ATTACHED TO SUSHMITHA'S BELONGINGS

I am very much attached to Sushmitha's belongings. I have preserved her dresses,her books, her hair clips her cycle, her dools. I don't like if anybody(anychildren) come home and play with her doll.There is a alteration going on in godown near our house and a worker brought his daughter along with him. My husband wanted to donate the cycle to that girl. But I told him I want to keep her belongings the way they are. Actually I have preserved Anil's notes also. People don't understand my feelings. Sometimes they ask silly questions like whether she can take food or she can turn over. When I say she cannot it is so difficult and that is which they don't  understand. Sushmitha is awake at night now. She gets up at night 12  o'clock and sleeps  in the afternoon 12 o'clock.Sometimes I stay awake for her sake till 2 AM and sometimes I cannot. I am having heel pain from 2, 3 months. I am taking physiotherapy, hot water dip, and calcium tablets on doctor's prescription.Life seems empty. There is so much unhappiness at home. People quarrel for silly reasons. I try to forgive everybody and try to see everybody is happy. Then I say to sushmtiha I do this only for you my child, only for you.

SUSHMITHA'S DAILY ROUTINE

First thing what we do in the morning is at 6 AM in the morning first after her first dose of medicines serenace and pantacid I take water mixed with clohex mouthwash and saline water and brush or rub her teeth with cloth dipped in the solution. After that I give nearly 5 to 10 minutes of cheek and jaw and tongue exercises to see that there is no mouth and jaw tightness. Then after making her sit in the chair I give her coffee. After that we start her feed sofit(soya milk drink). Then we give manual standing because her legs sometimes will be little swollen because of not moving at night and evening.and I believe it will increase blood circulation. Because I can see the colour in the legs rising.then it is 7.30 AM and it is the time for medicines. After that we give her nebulisation. After that at 8 AM it is time for rice feed.Before giving the feed we give her neck exercises. and along with feed going down trough rice tube we start passive movements.Which includes hand and leg movements and plantar stretching. When we give hand movements we keep legs folded  so that her lordosis comes down(back not touching the floor).If she is awake I start swallowing session. I give her sugarcane to bite (jaw and mouth strengthning) and lollipop( for tongue movements).Then usually she is taken for bath. Again I brush her teeth this time with brush. I open her mouth and keep my finger inside so that it is open and my nurse cleanses with brushing the teeth just as we do. I believe oral care is very much necessary for bed ridden patients. Then it is daily head bath. I use a liitle more hot (toelerable) water for back pain due to constant lifting and shifting. Then again we give her bath in the evening( only body). After that we show her visual toys(if she is awake)We show mirror for eye movements.We also five her commands(which now she is not doing now). Only she gives eye contact. After that we call her from up(from upstairs), from window, from backdoor. Visually she gives good response but it depends on her alertness level also.Sometimes I give her activities to follow like sweeping the floor or me combing hair. or taking cobwebs.Then we start our daily rolling form side to side, cross  srteching, cheeck and neck exercises again leg flexion,Abductor strching,hand weight bearing, straight strchings which evolves hamsrting streching and prone on elbow for neck control. Then chest physiotherapy is done to loosen all secretions(slowly and gently). Again by now it is 12 in the afternoon and again we give her tilting table standing.We constantly try to move her by making her sit as often as we can also giving her rest in between.The as 12 AM feed goes down in the rice tube nurses take afternoon lunch and after lunch they go to take bath.After coming back and after afternoon session of medicines an nubulisation in the afternoon it is time for 2PM papaya juice feed.Now her wakefullness is more. She startles at small noises just as small children do.Sometimes her choriform movements are more and movements are more sometimes.Sometimes if we have time we give traction and trunk rotation.This month full she had cough and loose motion. She was ok for sometime then again she started having cough and again there was loose motion.Doctor Pushpa Kini told me to get the water checked once and the water was found to be defective. Again this needed us calling the official who cleans water almost everyday. Then after cleaning well now we have started using the water.