and I have been off work this week too which has made a huge difference. Family time is the best time. Even just all of us taking the time to watch a film and be silly together. It’s the simple moments that are treasured.
We took Oliver to the zoo yesterday and the weather was great which lifted everyone’s mood. Oliver wasn’t the happiest sausage and slept the majority of the way around, intermittently stirring from his slumber to give us a death stare, but it’s making memories that counts.
Oliver had a skin & muscle biopsy back in March. After we felt confident his wound had healed and the weather brightened up a bit we took him back to his favourite place – the swimming pool. It was the most wonderful time and it was as if he had never been away! He tolerated a whole 45 minutes kicking and splashing around, looking at the sensory lights and laying there like a King whilst we showered him with the watering can every now and then. If I’m ever fortunate enough to win the lottery the first thing I’m buying is a Hydrotherapy pool!
I’m trying to forget about the medical side of things for the time being and just enjoy the time we’re having together. His most recent MRI results weren’t what we were hoping for (I’ll go into this another time) but we’re learning to focus on him and his abilities rather than what a scan is telling us. We’ll hopefully get his skin & muscle biopsy results in a couple of months too and know more about everything then … hopefully.
There are so many possibilities with Oliver and his conditions, in all honesty we are struggling to keep up. So, we’re trying to be positive and remember that any outcome, positive or negative is exactly that … a possibility. It’s not definite nor confirmed, it’s something that may or may not happen. If you’re reading this and can relate in any way, it is taking a long time but we are slowly learning to have hope.
On the bad days it’s hard, especially when all you can recall from recent months are hospital admissions, appointments, feeding struggles and a miserable child who you can’t console or communicate with how you wish to. But just that one day, one hour even, of happiness or the slightest miniscule development in their behaviour can turn your world upside down in the best way. Oliver is generally a happy child, ecstatic almost,. but when he’s feeling under the weather we sure do know about it and it’s important to stay positive and hopeful particularly during those times.
Hope makes anything possible.