SUSHMITHA MY DAY BEGINS WITH YOU-MORNING, AFTERNOON AND NIGHT

Sushmitha has improved visually.Her right side seeing is better now. Today she turned neck and was seeing both sides. There is so much happiness on small improvements.I also know these improvements do not remain for long..She sees me going upstairs that too in sitting position which was difficult before. I just want to increase her visual feild so that she can see everything going around her and thus make her aware of her surroundings. I give her fast tracking by going up then coming down and going backdoor then call from window then going around bed.But It is very difficult to see her cough.I had a visitor in our house and she asked innumerable questions. She asked me whether she can eat and whether she can turn over and whether she can hold objects. I told her if she asks more questions I feel difficult because  I have to say she cannot do these things.I never like to probe into somebodys problems. We should if only they want to share it with us or if it helps them.

CONCENTRATING MORE ON PHYSIOTHERAPY THAN ON STIMULATIONS FOR NOW .

I am concentrating  more on physiotherapy than on stimulation for now. Because She had a severe chest infenction and I have to take care it does not happen again. Lower lung left lung collapse is certainly not a small issue. By going through internet I feel bronchoscopy is done to inflate collapsed lung. Now coming home she still has cough. Her physiotherapist Dr watson sir tells me that she should not be allowed to lie down long..Continuos movements are what required now or else she will have relapse of chest infection.So I focus more on nubulisation, chest PT, standing, rolling,upper limb movements. Inspite of giving all these there seems no end to these secretions.Morning to afternoon she sleeps and she looks ok. but after 3 PM again secretions get collected. I can hear different sound in her breathing when secretions get collected. So we start nubulisation so that secretions soften and then we give chest PT and then vibration near diaphram. we also give rolling and upper limb movements. We also give. neck flection along with standing. After giving all these movements She gets cough. If she is sitting I immediately bring her forward and tilt her head down.She brings out he sections. Sometimes they are thick. When I informed Sushmithas doctor Dr Pushpa Kini she told me to give duolin nubulisation and start 4 hourly nubulisation.She seems much better now.She also has rectal wound and I am applying drez after consulting doctor.If within a week if that does not heal I have to inform doctor or else it might turn into bed sore.I am also maintaining oral hygiene by brushing her teeth twice a day.Once in the morning and then during bath.Her Coffee drinking seems to have improved. I just hold the glass and she sucks coffee.If she likes something she will drink making sound. Today her rice eating was better and I am happy for her.

FEVER AND COUGH ALONG WITH CHEST INFECTION AND SATURATION POINT DIPPED DOWN

Sushmitha had severe cough and fever. I went to Dr Pushpa Kini who put her on antibiotics for seven days. Next day She vomited after feed, I immediately put her face down so that she does not aspirate. But vomiting was so much it came out from mouth and also from nose. There is chance of aspiration. Night I was cleaning my room when she vomited again. I was not there so I don't know the amount of aspiration. Next day her nails turned blue and she had a difficulty in coughing and she was having a painfull look as though coughing was difficult. I phoned to DR pushpa Kini and told her about nails turning blue and her having diffculty to cough. She assured me everything will be fine because antibiotics were put and it will take time to have its effect.She assured me to come anytime incase of emergency. By evening I phoned to a person in KMC and he told me there are no vacant rooms. By evening at 7 PM I noticed rapid breathing and I understood some discomfort on breathing. I felt suctioning was what she required and I went to Rotary KMC Manipal.There DR Asha Hegde examined her saw her saturation point being low and she told me that Sushmitha needs oxygen so I should get her admitted. Suddenly packing everything and going was difficult for me because I cannot forget anything and I have to pack everthing. Morover there was shortage of rooms in Manipal. So I told her only for today I will admit her here and next day I will move her to Manipal. Next day by afternoon I got discharged and took her home. Next day she still was coughing. So I contacted Dr Pushpa KIni and she told me to bring immediatelt. Ater reaching  Manipal chest X-ray was done and left lung lower lobe was infected.So Dr Pushpa Kini told me this was more than a regular chest infection.So she started on Gentamycin injection through IV.She advised Chest PT and a respiratory therapist started chest PT and suctioning. Lot of nubulisation was given. I admitted er on !6nth. By 22 nd again Chest X-ray was done again and her X-ray showed no improvement DR Pushpa Kini told me Bronchoscopy has to be done to remove watery secretions.Again added medicines derriphylline retard and tablet ciprofloxacin. I think these tablets worked lie magic. Sushmitha responded well. Her respiratory distress decreased and oxygen was slowly taken off and we were discharged. I think it is only the Swiftness Of Dr Pushpa Kini in decding what to be done which saved her and cured quickly. Everytime she has risen above humanbiengs. Chilldren are treated irrespective of rich or poor.I heard a lot of peculiar cases getting cured after coming here.People come here from all over Karnataka. This time it was my son Anil along with Dr Pushpa Kini who suppoted me throught.Even my new nurse Prema stayed with me at night eventhough I gave her sufficent rest during day. I hope and pray to god not to put her in more difficulty and I cannot see her suffer.

