So, it's been a while since the last post. Spare time is one thing I just don't have anymore - but that's probably a good thing. I only ever used to waste spare time anyway.
Since the start of the year, things have generally been on the up in the Senior household. Along with Stanley's cerebral palsy, the main focus has still been to keep away from germs and illnesses for as long as possible. Our aim was to start being 'normal' from the end of this winter. (By 'normal', I mean interacting with other people, going inside public places, not dipping the children's hands in alcohol gel every time someone brushes past them, that kind of thing...)
Willow was still receiving synagis injections until February. These are to give protection against a bug called RSV. To any normal adult or child, this would just manifest itself as a bad cold - but to a baby with chronic lung disease, or those with a history of lung problems, it can be much more serious. The images of Willow's last lung x-ray back in October 2010 are still etched in our minds, and will probably stay there forever. It's not worth the risk of having to go back through another hospital stint.
So, we managed a whole year since the release from hospital without having to go back in; no-one in NICU would ever have believed that if we told them that last February. If anyone was a dead cert to be re-admitted, it would be Willow. It just so happens that Willow is the most amazing little girl we could ever wish to call our daughter, and she's not going to let anything like that happen.
As well as keeping healthy, Stanley's physical development is still a main priority at the moment. Since our visit to Brainwave, we've been doing a half-hour physio routine with him six days a week, along with general physio throughout the day. He seems to be responding to it really well - and has been noticeably much happier since it started.
He still can't sit up unsupported. Our target of being able to sit up by Christmas was wholly unrealistic, it seems. We'll now be happy if he can do it before his second birthday. The rule of thumb is, if a child can't sit independently by the time they're two, they won't be able to walk. This is the 'corrected' age of two - so Stanley does have until the end of the year, but we're hoping it will be sooner. It's getting to the point now where he's just too big for us to be plonking him on the floor in a lying position. He should be sitting up, or even walking, like his sister. This makes it so much more difficult to look after him. People often say 'at least you haven't got two of them running around in opposite directions then...' like that's a good thing. Actually, it would be a million times easier if that were the case. I just can't imagine how amazing it would be to not have something like CP to worry about.
The thing is, if neither of them were affected in any way, I know that I wouldn't appreciate how good we had it. In a way, it's only by having a child with a condition like Stanley's that makes us realise just how lucky we are as it is. I just keep thinking, it could be so much worse.
But some days, it all just dawns on me again - that Stanley is disabled, and he always will be. He'll need physio every day for the rest of his life. I just wish I could take it all away from him.
Despite all this, we just take every day as it comes. There's no point dwelling on how things may or may not turn out - we just have to do everything we can to make sure he's as comfortable as possible and the outcome is the best it can be.
We all have a lot of fun together, and make the most of every minute of every day. One thing's for sure - it's exhausting being a parent, and I'm only an on-duty one for a couple of hours a day and the weekends. Apart from the small issue of our son having a still-to-be-diagnosed form of quadriplegic cerebral palsy - everything is perfect right now.
Since the start of the year, things have generally been on the up in the Senior household. Along with Stanley's cerebral palsy, the main focus has still been to keep away from germs and illnesses for as long as possible. Our aim was to start being 'normal' from the end of this winter. (By 'normal', I mean interacting with other people, going inside public places, not dipping the children's hands in alcohol gel every time someone brushes past them, that kind of thing...)
Willow was still receiving synagis injections until February. These are to give protection against a bug called RSV. To any normal adult or child, this would just manifest itself as a bad cold - but to a baby with chronic lung disease, or those with a history of lung problems, it can be much more serious. The images of Willow's last lung x-ray back in October 2010 are still etched in our minds, and will probably stay there forever. It's not worth the risk of having to go back through another hospital stint.
So, we managed a whole year since the release from hospital without having to go back in; no-one in NICU would ever have believed that if we told them that last February. If anyone was a dead cert to be re-admitted, it would be Willow. It just so happens that Willow is the most amazing little girl we could ever wish to call our daughter, and she's not going to let anything like that happen.
As well as keeping healthy, Stanley's physical development is still a main priority at the moment. Since our visit to Brainwave, we've been doing a half-hour physio routine with him six days a week, along with general physio throughout the day. He seems to be responding to it really well - and has been noticeably much happier since it started.
He still can't sit up unsupported. Our target of being able to sit up by Christmas was wholly unrealistic, it seems. We'll now be happy if he can do it before his second birthday. The rule of thumb is, if a child can't sit independently by the time they're two, they won't be able to walk. This is the 'corrected' age of two - so Stanley does have until the end of the year, but we're hoping it will be sooner. It's getting to the point now where he's just too big for us to be plonking him on the floor in a lying position. He should be sitting up, or even walking, like his sister. This makes it so much more difficult to look after him. People often say 'at least you haven't got two of them running around in opposite directions then...' like that's a good thing. Actually, it would be a million times easier if that were the case. I just can't imagine how amazing it would be to not have something like CP to worry about.
The thing is, if neither of them were affected in any way, I know that I wouldn't appreciate how good we had it. In a way, it's only by having a child with a condition like Stanley's that makes us realise just how lucky we are as it is. I just keep thinking, it could be so much worse.
But some days, it all just dawns on me again - that Stanley is disabled, and he always will be. He'll need physio every day for the rest of his life. I just wish I could take it all away from him.
Despite all this, we just take every day as it comes. There's no point dwelling on how things may or may not turn out - we just have to do everything we can to make sure he's as comfortable as possible and the outcome is the best it can be.
We all have a lot of fun together, and make the most of every minute of every day. One thing's for sure - it's exhausting being a parent, and I'm only an on-duty one for a couple of hours a day and the weekends. Apart from the small issue of our son having a still-to-be-diagnosed form of quadriplegic cerebral palsy - everything is perfect right now.
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