Between every week to two weeks, we have physio through the NHS for Wriggles' cerebral palsy. We also have a rough program to follow in between times, focusing on leg stretches and some work on the pelvis and core. As well as this traditional physio, I am lucky that despite not being able to walk on her own, Wriggles has cruising skills and loves a sense of danger....making the playground an excellent work out! When the weather is permitting we go often, and it really does help as there is also an incentive for her to do things.
One of the great things about the climbing frame is that it gives her the ability to help walk forwards holding on either side. This is definitely one of her weaker areas as her core is wibbly wobbly. If she could side-step and cruise to get around, she would. Actually, if she could crawl she would but she is slowly figuring out that crawling on ice, snow or mud is not as easy as trying to walk. When going forwards with her hands either side on the bars, she tires easily and walks much slower; you can see the poor sausage working hard! She is now a dab hand at her beloved stairs and pulling herself up, although during the latter her legs often get confused and bend awkwardly. Her balance and spatial awareness also get a good work out and the swings help her sitting which of recent has been a bit more unpredictable as a growth spurt has confused her hamstring muscles which impacted on her posture.
And above all, the playground is wonderfully enjoyable and doesn't feel like a chore at all! Even if people assume she is far younger, we don't get as many second glances as I hobble around holding her up, or if we do we're having too much fun to notice.
We've all had our grievances and gripes about the NHS. It can get things wrong, from a hopeless lack of GP appointments to a waiting list longer than your arm, my arm and so-and-so-over-there's arm put together for any appointment not deemed urgent. And as Beadzoid wrote this week, it can get things badly wrong. But today, I just wanted to have a little rave because it also can get things right. And when it works, it works really well and makes a difference to the life of normal people. This morning, we went to a group arranged by NHS community paediatrics in our area called 'Splish, Splash, Bounce'. I am lucky to live near a big teaching hospital with a huge and greatly respected paediatric department that coordinates community outreach exceptionally well. Today we started an 8-week course of hydrotherapy and rebound treatment (physio on a trampoline). It also has some other umbrella services that run alongside this group and if nothing else, is a brilliant resource of meeting parents in a similar situation. The group is especially for babies and pre-schoolers with additional needs, particularly those with physical disabilities from the milder end of the scale like us to the much more severe end.
We went last year, and whilst I enjoyed it and Wriggles loved being in the water, I always felt out of place. We hadn't come that near a diagnosis yet and as she was only a year old I had a horrible feeling that maybe I was imaging things and making a drama out of everything, using her prematurity as a shield. Last year other group members all seemed to have "proper" diagnoses and recognised conditions under the belt. They were all more of a toddler age and their parents seemed so more savvy-in hindsight because they had been dealing with this longer. This year, we are in that position and in the year that has elapsed we did get our diagnosis which in part has made things a little easier in that I don't just feel like a mad moaning woman with "a feeling in my bones" that something is amiss. We have found that secret world of multiple therapies, medical assistance and untangled some of the whats, whys and hows. In many ways, I am still very new and naive to this all. I am still at time struggling to accept, to find where we fit in. But this year, I felt much more comfortable and also more aware of things and in turn, more grateful services like this were on offer to us. Last year, a niggling part of paranoid-me thought they think I'm making it up, they're calling my bluff inviting us to special needs groups to see if I crack and suddenly decide nothing is wrong. Now I have researched more thoroughly, read up more, tried to access more things with varying degrees of success and accepted that my child needs some extra help, and I know all too well that services are greatly strained and really, you don't get offers of things that will not be beneficial! The group is number-controlled so the children don't get overwhelmed and so the physiotherapists can pay due attention to each child. As well as the physios present (in water and on trampoline) there are early years workers whom are like portage workers and people trained in speech & language and occupational therapy. This means that using signing as Wriggles does, does not stand out but is accepted and encouraged and there are people on hand to teach new signs. And some of the group leaders even have an idea what she might be going on about, rather than just waving her arms wildly whilst gabbling! Between the hydrotherapy and the rebound, there is a snack time which for us doubles up as feeding "therapy". All the adults know and understand oral aversion and quietly encourage and support, rather than shoving biscuits in her face and shouting "corrrrr bet you're glad she doesn't eat a million chocolate buttons to rot her teeth like my one!". They offer a mix of snacks to try and explore different sensory reactions rather than trying to be the most organic/healthy/cheapest/trendy buffet as so many of the children have feeding issues. They don't bat an eyelid at giving Wriggles an empty beaker so she can be like the children who can drink. I don't have to explain a thing. It is simply, bliss. Last year I feared I was just a bad parent holding my daughter back. This year, I know I am trying until I am blue in the face but that our road is a bit jumbled up.
I would be happy paying to access a group, so to have it on the NHS is icing on the proverbial cake. It is such a relief to know that there are services to help both child and parents. There are so many stories of children being failed by lack of access to things that when you have a positive experience, like this, it makes you very grateful. We have had our own share of care that ranged from scornful to downright unhelpful and so opportunities like these make up for it a bit. It is also a reminder that the NHS should not just be viewed as a luxury. It is the National Health Service, not an add-on. Without it, millions of people would be left to flounder in both development and health. The NHS is not just about hospital procedures or primary care trusts, it is about making the lives of people more comfortable and facilitating Independence. It is about support as much as treatment. And today, it got things just right. ....and in true NHS fashion, I just recieved a letter through the post for our next respiratory follow up. Despite our consultant wanting to see us in under three months time, we cannot have a slot until June and even then they can't gurantee us seeing our resignated consultant. You win some, you loose some...sigh.