LIFE HAS TO GO ON

This is the most unfatefull day in Sushmitha's and our lives.Now at 6-30 she started getting convulsions. She had pnumonia. There was lack of oxygen and there was irreparable brain damage. By the time we shifted her to KMC manipal it was too late. Anilanna bring chewing gum and lollipop were the last two words uttered by her.  After that Dr Pushpa Kini tried in all ways to treat her even giving me emotional support. I thought she will miss school for some days.I thought she will open eyes and say amma. But nothing in life is same anymore. Slowly I realised I have to be strong to take care of her. Because I know brain damage due to hypoxia is not reversible. At the same time if I believe that she will not improve I cannot function.Because of fits there were some problems in her development. But I love Anil and Sushmitha same. May be more to Sushmitha. Because Anil Is independent and he can take care of himself. Life has to go on.

MORE ALERT AND NOTICING PEOPLE

She has become more alert. She tracks people passing which had diminished. Her alertness varies.On somedays her alertness is low and somedays she notices everything. Yesterday she noticed Laxmi plucking flowers from garden. This only means she is little aware of her environment. But in memory lane she may not be knowing anything. Even her right vision has improved.We give a lot of visual stimulations. But for photoseeing she does not turn from left to right. I was upstairs talking in mobile and she was watching me.She saw water passing through food pipe.I feel sometimes she protests for nubulisation. She also shakes her head when we take dirt from her eye.Sometimes she takes one oral feed by mouth. I am happy with her small improvement. We never realise the value of anything until we lose it. She was  calling me amma and I never knew it was so precious.Now I am hearing lot of divorce cases. I wish atleast for thier kids sake they stay together. a child needs both father and mother.

CHANGE IN SLEEP WAKE CYCLE

SUSHMITHA HAS DIFFICULTY IN TURNING HER GAZE FROM LEFT TO RIGHT

Sushmitha has difficulty in seeing right. She cannot turn her gaze from left to right. Already her doctor Dr Pushpa kini has told me this long back. We are giving her lot of visual stimulation to improve her vision. We give her mirror. She is made to look from left to right and then right to left. This atleast 3,4 times. Then we rotate mirror clockwise so that she rotates her eyeballs likewise. Then we show her visual toys which have colourfull lights, music, and which can move. She tracks. We also vary the speed. Also around bed we put pendrive music along with colourfull toy so that she follows both music and light. Sometimes with music light is shown along with mirror alternatively. We also call from up, stairs, from window. But Sushmitha's nurse Mallika tells me aunty, we seem to remain where we are after giving so much stimulation. We are still doing zeeb dakayi, kannu mucchu, amma nodu, kai gatti hidi(hold hand tight). She was obeying commands earlier. BUT NOW SHE ONLY GIVES EYE CONTACT. I still have some positive points. I will not be weak. When I told Dr Pushpa Kini about this she consoled me Geetha not letting her deterorate further itself is improvement sometimes. Theree are no bed sores and she is nowhere stiff. I agree with her. But time machine please stop for I fear you might have more difficulties in future for my child.Everybody is dissatisfied at home and quarrel for silly things.But I know I need everybody and I will try my best for my child, for my mom for helpers who help me.

