Blog 18: It's all about the micro

So, Keneoue has bounced back with the help of Amoxicillin. The diarrhoea and sickness has stopped, and she’s even been quite feisty in her demands for food. Encouraged, I decided it was time for her to have a proper square meal and Sylvia blended her some rice, fish and vegetable soup. It’s amazing that with all the hazards Keneoue has faced she’s made it this far on milk and porridge. She’s a tough one for sure and seemed to enjoy having something a bit more substantial for lunch, if a little surprised by it.

She still fighting some flu, virus thing, which is going around, and many of us have fallen victim to. I have been trying to encourage the children to cough in their hands, or their elbow, but since many of them can’t control their hands, arms or heads, this is a major task for them to achieve. Lesojane has had a terrible cough and been off school all week, and is unable to bring his arm to his mouth, however much he tries. He has still been keen to come to physiotherapy, and tries so hard to accomplish the small tasks he is given, that I have brought to physiotherapy to him and had a few sessions in house 5. I realise how much it means to him when I come to the house and find him trying to use a washing up bowl, which has been left on the floor with clothes in it, as a therapy ball. Laying across it with his limbs waggling about in the air, doing some sort of swimming strokes.

His reach and grasp control has improved a little, but it’s going to be a long road if he ever is to control a spoon and feed himself. Masela can now do that with the aid of a special spoon with a large handle and an anti-slip mat (thanks Helen for another daring raid on the ward). Unfortunately, this morning I discovered that Masela can’t use a pen. Inspired by the spoon idea I thicken a pen by wrapping string around it, but it doesn’t work too well. I find that she is unable to identify the letters of the alphabet, or which ones make up her name. Such are the hazards of overcrowded classrooms.

I task Sylvia with trying to teach Masela some basic letters. Sylvia is the young albino lady who is helping me as a physio assistant. She is smart and speaks good English, but like myself, is not blessed with patience. We are both improving in this area with the fortitude needed to work with some of these children and constant repetition of tasks. It’s a working progress.

There are a number of albino staff and children at the orphanage and their skin colour can make a tough life even harder. Stigmatised in Lesotho, and in many parts of Africa, albinos suffer abuse, attacks, and are even murdered. If that wasn’t enough to endure, they are vulnerable to skin cancer, many can’t afford to buy protective cream and they usually have poor eyesight. Mamello has helped to set up Albino link as a support system and a community that provides employment and schooling for them at Phelisanong.

Anyway, Sylvia has done such a good job helping to feed Keneoue, I’m sure she can cope with the alphabet and Masela. Both she and Malineo probably didn’t realise how all-encompassing being a physiotherapy assistant would be, from being a teacher, building furniture, feeding children with swallowing difficulties, being a care giver and all round entertainer, besides all the usual stretches, strengthening exercises and use of mobility aids. With few resources, it’s all about multi-tasking and using your ingenuity. Having two willing assistants has made such a difference in the number of children we have been able to help and hopefully will sustain things after I have left.

Regarding the more traditional physiotherapy elements, the kids are going great guns. Kolosoa and Tokiso’s first hesitant steps on the posterior walkers I brought out with me, have now evolved into all out wacky races down the path. Both boys determine to overtake the other, shouting and laughing as they engage in Ben Hur type tactics, trying to win. Thanks again to those who gave donations towards the frames and helped in adapting the wheels.

Tokiso has also achieved his dream of walking to school after only two weeks of training. It does take quite a few rests and the assistance of one to guide his frame over the rough stones and down the hazardous slope between the school blocks, but he gets better every time he does it. I think the only way he could manage it independently, would be on crutches. There is an older boy here who is diplegic and uses this method, so I am encouraging Tokiso to strengthen his upper body, and improve his balance, so that one day he might be able to do the same.

Other children have also joined the walking brigade, up and down the path between their house and the physio room and across to the school, holding the assistant’s hands or using the small children’s Zimmer frames sent down from Saint Angela’s last year. They are all making progress in their own way and it’s amazing what they’ve achieved in such a short time.

I wish I could say the same for the health of the country, but there has been a serious setback in the vaccination program over the last couple of weeks. When I was at Saint Angela’s I was impressed one day when all the young children, with their mothers, queued for hours to get their measles vaccination, as they did all over the country. However, it turns out this vaccination had not been tested and has resulted in serious side effects. The hospitals have been over flowing with extremely ill children from this life-threatening event. It has been a tragedy for the children and families effected and caused a huge political storm. After this who would trust their child to be vaccinated again, or put their faith in the ministry for Health.

