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# First Week

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Kodari, Nepal
Sunday, April 28, 2013

It's been very difficult to write another blog entry for a number of reasons. The internet connection has been poor most of the time or the power off or both, and our first week so taxing physically and emotionally that I just haven't had the energy.
The food has been a big challenge for everyone. When we stayed at Bidya and Suhendra's house the first time, it was just us and she seemed to make more of an effort to provide a variety, but with six other people in the house it's been rice and bread for breakfast every morning. That may sound ok, but it isn't. Nepalese bread is awful--it has a sweet after taste--and just eating carbs leaves us tired. We eat about 8am then don't get lunch until 2.30-3pm. One day lunch was one fried egg with a handful of beaten rice. And that's exactly what it is--literally beaten, so it turns into flakes that can be eaten without being cooked. It's ok mixed through a curry so there is some liquid to soak it up, but with just an egg it's very dry. Another day it was a doughnut. The woman who works in the kitchen at CBR now seems to hate the volunteers and hate cooking more. Before, the food was better and there was plenty of it. This time, Manuel, a tall boy of 26 had to beg for more food and it was given with great resentment. He took to bringing packets of biscuits to supplement and when the cook saw this, she gave a sneer of contempt and walked off.
But all this pales into insignificance given what we've been faced with in the daycare room where we've been working. Only two of the kids are still there from my time. Ani is coming back but had surgery on her legs recently and is still recovering. The new ones are very disabled and mainly because they were unlucky enough to be born in Nepal.
Anushka is three, but the size of a five-month old baby. She has hydrocephalus which is of course totally untreated. Her big head is very heavy for her to hold up so she prefers to lie down as is obvious from her very flat head. We sit her up as often as possible to strengthen her neck and back. She is sweet but doesn't make any eye contact or engage in any way. On Friday we arrived to find her very irritable and fretful. She felt very hot and was just miserable. Kirsten carried her around but she whimpered pitifully. I couldn't stand it, so in the absence of any baby Panadol, I broke up a Panadeine tablet that I had in my bag, crushed up a quarter of it between two spoons, added a few drops of orange juice from an orange that Sarah the physio had, and fed it to her. Half an hour later she had stopped whimpering and seemed much better. Her fever went and she was almost back to herself.
Smiriti is nine, but a tiny delicate little girl. She looks drugged to the eyeballs, which I think she is, on epilepsy medication. It doesn't stop her fitting constantly, whimpering as she does so. She smiles but doesn't do much else. I think she will gradually deteriorate.
Worst of all is Manush. His mother, Subitri, showed us some photos of him when he was younger and he looked ok compared with now. He has cerebral palsy and has enormous trouble swallowing. As a result he chokes on his food every time he is fed. He is on a second course of antibiotics because his lungs are basically full of the milk from the bread and milk he is fed. You don't need a stethoscope to hear his breathing, which sounds like the filter in a fish tank bubbling. He is almost 17 but a mere skeleton, so not much food is getting in. I said to the two phyios, Sarah and Natasha, that what he needed was a nasogastric tube, so he could at least be fed without the distress of choking. They were up for giving it a go, so after some discussion with his mother and other staff, Sarah and I set off for the rather frightening Alka Hospital in Patan to buy the equipment. The hospital wasn't as horrific as I'd imagined, just very old and basic. We bought the supplies from the pharmacy, which opens through a window on he street. You just rock up and ask for whatever you want as though it's a shop.
Getting the tube down wasn't the problem, but maintaining it was. Sarah was willing to sponsor a nurse to come from the Nutritional Rehab Hospital to come once a week. Realistically, this wasn't really enough. I put the tube down, but then couldn't connect the syringe to it and was therefore unable to check whether it was in his stomach or his lungs. So I just had to pull it out again, only to find that there was a separate piece that was loose in the packaging and had fallen out and underneath him. Ahhhhh!!!! I was not prepared to put him through the trauma of having it back down again so we abandoned it for that day.
At this point I lost the plot. I broke down and Kabita, the teacher with the most English, took me into the physio room to comfort me. She was very kind and told me to think of it all as a bad dream. Subitri also tried to comfort me, saying, "No tension, no tension."
Of course now the problem was that expecting him to be tube fed with the supplement we had bought, they hadn't prepared him any lunch. His mother mixed it up anyway. We tried to convince her to add some bread to it to make it thick, because feeding him with a thin liquid was the worst possible thing she could do, but she insisted on giving it to him straight.
The result of all this is that she has decided she doesn't want the tube and will continue to feed him as usual, but add the supplement to his food. *sigh* He'll continue to aspirate, but there'll be more vitamins and minerals! None of this was going to change the fact that he's dying. His frequently gasps for breath, in great distress. If he were at home he'd at least get suction and oxygen; here he just gets his mother's constant love and attention, which is something.
The family lives in a one end of the daycare room, divided by a cupboard and just big enough for the double bed: Subitri, Manush and the girls, Muna and Juna, because Subitri works as the maid at CBR.
All I can say is, that the whole thing is shitful and it's best not to be born in Nepal.

## Comments

> Very sad story Rose. These are the things that the rest of the world never sees or brushes under the table. From Marlon Holden, on May 7, 2013 at 09:19PM

## Pictures & Video

Subitri with Manush |

Subitri with Manush
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