It's a rollercoaster ride

Quick plug for our upcoming jaunt from the Lake District to the south coast of England in aid of Poole NICU.

Willow, Stanley and their friend Oliver spent a total of 385 days in the Neo-natal Intensive Care Unit, so we thought it would be a great idea to cycle one mile for each of those days in order to raise a bit of cash.

We're starting the ride on Wednesday 1st August, and we have already surpassed our target of £5000. That doesn't mean we don't need any more though!


So, if you have any unwanted money, please dispose of it here:

http://www.justgiving.com/RollercoasterRide

Thanks for reading!

Happy Tuesday

Something amazing happened in the Senior household today.

Parents of 'normal' 18 month old children probably wouldn't find it that amazing, but for us it meant the world. Stanley managed to move from lying on his front, up onto all fours, and back into a kneeling position, all on his own. He straightened his back up, and even lifted both of his hands off the floor for what seemed like minutes, but what was probably less than a second.

Even if he doesn't manage to do this again for months, this has given Leela and me a major boost of hope which should keep us going for a long time. It's so much more significant than it might seem to anyone else looking in. It means that firstly, Stanley has the desire to sit up by himself. And secondly, that he can actually do it. He has the strength now to hold his upper body straight with no support. Although it really was just for a fleeting moment, it just shows us that he's got it in him, and with that we can help him do whatever he wants to do.

I just can't imagine how it's going to feel when we see Stanley's face as he takes his first steps (which he WILL do)....

The last month or so has brought with it a fair amount of positivity, in amongst the heart operations and all that malarkey.

A while ago, a speech and language therapist (SALT) came to visit, to look for any particular concerns which may affect Stanley's ability to speak. The majority of people with cerebral palsy are affected in some way in that area, so it's something we've been keen to look at for some time. He is behind where he should be with his speech, but he's got so much else to deal with, it's not surprising. Anyway, the SALT lady could not see any major worry points after observing Stanley for a while, including watching him eat. So that's a good sign - but something we just need to keep working on.

Both Willow and Stanley also had a sight test at the hospital recently. This was an additional one to what they'd normally have, being born prematurely and being exposed to the risk of ROP (Retinopathy of Prematurity). Anyway, they both passed that test with flying colours. Given that my eyesight is officially rubbish (or it was until I had my eyes lasered), we'd expect at least one of them to inherit some of that - but so far, so good.

At the end of May, we went back to Brainwave, for a check-up on Stanley's physical development and to get a new physiotherapy plan. Again, we came out of it feeling positive. The physios said that they thought Stanley had improved quite a bit since the last visit. They also gave us more of an indication as to the long-term prognosis. The feeling is that he will most likely be able to live an independent life; albeit probably mostly confined to a wheelchair of some sort. But even if he is in a wheelchair, to be able to live independently without having to rely on his parents or others for the rest of his life, is a major bonus compared to what so easily could have been.


Another good thing about Brainwave, is the Indian restaurant (The Spice Gallery) just down the road in North Petherton. They have not paid me to endorse their establishment here - but if you're ever in the Bridgwater area and are stuck for curry, check it out. 


Although a lot of focus is on Stanley, Willow still gets an equal amount of attention. She is still thriving in everything she does, and is apparently indestructible. She has no fear whatsoever, and will launch herself into any situation that comes her way. She's basically a mini-Leela, and I adore her as much as I do her mother. Show her a dancefloor, and she will make it her own. In fact, Stanley is quite a mover as well, in his own special way. They seem to have amazing taste in music too. Funny, that. 


Right, all that talk of Indian cuisine is getting me hungry again. I wonder if the Spice Gallery delivers within a 74 mile radius....


  

Hello again, Southampton

We knew we'd have to come back to Southampton General again, ever since Stanley's check-up back in December revealed that he still had a PDA (patent ductus arteriosus), which was not likely to close by itself. 

To put it simply, a PDA is an open duct in the heart, which causes blood to take a different path than what would be ideal. Before birth, all babies have this open duct -which is okay, because they're not breathing yet. Once they're born, it's supposed to close naturally; but in many premature babies, this doesn't happen. Willow, of course, had a procedure to close her PDA when she was about six weeks old and two pounds in weight. That was the most horrific half an hour of our lives. On the consent form which we had to sign, one of the main risks was, quite simply, death. If anything went wrong, it was an all or nothing scenario - there is not enough blood in a 2lb baby to lose any at all. Anyway - it went pretty well, as it turns out, due to the amazing skill of the surgeon. I get stressed in my job as a business analyst (whatever that is - it's more interesting than it sounds, believe me). How these people manage to hold it together to perform tasks like that, I'll never know. However they do it, there must be many cups of tea involved, and a substantial quantity of biscuits. 