Sometimes when you are faced by such mal practice, and laid low by a virus yourself, it’s hard to hold onto the conviction that your efforts are worthwhile, or will help change things. The government here has been a disaster since the last coup and caused many aid organisations to withdraw from the country. However, as my Canadian friends tell me, there are good things happening, and Phelisanong is one of these, building a community with a skill base, which hopefully can become a hub for spreading ideas into the surrounding area.

The week ends with goodbyes to Christina and Jeff, who have done such a great job helping the school with supplies, sorting out the chaos in the library and running music workshops. We are privileged to watch the children put on a show, singing and dancing, the boys kicking up a storm with their traditional gumboot dance on the dusty red earth. I feel reinvigorated by the ceremony and more able to focus on all the positive things that are happening around me. You just have to keep the faith and move forwards, one small step at a time, it’s all about the micro, not the macro.   

    

   

Blog 17: Building headaches, miracles and prayers

When I agreed to try and come up with a proposal to spend some bequest money left for Phelisanong, I did not anticipate the epic proportions this task would involve. I had some idea of a physio house, instead of the cramped corner I am trying to operate out of, with maybe a playground in front of it. I was surprised last week when I was told the builder had come to see me. I presumed that I just needed to point out where this building might go, the chosen spot being the site of the old broken swings.

Somehow, as we tramp around the site at Phelisanong it becomes a two-phase plan. Phase one consisting of three different projects, in an attempt to make Phelisanong a flat, wheelchair friendly, site. Presently, the access to the school building is probably most suited for skilled motor cross riders, with the path an interesting slope of about 60 degrees, between two of the classroom blocks, with a brick wall straight ahead for those who lose control. Not surprisingly most of the wheelchairs have disintegrated while trying to negotiate these perils and only a few battered specimens remain.

“Make it flat” I say to Mr Chalabala, the builder, at least hundred times as the scale of the hazards becomes apparent. At the end of tour the brightly smiling Mr Chalabala agrees to make three separate quotes, for the three different projects of phase one. When this comes back the next day, it is one large quote for all the labour costs, none of the material costs are included and there is no mention that the physiotherapy house will have any doors or windows. He returns at the beginning of the week and we go through the whole process again in the midday sun.

The quotes and ambitions of the project ebb and flow, until finally we agree we should keep it simple and limit it to just a physio house and a bit of path for access. I feel a great sense of relief and there is a photo call on the patch of land where the physio house will be. The smile on my face freezes when Joel (the finance officer) says that Mamello has asked if we could move it to the right, to give her a view down the valley from her office. Such a move would greatly increase the cost, as it would entail levelling the slope which tails off on that side.

As the finance officer, Joel, can fully appreciate that views come at a price and I leave him to break to news to Mamello. So, the next day I am due to meet Mr Chalabala in a hotel in Leribe to get his quote. It’s a very hot day, added to by the fact I am sitting next to a pizza oven, but I am too hot to move to somewhere cooler. Mr Chalabala arrives without the quote and says we should go to the builder’s merchant to get the prices of materials. I tell him this is not a good idea and I have never had any interest in bags of cement or sand.

I buy him a beer instead and we go through the list of materials again and add various items which might be useful like lights and door frames, until I lose the will to live. Mr Chalabala finishes his beer and goes to the builder’s merchant without me and my lift arrives to take me home. 

On the way back we pass by Mr Chalabala's two story house, built by him and still standing, which I feel is a good omen. He returns the next day with an itemised quote, three pages long, for all the materials needed from Hard Ware City. I am impressed and start checking through the list and immediately spot a discrepancy on page one, “Four double sinks? I said only a single was needed.” Hard Ware City seems to have got a little carried away with the plumbing of the physio room, while forgetting to cost the sand or concrete at all. We finally come up with a definitive list which Mr Chalabala takes away again for Hard Ware City to amend.

The last building project I was involved in was over thirty years ago, in the North West Territories of Canada, when I was helping a builder construct a log cabin (it’s a long story). Unfortunately, he had to go to Winnipeg and never returned, leaving me to learn how to use a very large chain saw and build a dozen walls on jigs, 15 logs high. Good job I had the whole summer to do it. With that experience in mind I have now gone for a much cheaper option of upgrading the present physio room and bought hammer, nails, sandpaper and cups in an endeavour to achieve deluxe status.

