Splish, Splash Bouce

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.

Quavergate

So we're coming to the end of the first week on our whizzy new high calorie potion, Paediasure Plus. If I can find the strength enthusiam will time, then I may take Wriggles to the hallowed Baby Clinic for a weigh-in next Tuesday to see if it may be working. Then again I may not seeing as she spent the best part of a week drinking next to nothing, let alone eating. And the eating bit is not yet back on track. We are back to what I refer to (mainly to myself; I am getting quite used to having inner monologues) as Quavergate.

Wriggles really likes Quavers.

(I have developed a new tolerance for Quavers as a result.)

It helps if they are proper Quavers too, rather than own brand Cheesy Curls or whatnot.

Quavers first came into our life as one of the many helpful suggestions from other parents when no one medical was taking us very seriously that at nearly a year old, my child was still eating nothing and have seemingly developed cutlery-phobia even if I was the one using them for me. I appealed to the wise people on the Bliss message board community and received some very reassuring responses and suggestions of things to try. Melt-in-the-mouth type snacks, whether your earth-mother-friendly Organix type no-salt-sugar-additives-flavour-guilt-free puffed carrot sticks, or the more common Quaver, Skips or Wotsit were suggested to help her oral skills and give her something to hold, if she so wished. She didn't. There was one blissful moment of curiosity just before her first birthday, never to be repeated for months. I didn't forget though, and made sure my cupboards resembled a well-stocked Asda just in case she ever felt tempted by anything that wasn't out of a bottle.

Around a year corrected, teething was immensely helpful. I don't think you hear that phrase very often. I do believe though, that as well as general development, accumulating trust, etc, that the desire to gnaw generally anything not nailed down to relieve her poor gums, really did help. Because suddenly the very small circle of things that she would mouth (her fingers, my fingers, the tip of my nose, her dummy, Christmas Hedgehog's nose, Mouse, her favourite rattle but not any other rattle, rattly Frog's leg) expanded to include other rattles, books, toes, blocks, the edge of a cushion, paper, cardboard, bath toys and BREADSTICKS. Hallelujah! Although she didn't swallow or 'eat' them, she did chew on them which marked our first real breakthrough in anything not related to fromage frais.

Then, at around 13 and a bit months corrected we started going to a hydrotherapy group for early years run by our physio and some of her colleagues in speech therapy, social work and education. After a hydrotherapy session in the pool, there was snack time. They put out some very baby un-friendly (Annabel Karmel would recoil in shock) such as Quavers, pink wafers and cake as well as banana and fromage frais pots. These foods were specially picked as they are particularly good for developing oral motor skills, especially as every child attending has some level of feeding problems. Week by week, Wriggles slowly consented to touching, then holding, then licking and then tasting. It wasn't until about the last week at around 15 months corrected that she ate one, which was massive cause for celebration. SALT were very pleased too, as it proved that she could develop the motor skills which boded well for the future.

For a while she ate nothing but Quavers.

Considering she ate very little anyway and still battled with reflux, this wasn't super news.

I was over the moon she was gaining in curiosity about foods (well, one food) and branching out, but was a little concerned that Quavers contain very little nutritional value or many calories. Weeks dragged on. It felt like years. If I withheld the Quavers, she ate nothing. Not even a fail-safe fromage frais. Bitterly I recalled the SALT wittering on "Oh try Quavers, they're great at developing feeding skills." I'll stuff you full of Quavers, you silly old bat, I thought. Quavergate was in full swing.

Of course, in true baby style, just when I was teetering on the edge of complete despair, considering sending hate mail to Walkers and wondering if I would ever be able to start a meal without a little yellow foil bag, then she suddenly ate a whole petit filous, tried some fruit puree, wolfed down some custard and sucked my hot cross bun (not all at once. That is the stuff of dreams, dear reader).

I know now that Quavergate #2 is a shadow of it's former hold. She is still recovering after feeling grim; today is after all the first day in a week where using the inhaler hasn't been a necessity. We all, adults and children alike, feel horrid after being poorly and can eat atrociously. If Quavers are her comfort food and give her a sense of Independence, who am I to argue? They are after all, 88 calories per bag versus 64 calories of the Organix Goodies range. Those 24 calories sound ridiculous, but in our quest to stay on the same line on the dratted growth chart, I will take those 24 thank you very much. I might even have them with added Quavers.