For Stanley, the risks weren't anywhere near as great. Rather than cutting into his back and collapsing a lung to get to the right place, he was going to have a catheter in his main artery instead. It's a much safer, more straightforward procedure; however, that really doesn't make it any easier for the parents. The consent form was much nicer - not even a mention of the word 'death' on it - but to see your child being put to sleep and whisked off somewhere for a couple of hours is never a good thing. 

It was a very long two and a half hours. A trip to Costa for our customary hospital coffee helped us on our way; although since we invested in a proper espresso coffee machine at home, nothing can beat the 'Leela-Special-Americano-or-is-it-a-Flat-White' which has got us through the last few months.

The first 90 minutes were spent worrying about the procedure itself, and the next 60 minutes worrying about Stanley waking up. The consultant came to see us after the procedure was done, to tell us it went very well and was pretty standard. But he then mentioned that Stanley's oxygen saturation wasn't too good when they were trying to wake him up, so it would be a while longer before we could see him. 

Eventually, we were taken down to the 'Cath Lab' to see our son in recovery. And there he was, grinning at a couple of young nurses, as he does so well. It was such a relief - we were both thinking the worst, and that we'd have to see him on a ventilator again, and he'd be taken down to PICU. That didn't happen, and it made us so grateful for him to be okay. Every little thing like this still makes us appreciate everything we've got. There are many sick children on that cardiac ward - we are the lucky ones, who only had to go through a relatively standard procedure. 

Stanley was back to his hungry self in no time, and he's staying the night in Southampton with Mummy while I came back home to look after Willow. 

There's been a lot more happening recently in the lives of Willow and Stanley, including another visit to Brainwave. It's too late now though, but I must try and write something about that before the next six weeks disappears.

Therapy ...

We've all been a bit up and down during the last month. Most of the downs are caused by Stanley's disabillity, unsurprisingly.

We're still trying to come to terms with the fact that our son is disabled. Hopefully it will sink in one day, but at the moment I'm still jumping between feelings of denial and sadness. It's all really because we still simply do not have any idea of the long term prognosis. No professional can give us any inkling as to the end result. Obviously this is because they don't really know, plus they don't want to give us false hope or make the situation feel hopeless. But surely they must have some slight idea of where we might be heading. Through years of experience of similar children, there must be at least a range within they can expect him to be. Anyway, being stuck in limbo between the two extremes - ie thinking that either he might end up walking slightly wonkily, or he'll be bound to a wheelchair forever - is sometimes too much to bear.

This time last year, there were no obvious signs of anything wrong. A month later, there was a slight possibility that Stanley may have a very mild case of cerebral palsy. Two months after that, it was more definite, and had moved from mild to moderate. For the next six months, we were thinking it was the mild end of moderate (whatever the hell that means), and no-one gave us any reason to think otherwise. Come January at Brainwave, they told us it was more like the medium to severe end of moderate.

Despite that bombshell being really bad news, we felt so much better. Simply because someone gave us their honest opinion. I know that health professionals are not allowed to give us their own opinion, but it really is the most frustrating thing about it all. Just give us worst case scenario, please - that would be better than nothing. Tell us it's a severe case, then at least anything else will be a bonus.

Anyway, at least Stanley is oblivious to both his parents having their weekly breakdowns, and for most of the time, he's really happy. The rest of the time, he's uncomfortable, not happy and moving in all the wrong ways which we need to encourage him to stop doing. This makes it so much harder to look after him, and it just makes us sad that he can't do things that he should be doing.

So, there's a lot of therapy happening at the moment. Physiotherapy, occupational therapy, hydrotherapy, music therapy, speech and language therapy, hippotherapy. The latter - hippotherapy - is a relatively new thing we're trying out for Stanley, and it has nothing to do with a hippo. It's all about horses, in fact (from the Greek hippos, meaning horse). There's a theory that the therapeutic movements of a horse (or in Stanley's case, a mechanical version of one), can be used during physiotherapy to help strengthen his trunk - which is the part of his body which is most affected, and holds the key to doing stuff like sitting and walking. In other words, everything that you and I take for granted. I'd never realised just how much goes into walking - it's just something that you can do. But when you think about how a baby can go from doing not a lot, to properly walking on two feet in roughly a year, it's pretty amazing. The day that Stanley achieves that goal - assuming he will - will surely be the best day ever.

Other than the obvious physical ailments, Stanley is still winning over everyone he meets with his glorious smile and his cheekiness. He'll definitely have no problem charming his way into anything he needs in life.