I already have a saw with me and decide to use it, along with my other tools, to strengthen table legs, bang in the nails that stick out, sandpaper the splinters away, raise the plastic table, which is too small for the older children to get their legs under, using the cups, and reorganise the space so I have at least an area the width and length of a small child, in which they can lie down and do stretches. Before that I turn my attention to House 8 which has the most disabled children in.

The most powerful weapon I have in my arsenal is my new hammer and put it into immediate action to hang the colourful ribbons that I have brought to hang from the roof of House 8. Even armed with my hammer there is still a problem with the central hanging point for the ribbons, which is eventually solved with a large piece of bubble gum to stop it coming off the nail. I amuse the care ladies for about an hour with my decorating efforts, but the final effect is quite pleasing. 

In the afternoon, the physio room get the DIY treatment. The cups I brought are too small for the plastic table, but Malineo and Sylvia improvise with peanut butter containers, earth and carboard, producing an instantly height adjustable table. I relinquish my hammer to Mahali, a man who will turn his hand to anything, and has made a small table for the Lecky corner seat, out of rough pieces of wood hammered together with a stone. Together we improve on its rustic appearance and texture, producing something more stable and almost Ikea like, if viewed in a certain shadowy light.

Who needs 250 bags of cement, 3 loads of rough sand, 3 loads of fine sand, 6 aluminium windows, 2 double doors, roofing sheets, bricks, tiles, pipes, wiring, blah, blah, blah… Anyway, I don’t have to meet Mr Chalabala until Monday so can turn my attention to all things physio until then. Friday morning starts in House 8 as usual, helping with breakfast. It is in this house that Malineo has performed a miracle with Lithapelo, the most difficult resident to feed in the whole of Phelisanong (see blog 6)

For 25 years, this girl has been fed on her back. She gags and splutters as her jaw goes into extensor spasm and her tongue thrusts out. She has flexure contracture of her limbs, windswept hips and a rotated trunk. Last year I decided the best way to feed her upright was  in a large pushchair, which has a bolster between the knees. With additional padding this arrangement was just about able to retain her spasms. However, there has been some backsliding on this method and once again I catch the house mothers feeding her on her back, covering her mouth with a rag to avoid getting sprayed with the food she spits out.

With Malineo’s help, I began the whole procedure again, it needs two of us to feed Lithapelo’s and assist her jaw to close. After a few days I left Malineo to battle on with the help of a house mother, while I dealt with other children. I noticed at the beginning of this week that Malineo was feeding Lithapelo alone, and go to help her. Lithapelo opens her mouth and automatically I use my hand to support her closing it. Usually this takes quite an effort, but hardly any is required. Puzzled, I do it again, using just one finger, then realise that Lithapelo can do it without any assistance at all, and has also  stopped gagging and spraying her food everywhere.

Malineo doesn’t need any help at all and I stand back and watch. She has found a screw on table, which comes across the front of the chair, stopping Lithapelo from squirming out of it. She also has the patience of an angel and lets Lithapelo go at her own pace, anticipating her spasms, and constantly adjusting the support padding to get her head in a good position. This gives Lithapelo more control and consequently she is more relaxed which reduces the spasms. I try to tell Malineo what an amazing thing she has done. She smiles embarrassed and carries on feeding Lithapelo. I am left to marvel at this unassuming lady and the transformation she has made to one girls life.            

    

After Friday I am feeling that things are going quite well, the boys are getting much stronger with their walking and Marsala’s reach and grasp and head control has come on miraculously in two weeks. The only blip is both she and Lesojane have been sick the last couple of days and because they and the more able children go to school I can’t do as much physio as I want to with them during the week. When I come in on Saturday it’s an opportunity to do a lot more, but first go to House 8 to see Keneoue, who was not so good on Friday, coming down with a cold and diarrhoea.

I struggle to get her to drink any milk and when I change her nappy find she has had more diarrhoea and her skin is paper thin, drawn tightly across her sunken belly. I don’t think her body can weigh more than 7 pounds. I manage to track down some rehydration salts, detail Sylvia to go to the kitchen, get some boiled water, sterilise a bottle and make up the salts. Over an hour passes to achieve this feat and cool the water down, in which I over ambitiously try to run a physiotherapy session with and Malineo half a dozen children.