Star Patient

A proud moment today as Wriggles crawled onto the trampoline at our rebound therapy session and her physio Jemma exclaimed she was her "star patient". This is brilliant news and such a boost, after more weeks of food refusal and a bug creeping in. Although Wriggles is the most able member of the group, it is still lovely to hear that other people are just as proud as me and see ever little change as a huge cause for celebration. The extent that the hydrotherapy lessons have helped Wriggles explore her legs and strengthen her torso and core muscles has surprised everyone.

Hydrotherapy

Well, I have dragged out from the abyss that is my Spare Sock Drawer (a drawer full of holey, odd and threadbare socks and baggy tights and unsuitable pants For Emergencies Only-we all have one don't we....don't we????) my swimsuit, untouched for years, and laid it out ready for tomorrow. I have bought a miniature swimsuit from the Wriggly one (actually I've bought two as she is sort of between sizes and I didn't fancy the parade of getting a baby to try on a swimming costume in the changing rooms, that hates getting undressed/dressed at the best of times. Also, I don't think the Newcastle is yet ready for my tuneless rendition of Old MacDonald/Wheels on the Bus mash up, which at present is the only way to soothe said screaming not-so-infant) and even found a spare towel. Because tomorrow starts a round of hydrotherapy.

I am a bit nervous.

I suspect the last time anyone saw my legs outside encasing of jeans or woolly tights was probably slightly under two years ago. The last time someone saw me in a swimming costume, god help them, was errrrr quite a bit before that. I did go swimming* as a student and Wriggles has baths on a regular basis, but we are yet to brave the waters together. I am slightly nervous about dropping a slippy baby. I imagine it will make a very poor impression. Last night we had a "trial run" in a very deep bath. Wriggles was quite skittish at first but didn't hate it which bodes well. I am more nervous about catching the correct bus in the morning as we (well, I. It is definitely my fault) are pathologically late for everything, and also getting on said bus as the bus drivers in my area have a vendetta against pushchairs. 

Apart from that, it should be grand. Hydrotherapy is essentially a very warm swimming pool, around body temperature I think, to do exercises in and help decrease muscle tone and increase muscle strength. (Hydrotherapy is also a bit like colonic irrigation-but that is a different kind and one I definitely hope we will not be subjected too) It is said to help with a vast range of ailments and conditions and help build up physical strength. Hopefully also relax slightly stressed mummies! Wriggles has had regular physio since about 32 weeks gestation, still in an incubator in SCBU for Froggyitus**, a common prem condition, and continues to have it as her development is a bit erratic in areas. 

We are very lucky in that our community physio team is very proactive and the two physios we have seen have been utter sanity savers. Not only patient, but also very informative and willing to spend that extra bit of time explaining things and answering all of my pestering questions and deciphering doctor terminology. I like the more holistic approach they take also, rather than "Oh I'll just transfer you to so-and-so....." and they way they are willing to chase up other people!

It was a surprise, mostly pleasant, to be able to access hydrotherapy. They do a Pre-School Program which at just shy of 18 months Wriggles is now eligible for. She shows signs of high muscle tone as well as Chronic Froggyitus and still is not able to bear weight even with support for more than a millisecond. Neither I nor our physio have doubt she will get there, but given there was a place, it was deemed A Good Idea to go for early intervention and try and kickstart some mobility and increase her physical strength, which is lacking in the lower limbs.  It just feels a bit weird to have to go along to these things. We had such a relatively easy ride in SCBU that the aftermath was a rude shock and I still have a surprise every time I am reminded my baby has some delays and slowness in development that either could or could not be significant in some shape or form. Like many other things, you never expect it to happen to you. It hasn't stopped me worrying about the future, but I am grateful for the present, which I think she is doing very well at!

I may craft some medals out of left-over chocolate money to get into the Olympics vibe...

*this is a bit of an exaggeration. The swimming pool near my friend's house did a "Swim Disco" on Friday nights were they stuck on lights, music and a mirror ball and opened up the Sauna. I would do one or two lengths and then me and my friend would stick in the sauna gossiping until our skin felt fried and we escaped to the pub.
**NOT a genuine medical term, but when said prem splays limbs out like a mad frog. Premature babies lack the ability to work against gravity, meaning that they cannot move between the stretching out and curling up positions. This is why positioning is so important, especially in the early days. It recreates positions in the womb, rather than letting the baby lie in a heap which is not very comfortable and will add to muscle tone problems.