Willow, meanwhile, is getting along just as she was. She's really clever, and is ridiculously determined. She's got such an amazing little personality, and makes Leela and I laugh so much every day. We can see already that she'll be helping her brother whenever he needs it. She'll take him his toys, his shoes, and stroke his head. It's so nice seeing them interact, play and laugh together.

When they're like that and we're all having fun, everything is perfect. It's just this stupid bastard niggling little bit of brain damage that is getting in the way of us having nothing to worry about and enjoying every moment as a family.  

18 months and counting...

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.

Errr...hello?

I'm planning to have a spare one and a half minutes next month sometime, so I might write something in here.

'It's too early to tell....'

We've heard that statement more than enough times in the last fifteen months, and it looks like we'll be hearing it for a while longer.

This week, we took our little family to a place called Brainwave in Somerset. Center Parcs would probably have been more fun, but this centre for brain-injured children was where we decided to take a short break. Stanley has been receiving physiotherapy on and off for the last five months, since being diagnosed with cerebral palsy in the summer. Unfortunately, as good as the quality of treatment that the NHS provide is, at only once a week in six-week blocks, it's just not enough.

If we had an infinite money supply, we'd pay for as much treatment as would be beneficial for Stanley to be given the best chance to live a normal life. That's obviously not the case, but we've been looking for anywhere that could help him a bit more. We came across Brainwave, based in Bridgwater, who have extremely good reviews and have been known to work wonders with children suffering from similar issues. Although it's quite expensive, we'd regret it in five years time if we didn't just give it a go.

So we checked in for a couple of nights, and the physiotherapists got to know (and love) Stanley after spending two whole days with him. They assessed him more closely than anyone has yet, and they've given us a daily routine of exercises to follow, specially designed to help Stanley where he needs it most.

We now understand the underlying problems in a lot more depth, which is going to help us come to terms with Stanley's predicament and how we're going to help him get through it. The prognosis is not great. Although no-one can really give us a definite end result, because things can change so much in the next year or so, the realistic outcome for life at this point is that he should be able to just about walk. It's never really sunk in before, mainly because we've never had enough information to be able to understand the severity of his problem. Despite now knowing this slightly depressing prognosis, at least we can get to grips with it and start thinking about how best to make sure that our son is as happy as he can possibly be.

Although Stanley has his cerebral palsy against him, he has everything else fighting for him. Most importantly, he's extremely motivated. Like his big sister, he's a stubborn little fighter and he's not going to let this bastard affliction get in his way. He's so determined to get to toys and objects that he wants, even if it means dragging himself all the way across a room to get it. He's pretty sharp upstairs too - his intellect appears to be unaffected. These two qualities mean he's got as good a chance as anyone in his situation to get the better of it.

The only thing that really matters in life is that our children are happy. Right now, Stanley has no idea of all the fuss that's going on around him. Life inside a body that doesn't work quite as well as he wants it to, is all he knows. So when we see him smiling and laughing, we know he's genuinely happy. It's just when he gets old enough to understand that it will be harder for him.

The outcome could of course be much better or much worse - no-one knows yet. As we've heard hundreds of times before, 'every baby's different'. We just need to do everything we can, which means, at the moment, making sure he's happy and helping him with his daily workout.

Although all the focus was on Stanley during our visit to Somerset, a little girl by the name of Willow didn't go unnoticed. Stanley's sister is amazingly well-behaved for a one year old. She never made a fuss the whole time, almost as if she knew why we were there and she was supporting her brother. She also won over the hearts of the physios, with her mischevious smile and her delightful disposition. We couldn't wish for more perfect children - we just hope they're on the receiving end of some good luck soon.

The end of November

I'm going to start writing more in here. Little and often. Or that's the plan anyway.

Stanley has been amazing this week. He's really starting to crawl, in his own special way. Each of his limbs can move almost normally in their own right, it's just when he tries to coordinate all of them that he doesn't get the desired effect. This can make him very frustrated, uncomfortable and angry sometimes; but this last week he's improved so much. Today, in fact, while Leela was in the kitchen, she turned around to see Stanley's smiling face peeking around the door frame. This is the first time he's ever managed to travel that far from the play room - and it brought tears of happiness to his mother's face.

Willow's also amazing. She's still not walking on her own, but it can't be long now. She spends most of her time destroying things, ripping books off shelves, taking stuff out of boxes, putting stuff in boxes and being a little monkey. Watching a 'baby hospital' programme on TV last night brought it all back. Just over a year ago the docs were working through a list of things to try to basically keep her alive. Each time one option failed, they'd try the next. We just can't believe how well she's doing - just remembering how ill she was; we don't even associate that poor baby with the little girl we see today.