It is completely bonkers, but what can I do when I go into house 5 and they are all desperate to come. Mthimokholo is standing at the door as I go in, balancing precariously with his arms and legs akimbo (he is ataxic with learning difficulties). “Mme Jan” he shouts with delight, falling into my arms and dribbling all over me. By the time Malineo I have staggered up the path with the children to the physio room, with the various walking aids they use, most of them need to go back to the house again to go to the toilet. Anyway at least they achieve a fair amount of walking.

The water cools and I go to try and get Keneoue to drink some. It’s impossible, she is coughing with all the might her fragile body can manage. After half an hour of getting nowhere I ask the head house mother to come and tell her Keneoue must go to hospital and go on a drip. She is dangerously dehydrated and simply too weak to cope with diarrhoea and a cold. Keneoue is lying motionless with frothy white saliva on the pillow and the house mother calls Mamello, who immediately sends a vehicle to take her to hospital.

Little Keneoue with the misshapen head, who nobody wants, not even the hospitals, which is why she has been brought to Phelisanong. Here though, there are hazards all around, germs that her weak body can’t fight. I’m amazed that she’s made it this far and pray that she will win this latest battle she faces.             

Blog 16: Heads

There are around 180 children at Phelisanong and amongst these, a great variety of head shapes and sizes. I thought I’d seen every kind there was to see, until I came across Keneoue. This little girl arrived a couple of days before I did and when I peered into her cot I was shocked. All I could see was a spherically shaped skull with a bulbous forehead which looked like it had been crushed with a meat cleaver, a furrow going right down the middle of the crown.

She was obviously very sick, with weeping pink bed sores on either side of her head. Apparently, she had spent nearly all the 19 months of her life in hospital, until last week she was discharged and sent by the ministry of Social Development to Phelisanong. Her poor health resulted in her being taken back to hospital and put on antibiotics. When I heard that a child had died on Sunday I felt sure it had to be her, but I wasn’t. She returned at the beginning of the week looking much better. Her brown button eyes were open and seem to be amazed at the world she now found herself in.

Keneoue means gift, but that name can’t have been given by her parents as she has been abandoned. There are hardly any details about her and it is unknown whether her ailment is an accident of birth, some genetic defect, or an operation that has gone horribly wrong. The staff are reluctant to pick her up, and feed her by squirting milk from a syringe into her mouth as she lays in her cot.

I look into the cot as I pass by one morning. I have taken to starting the day in the house with the most disabled children, where Keneoue now lives. Somebody has put a bottle by her side which she can’t possibly drink as her hands are tightly clenched into fists and she is unable to suck. I take a deep breath and decide to pick her up. Her head must weigh nearly 50% of her body weight, making it hard to support. Her body is ridged and only the size of a small baby, and slowly I manage to bend her knees and sit her on my lap.   

I can sense everyone is watching me, waiting for something calamitous to happen, and I try to appear more confident than I feel. I pick the bottle up and slide the teat into her mouth and gently press her chin with my finger, closing her lips, trying to stimulate her to suck. She makes a few attempts and then pauses, this continues over the next twenty minutes or so, and slowly she drinks a little milk. One of the house mother’s hands me a small bowl of porridge which I gradually get Keneoue to eat with the aid of a small spoon.

I wonder if anyone has ever cuddled this child or taken the time to feed her in their arms. Later that day Mamello (the Phelisanong manager) comes to the physio room with Keneoue in a push chair and asks me about how to hold her. It’s amazing that despite all the children at Phelisanong, nothing ever happens without escaping Mamello’s attention. She holds Keneoue comfortably in her arms, and we agree that with some TLC, Keneoue will hopefully have a chance of a better life than she has known up till now.

Despite her terrible start to life, Keneoue has already achieved more than some of the children here, in that at least she can swallow. Her next physical milestone will be head control. There are a number of children that have no head control, and the reasons for this vary. Presently I am working with two children, Marsala and Lesojane, who can hold their heads up, but they can’t keep it in the midline. They have a type of cerebral palsy called atheotosis. This means they have fluctuations in muscle tone, involuntary movements, and find it difficult to control and grade the movement of their limbs.

Lesojane is worse than Marsala, he is usually spoon fed by the house mothers while he sits on the floor, bracing himself with his arms. Marsala sits at the table and feeds herself using her hand, lacking the control to use a spoon. Neither child can walk, as when your head and arms are always writhing around, it is impossible to balance.  However, when these children’s heads are held in the midline and their arms fixed they can achieve all sorts of things. Now they both come to the physio room at lunch time, and when Marsala’s head is held she can use a spoon to feed herself.