We have spent a fair amount of time hanging around in hospitals. They are tiring places. When we escape, people often expect us to be serene and well rested. Well, Wriggles might be but I am normally frazzled! Getting back into the swing of life can be a bit of a chore when you just want to curl up on the sofa. Luckily right now we are going through a good patch, after most of April being on the nasty and testing side.
Reasons why being in hospital is wearing:
1. They are normally either quite hot or freakishly cold. Assuming it is the former, then after a few days of smugly marching around in shorts and flipflops, you feel unnaturally sleepy due to oppressing heat and lack of fresh air. You feel permanently dozy and of course the minute you drop off, the doctors will finally start their rounds.
2. Well would YOU like being a zoo exhibit? Even if you are lucky enough to be in a cubicle, there are continually people charging in and out. Many for good reason but this doesn't make the utter lack of privacy any less infuriating. Like the above point, if you dare the lock the bathroom door to get dressed or go to the toilet, you will miss the one meeting of the day you have been waiting for. Just to enhance all zoo-like feelings, the nurses like to point all equipment with reading to face the corridor and nurses station. Although this is useful for them, it does mean that every bugger who so much as saunters past will goggle into your room.
3. Whoever got a good night's sleep a) on a camp bed b) without a proper duvet c) with people banging in and out every few hours to administer drugs and record observations? Who knew so many things could go beep?
4. If your child is connected to a series of beeping equipment, the likelihood is they are quite poorly. That is worrying for you. Even if you know they will be fine, it does not take away from the fact you are anxious, worried, scared and exhausted from all these. You might also be angry with you know, life. These intense feelings are energy sapping. And don't say relax. That is neither helpful nor possible.
5. Recounting medical histories approximately 6532971 times in one admission really addles your brain to the point you are convinced you are wittering gibberish and must have made some of it up. If there are bad memories attached to said histories, it is quite probable you will struggle with confronting these on a daily, often more frequent basis.
6. Lack of nourishing food. I am yet to come across a parent who ever consumed their five a day whilst in hospital, without outside catering and a bottomless wallet. The main food groups for your duration are caffeine (plural), sugar, carbohydrates and whatever looks least congealed from the canteen or food trolley. You also loose track of meal times for yourself and either end up having dinner at 10pm after finally settling a poorly child to sleep and meeting the night shift before being able to briefly sneak out the ward or get to 10pm and fall asleep.
7. While your child naps (if they are able to) or is knocked out by drugs, a popular past time is reading. If you can read the 300 page intellectual book in your bag, you may come from another planet. Often the only reading matter available is out of date gossip magazines or children's books. Neither of these are horrendously problematic but do have a tendency to turn your brain to mush. After the last stay I had, I had re-read two Jacqueline Wilson stories and knew all the names of The Only Way Is Essex cast, which I have never before or after watched. I have not been able to concentrate since on a grown up book as my reading age and attention span has plummeted.
8. It is exhausting trying to cheer up a (justifiably) whining poorly child. They will require your undivided attention and total love. In return for reading and re-reading their favourite book about 400 times in an hour, they may share their virus or vomit down your last clean t-shirt. On rare occasions, they fall asleep on you rather sweetly.
9. Cabin fever is unavoidable. Paediatric wards are not babysitting services. If you would not leave an 18 month in her cot whilst you popped down to the supermarket, you cannot leave them here to go for a walk. Obviously if they are (fast) asleep or you can collar a play nurse, friend, partner, relative or gain permission then you can escape temporarily. Key word: temporarily. However, the over priced coffee shop downstairs never felt so liberating. You do feel like you have mislaid a limb though. The only solution I have found is to hum the Muppet Treasure Island 'Cabin Fever' song to lift spirits:
10. Worried relatives and friends expect constant updates to save them from worry. If you are unlucky, this can spark off unkind words when someone criticises you for leaving it over 12 hours or longer between something happening and you knowing. Managing family politics ontop of everything is not for the faint hearted. Telephone trees are ideal for stressful situations. So is compassion to yourself: right now, focus on the moment. Everything else can wait. Except sometimes it doesn't. If you are struggling, do ask for help. Fighting friends can fall over themselves to keep the small stuff ticking over if it helps. It doesn't make you any less brave to accept kindness.
I am eternally grateful to all medical staff and this is not intended as any form of criticism of the NHS or hospital protocol.
As well as large and vital charities like Bliss among others, many neonatal units up and down the country have their own smaller charity attached that supports both the unit itself paying for medical equipment ontop of the NHS budget to ensure the units remain cutting edge, contributing to research projects, looking after parent and family welfare, paying for extra staff and providing support for the families be they in for a day or 6 months.
My local neonatal unit is at the Royal Victoria Infirmary, Newcastle-upon-Tyne. Ward 35 houses the intensive care, high dependency and special care rooms that make up the unit. It cares for over 600 babies a year born anywhere in the Northern region and at any one time can take 34 babies. It is one of the bigger units in the UK and last year, won the Big Heart (by Mother & Baby magazine and Bliss) award for Neonatal Unit of the Year; not a prize taken lightly when you think of all the fantastic units that save lives every single day. It is by sheer luck that it is my local unit. After university, I applied for jobs liberally and it just so happened my first offer was in my university town of Newcastle so there I stayed in a city suburb, before my daughter came along very prematurely in a matter of a few months. Because of the size of the unit and the specialist Intensive Care it provides, it meant we did not have to be transferred, potentially many, many miles away like many families.