Both Willow and Stanley inspire me so much in everything I do. There's no way they got all this motivation and determination from my side, so I think we all have Mummy to thank for that.

November-ish.

I can't remember when I started writing this. Probably when I had a few spare seconds last week.

Overall, this month has been much more pleasant than the previous November. Last year, it was the time that we hit rock-bottom. Willow had just had her operation and it was touch and go for a few days at least. On Sunday, it was 12 months since she had finally freed herself  from the ventilator, which was the first major step on the road out of NICU. This year, she's very nearly walking on her own. She stood with no support for three seconds yesterday, so it won't be long at all. She's going to be dangerous when she's worked out how to move on two feet, that's for sure.

Stanley's had a really positive few weeks too. His sitting up is coming along slowly but surely. He still can't do it completely without the support of his own arms, but every day his back is getting straighter and stronger. We're just hoping right now that he'll be able to sit up nicely on Christmas Day to immerse himself in wrapping paper. He's now doing physiotherapy and hydrotherapy every week, both of which he's responding well to. It definitely helps that there are young lady physios for him to look and smile at while being floated about in a pool. We were also told by doctors that they're pretty sure he'll be able to to walk without aids. It's the first time someone's actually told us a rough outcome we can expect. Obviously it could still be much worse or much better than that - but this is the 'average' result for a child doing what Stanley is doing right now.

At that same meeting, Willow was effectively signed off - they told us they don't want to see her again (in the nicest possible way). Also, she's now been off oxygen for nearly two months - so hopefully we can now put that episode behind us. We still need to keep it around the house in case she gets ill. However, in the last two weeks both Willow and Stanley have had a bad cold. We were quite worried when we woke up one morning to them wheezing badly. But they managed to get through it without even needing any additional oxygen; in fact, they coped a lot better than Daddy coped with his man-flu.

 

One year and counting

So, a year has gone. On the 24th of September, we celebrated the first birthday of our two favourite little people. That day last year was one to forget in many ways; the only good things to come out of it were, of course, Willow and Stanley. The rest of the day was horrific and frightening.

I occasionally think back to the person I was before that day - an expectant father-to-be, relishing the prospect of the birth of a baby or two and full of excitement about what was to come. At the point when the doctor said those words 'You're having these babies now', all those hopes and dreams were smashed to pieces. Not, of course, due to our children being born, but because they were born fourteen weeks early. Fourteen weeks that they should have been growing and developing in the comfort of their little coccoons. A lot of people still don't seem to understand just how premature that is. I'll tell someone they were born fourteen weeks early and they'll say 'oh right, so you had to stay in hospital for a few days then'. 'Yeah, just a couple of days, until they grew some skin, quadrupled in weight, learned how to breath without the aid of mechanical equipment - you know, that kind of thing.'

It's only been the last few months that we've really been able to enjoy parenthood, despite the cerebral palsy, multiple daily doses of medication, continuing oxygen administration and monitoring. I think, because of all these things, we're appreciating every little milestone even more than we would in a normal situation. And on the subject of milestones, we're getting along very nicely in the most part.

Willow is now crawling - and when I say crawling, what I mean is running on all fours. There is no stopping her once she gets her eye on something at the other end of the room. And that something is always a prohibited object - like a mobile phone, the stereo, a plug socket; anything expensive, breakable, noisy or dangerous. She's also now using a walker to walk without any parental assistance, and is cruising between different items of furniture - all the while nattering away and making funny noises. Considering everything she went through, and the fact that she's only really ten months old - she's doing pretty well.

Stanley's predicament is still holding him back a few steps, as expected. Only in the last few days has he managed to sit up for more than thirty seconds. Today in fact, he sat unsupported for over five minutes; he's still a bit wobbly though, and needs plonking in the right place, but we're pretty confident now that he'll be officially sitting up on his own by Christmas. The fact that he's got CP really does mean that every milestone is even more amazing.

Both the babies have still managed to avoid any form of illness since coming home - mainly due to our extreme strictness with germs and hygiene. We just need to get through this winter without getting any major colds, and from next spring we might start to be able to be a bit more normal and let them get a bit ill now and then. If they were to contract bronchiolitis or something similar at the moment, they'd still be in trouble - Willow especially. They've got plenty of time to build up their immune systems, when they're no longer at risk of hospitalisation.

So anyway, life is good right now - it's never been better, in fact. Willow and Stanley couldn't be any more perfect, and we still appreciate every minute we spend with them. Just wish I had a few more of those minutes each day.