Lesojane has also been able to sit at the table and feed himself, but he needs two people to help him, one to hold his head and one to guide the spoon. He can also sit at the table with the other children when they play, instead of watching from them from the floor, and he can fix his own head, using his elbows on the table. The picture I take of him and Marsala may seem unremarkable, but you can’t imagine how difficult it is for them to keep still and for me to get a shot of them both motionless at the same moment.  

He and Marsala can both walk with the assistance of two people, one guiding the head, the other the arms. If these children’s bodies get enough of the right input and feedback, they will both eventually achieve more independence. I just don’t know how long it will take and it is certainly very time consuming and takes a lot of patience and effort. Fortunately, I have been blessed with two helpers this time, Sylvia and Malineo, which makes my life a lot easier.

Even with two helpers I can only see about a dozen children a day, because the work is so intensive, and it’s totally new to me. Until I came to Lesotho last year I had never worked with children with cerebral palsy before. The work is complex, every child has different problems and needs. Upper motor lesions are out of my comfort zone, I normally work with adults in outpatients with musculoskeletal problems. However, most of the children I know from last year and I am better prepared, having had time to research their difficulties.   

There are more people around to help as well this year, not only do I have my two assistants but there are five people here from Canada and Nelson from Lesotho, who are involved with HIV education, music workshops and all manner of other business. They often pop by the physio room and the next moment are holding are holding an arm or a leg in position, or just simply playing with the children.

With so many children here the need for physiotherapy is a bottomless pit. I am trying to engage the house mothers as much as possible but it’s difficult. There is a high turnover of care staff as they do back breaking work seven days a week, are paid little, live in cramped conditions and have no training. They tend to do things in a way that makes their life as easy as possible, which is not always best for the children. I’m only going to be here five weeks so it’s easy for me to bust a gut for that time. I will be going home to my own house, van, and a three-day working week.

Things are not helped by the poor facilities here and lack of help from the Department of Social Development. The ministerial head of the department graciously pays a visit this week, as he did last year when I was here (blog 6). There is another election coming and the madness of around 250 million maluti being spent on this event by one of the poorest countries in the world. There are dozens of parties for a population of about 2 million, each party trying to grab a share of the money and power. The consequence will be that eventually another coalition government will be formed and the squabbling and infighting of the Lesotho government will continue.

Meanwhile Phelisanong has only a few broken-down wheel chairs left to try and transport the children over the over the rough ground to school. I meet the minister as I am coming out of the physiotherapy room. I am holding Tokiso under his arms, taking nearly all of his body weight, as I take him out to his walking frame. The minister offers me his hand and I stand there holding Tokiso, wondering if the minister expects me to drop him on the ground, so I can take his proffered hand.

Eventually I manage to sit Tokiso down and then shake the ministers hand as one of his entourage holds an umbrella over his head. I can’t think of anything to say to him, and tell him that I have go to walk Tokiso back before we both get drenched. The minister leaves in a hurry as the hailstones start. He has surely already spent enough time with poor people and orphans to win some crucial votes. Earlier he had visited the house with Keneoue in and asked who had bought her here. He is surprised to learn it is his department and promises he will try and find some more information out more about her. This week has been all about heads, strangely shaped ones, ones that won’t keep still and ones that I feel need uncomplimentary prefixes in front of them.                      

Blog 15: Goodbye/ Hello

My last few days at Saint Angela’s pass by in a blur of report writing, training Christine and handing over as much detail as possible to her, so she can continue to run the physiotherapy as the newly qualified physiotherapy assistant.

The girls put on a marvellous display of traditional singing and dancing for me in the physiotherapy room. They wear skirts made from shredded maize bags and underneath have belts made of old bottle tops. When they flick their hips the skirts flare up and the bottle tops jangle. I have no idea how a girl with no feet, one with cerebral palsy and another with hemiplegia are achieving this feat. I can’t get near it without any disabilities.

The boys are huddled in a corner playing chequers, but Christine is having none of it and insists they join the girls in a courtship dance, facing each other in two lines. There is lots of squirming and embarrassment from the boys and several bids to escape, but there’s no getting out of it. The ever laughing Rets drags himself across the divide, but is rejected by his potential partners. Tiger and Phaz fare better and eventually the girls are whittled down to the last one.

Somehow you always know in these situations who the last one to be chosen will be, and sure enough its little Sadi, with only one eye, a withered arm and shortened leg. Life can be so harsh at times. The lines are redrawn and the girls pick boys. Christine pulls me up to join in and I do my own version of Saturday night fever and pick Rets. Fortunately, he accepts and I tell him I am looking forward to him cooking my tea tonight.       

         

Finally, it’s time to go home, but there is on last treat and Christine and Lucky sing a duet. They both have extraordinary voices, and sing a mesmerising gospel song together. Christine has a beautiful soprano voice, while Lucky is an incredible Baritone. You would never guess the sound came from a young man in a wheel chair with brittle bones.

I wander down the dusty road as the sun sets, pondering on the highs and the lows at Saint Angela’s. They have been as contrasting as my last visit here, some of the lows unbloggable. However, when you witness such talent and beauty there is always hope that things will get better. I feel I am leaving the physiotherapy in much better hands than on my last visit and I’m very glad I came back. Even in the last few weeks some of the children have improved and have noticed their own progress. With a lump in my throat I bid them all goodbye on my last evening and move on to the next challenge.

As Manyanye drives me to Phelisanong I feel a mixture of excitement and anxiety. Excitement at the thought of seeing the children again, anxiety about what Tokiso will think about me returning. This was the young boy who had a big dream to walk to school, whose face lit up with joy when he had a chance to walk on a small green zimmer frame that I sourced from Saint Angela’s, and who cried inconsolably when I left, taking his dreams with me (see blog 8).

I couldn’t even promise him that I’d be back, as I didn’t know what the future held. He won’t know how much I’ve thought about him, how hard I’ve tried to find a frame that will best help him. His legs on weight bearing turn into stiff pillars, the feet pointing downwards and in inwards.

It’s a huge effort for him to walk and the more effort he puts in the stiffer his muscles in his legs become. That’s why I’ve brought him a frame with a flip down seat and off-road wheels. The wheels had to be specially made for the frame, to hopefully endure African conditions. I wonder if he’ll be suspicious of me after I raised his hopes a year ago and then left him. It was so difficult to explain my departure to a nine-year-old boy, whose had such rough breaks in life and whose second language is English.

I wonder how the others will be, the children with swallowing difficulties who were being fed on their backs. I taught the care mothers how to feed them upright (see blogs 6,7,8), but what happened when I left? The drive to Phelisanong takes forever and its dark by the time we arrive and bump down the rough track. The surface is worse than ever after all the thunder storms this year.

Mama Jo opens the gate, some boys unload the equipment and we leave, it takes less than five minutes. Manyanye drops me off at the guest house and I find myself staying in the same room as last year. I see myself in the mirror, for the first time in a month and look ten years older than I remember. Maybe the strip lighting doesn’t help.

I barely sleep and am up early the next morning. I pack a small rucksack and leave the house to walk up the track and on to the road, where I flag a taxi down. Soon I am walking down the track to Phelisanong, a beautiful backdrop provided by the Maluti mountains and clear blue skies. I go through the gate and the first person I see is Tokiso, being pushed to school in a wheelchair. It’s an amazing coincidence and he looks at me in disbelief. I crouch down and hold his hand and tell him I’m really pleased to see him and will meet him later for physio after school. He’s wheeled away still looking stunned.

I go to the hut that I was using part of for last year for physio, sharing it with the clinic and social worker’s office. The space I was using is filled with metal fruit driers, a washing machine, drier, a wardrobe, tools and boxes of apparent rubbish. There is up roar as I insist it all goes. A battle ensues with Mahali, the man who organises the sports here, says the boxes are full of football stuff. Some of them are, some of them not.

“Look rubbish” I say pointing at empty plastic bottles. “Yes rubbish” chorus the social worker, clinic lady and care worker, taking up the cry.  Eventually there is a compromise, the wardrobe and football kit get to stay and everything else goes. The social worker, Nthaza, helps me unpack all the kit I have brought, frames, crutches, a corner seat, bowls, soap, water containers, blenders, cutlery, cups, toys, books, games, therapy balls, tools. I had no idea I had so much stuff and assembling it and clearing the room takes the best part of the morning.

I then go with Nthaza to look round the houses and decide which of the many children I will pick for physiotherapy over the next month or so. The setup of the houses has changed since last year and children have swapped rooms. I start in the house which has some of the youngest children in and most disabled. I have already decided that I will be continuing to work with Lineo (blog 7) and Malafane (blog 8). Last year I got Lineo standing and beginning to feed herself and want to continue her progress and get her walking. I’m in for a surprise, the staff have beaten me to it and she has been able to both feed herself and walk for some time.

Lineo waddles across the room and gives me a friendly thump. It’s lunch time and I can’t believe what I am seeing. Not only are the children being feed upright, but Malafane is managing to feed himself. This is the child who last year was being fed on his back, the house mothers forming a trough under his chin and scooping the food into his mouth before his large tongue could push it out again.

He looks at me triumphantly as he manages to get most of an entire spoonful of food into his mouth. I have tears in my eyes at his incredible feat. I feel that teaching the house mothers to feed the children upright and them continuing to do this and progress it, is one of the most worthwhile things I’ve ever contributed to. Feeling rather emotional I move on to the next house.

In the afternoon, Tokiso, Marsala and Kolosa come to the physio room. After Malafane’s amazing exploit I am eager to see how they are all getting on with their walking. It’s a big disappointment. They all seem worse than I remember, the boy’s muscle spasm and Marsala’s uncontrolled movements make walking terribly difficult for them. “Look Mme Jan I am training,” says Tokiso excitedly as he struggles a few yards down the path. I try to smile and encouraged him, but can’t see how he will ever be able to walk to school. His legs are so twisted they wrap around each other as he tries to move them.

The afternoon finishes on a brighter note as I go back to their house with them and read all the children the Three Little Pigs, with Nthaza translating and using the finger puppets. Florence rises to the occasion and the children laugh delightedly as we run around pretending to be the wolf with our bottom on fire. I say goodbye to them all and that I’ll see them all tomorrow. Tokiso has shyly told me it’s his tenth birthday, so of course I won’t be missing it.

Saturday dawns and I manage to find some pens, a note book, a bar of chocolate and a car building set, like the one I gave Alex, with a screw driver and spanner. I go to Tokiso’s house and give them to him. He clutches the plastic bag to his chest without even knowing what’s in it. I think it’s unlikely that he, or the other children, have much experience of receiving birthday presents.

It takes him the best part of a couple of hours to patiently screw the vehicle together and he is delighted with it. After he has had lunch I go to his house with Ashton, who is here doing some voluntary working teaching the children to hand sign. She on guitar and drums and I’m on sax. Some pretty wild dancing ensures from the children who are able to stand and ear splinting screaming from one of the children who can only lie in bed, who joins in the only way she can.

I walk back up the track with Ashton and we catch a taxi being driven by a man in a red plastic builders hat. He tells me he remembers me from last year. I don't remember him and wonder if I should be wearing a hat like his, but he delivers me safely to the guest house without the need for it. Hard hats are sometimes necessary on the emotional roller coaster ride Africa can throw at you, but I got away with it this week.            

  

  

Blog 14: Infectious Diseases.

I wish to block most of Monday from my mind, but part of the outfall of events from that day, is the evident need for cleaning products and a lockable medicine cabinet. These necessities become apparent as I further explore the environment which the children live in and the impact it has on their lives.

There is a washing machine and a hoover here, but the care workers are not allowed to use either due to the cost of electricity. So, you have three care workers trying to look after 26 children, provide 24-hour care for them, and do the cleaning, with only a bottle of pine gel. As you can imagine with a dozen of the children in wheelchairs there are some issues surrounding toileting and two of the children are incontinent.

If the ladies want to use cleaning gloves, they must provide their own. Since they are paid a pittance this is a big deal. There is no soap provided at the sinks for the children to wash their hands and toilet roll is rationed in little piles on their bed every day. Tuesday morning is spent in down town Maseru buying bleach, gloves, masks, toilet roll, soap and various cleaning agents. I know that this doesn’t solve the long-term problem and intend to ask the bookkeeper about extending the provision in the budget for cleaning products.

Once again, I am so grateful to the people who gave me donations in Wales and the means to provide these essential items. The search for a medicine cabinet proves fruitless and I make do with buying some lunch boxes for each child’s medicine and putting them in a cupboard I find in the office. I put this into a bedroom with one of the care mothers so she can supervise the children taking medicines.

The system up to now has been that the children being responsible for taking meds, or not as the case may be. Christine found one of the children had not been taking their HIV medicines (ARV's) for the last month. These should be taken every day to keep the immune system fit, or their viral loading becomes high and they are vulnerable to infections. I found one of the younger children with a bottle of epilepsy medicine in their pockets. Last year when I was here she was fitting a lot, this year the teachers say she is falling asleep all the time in class. Who knows what dosage she has been swigging from the bottle.

Other items on my shopping list are ten washing up bowls, ten large water containers with taps, and soap. The former items are for the pre-school teachers and the infectious diseases and hand washing course I am running this week. There is simply no point in running such a course without providing the means for hand washing, as most schools do not have sinks, running water, soap or flushing toilets.     

I also buy some board games for the children. Many of them have learning difficulties and are behind at school.  Evidently a special education teacher was visiting Saint Angela’s, but they have recently stopped coming because they are no longer being paid by the organisation that sent them. It is unclear whether the children gained anything from the experience anyway. Meanwhile, they are sitting in classes where the norm is chalk and talk and learning by wrote. This is  not ideal for them and simple games can provide them with some planning, numeracy skills and fun.

A further shopping expedition follows on Wednesday morning, as before they left, the big hearted Irish builders gave me an envelope stuffed full of thousands of Maluti to buy bedding for the children. The dormitories look more like a hospital wards, with their plain blue sheets stamped with Saint Angela. Thirty-two reversible toppers are finally bought after a long hot morning tracking down a bargain. The instant brightness they bring to the rooms made it worth the effort.    

We manage to get back just in time for me to set up for the pre-school teachers hand hygiene course, due to start at 2 pm. The teachers from six schools finally arrive at 3.30pm with big smiles. I adapted the course from a training pack designed by Marion Baker, who I met on the ILO programme last year. To make a visual impact I have brought some special glow gel and dust and UV torches to show how germs spread. I have already doctored the signing in sheet with dust and the results are rather good against the black skin, bringing lots of excited chatter when I shine the UV torch on participant’s hands.

The course finishes with the issue of bowls, water containers and soap so the teachers can set up a hand washing facility in their own schools and hopefully ensure that their pupils adopt hygienic practices. The items are received with much gratitude, but not as much as the Powys LHB certificates for attending the course (thanks Helen), which receive a chorus of Hallelujahs and a photo call.

On Thursday morning I am finally able to get some physiotherapy training done with Christine. She has proved naturally adept at assimilating these skills and spotting where the children need extra help. Her high heels continue to fascinate me, but she can whip a pair of flat shoes out of her bag instantly when a steadier base of support is required.

We whizz through the basics of movement, joints, stretches and use of equipment. I was hoping for a bit of a chill before the children come for physio, but just before 1pm the next-door pre-school teacher comes in and announces that the teachers who didn’t make yesterday’s course will be arriving at 2pm. Even given “Basoto time”, arriving 24 hours late for a course is pushing it.

Nonetheless, I go back to the guest house, pick up the stuff I need and am ready for them at 2pm. At 3 pm I am still waiting and the preschool teacher comes in again and announces the teachers are now not coming because they have gone to a funeral. Sometimes the way this country works is totally baffling.  

Christine and I quickly adapt to the situation and give the Saint Angela’s kids a hand washing course instead. I shake them all by the hand, having already loaded it with gel. They are all rather freaked when I shine the UV torch on them, thinking it shows actual germs. I don’t enlighten them, as the fear brings the instant effect of them all obsessively washing off the apparent bacteria the light reveals. Hopefully this lesson will remain with them in the future since they usually eat meals with their hands.        

At 4pm Veronica and Manyanye arrive and I leave Christine with the kids while I show my visitors around. It is nice to be able to share with them what a great facility the physio room is, how enthusiastic the kids are and the potential benefits that Saint Angela’s could offer children living with disability to realise their potential.        

This morning I write a job description for responsibilities of a physiotherapy assistant at Saint Angela’s and there is more staff training with Christine. The children finish school early on a Friday afternoon and they are then usually tasked with doing their weekly washing. They sit on the ground with a washing up bowl in front of them, trying to do their best with their deformed arms and hands. For the boys with brittle bones it is particularly painful to sit on their bottoms and the old fractures of the bones in their legs. Today Alex has been afforded the luxury of staying in his wheelchair and balancing his washing up bowl on top of another.

I spent the previous hour with him while he patiently built a small car with a small screwdriver and spanner. I remembered I had brought it with me after I noticing his fascination with tools, and thought he might enjoy doing it.  I'm not sure who got the most pleasure out of the task, him building it, or me watching him. Making him and the other children do their washing seems harsh, but I suppose the argument would be that it instils independence in them and they will need to be responsible for their own washing in the future.  I sigh and walk back down the muddy road towards the guest house. The lights dimming and there’s a storm coming.