I WANT TO SHUT MYSELF AWAY FROM WORLD

I don't know why I feel like not wanting to speak to anybody. Actually I like people and I like to mingle with people. But there are lot of problems. Sushmitha has been sleeping continuously from past 3, 4 days. I cannot stimulate her. Now one nurse Laxmi has gone home to attend her sisters wedding. There is a function in Chethana School. Sometimes I feel obligated because of designation. I told them I want to quit since I want to concentrate wholly on Sushmitha.

SUSHMITHA ATE HALF IDLI ORALLY

Sushmitha ate half idli orally along with coffee. Yesterday I gave a small cup full upma. She responds more to calling from up, from window, around bed. Day before while taking rice feed(grinded) she bit her tongue and she cried taking sound. Tears were rolling from her cheek. She protests by moving her head away from nubuliser during nubulisation. She can feel the medicine going through rice tube even in sleep. Yesterday it was ugadi. Sushmitha loved to have food in my brother in laws house. I gave a little payasam and discontinues when she got cough.

GIVING EYE CONTACT WHILE TALKING & STIMULATION BY VISUAL TOYS

I LOVE YOU NO MATTER WHAT

God gave me a precious gift in the form of a daughter. She filled the house with laughter and also with her talk. We were very happy together because I loved her no matter what. Then he took away her smile, he also took away her talk, She could no longer eat nor could she say amma I loved her still no matter what. She would look at me as if she knew I was her amma. Only that was enough to spend my lifetime I thought Because that was only what I had. I loved her still no matter what. I know she can never be what she used to be nor she was what other children were. But she was mine. Mine alone. I loved her no matter what. Life is not what it used to be. I find it difficult to live, I also find it difficult to die. Life is full of hurdles and difficulties. But I will do it for you my baby, No mater what.People are there with you in your happiness but only few remain with you in your happiness how true the proverb is. But I will never forget the few people who are with me. no matter what.

SUSHMITHA DOES PHOTOSEEING VERY NICELY

Sushmitha is doing the photoseeing very nicely. But what she does this week may not be there next week.Out of three I ask her one. For example her friend Madvitha Swathi Mallya then Sushmitha. When I say Madvithanannu nodu she correctly sees then I ask her to see Swathi then Sushmmitha then in opposite direction. Likewise for jam, lollipop, spoon. Again cow cat and hen. She is responsive to calling from up, calling from the stairs, calling from window, around bed. But we cannot concentrate on everything becuse when we stimulate her we cannot concentrate on physiotherapy. She bites sugarcane very fast. But her leg is swollen inspite of manual standings. She has choriform movements again. Sometimes it looks she is not able to cough. I should ask doctor how to stimulate cough because sometimes her cough is not very strong. Everybody seems to have forgotten Sushmitha. Her rice tube keeps slipping.

SUSHMITHA EATING SUGARCANE

HAUNTED BY MEMORIES

There are some days in which memories of Sushmitha keep haunting my mind. There is a box in which bangles of Sushmitha are kept. There is a purse in which earrings of Sushmitha are kept. On sunday there was my brother in laws daughters wedding. I wore grand saree and attended the wedding. I was talking and laughing. But inside my heart was crying. After coming back I feel like crying for no reason. It is so difficult sometimes when you want to be alone and cry and you cannot.Since my old nurse was quitting I had appointed a new nurse. But now she does not want to say. She says mom keeps her nagging whole day. She does not get along with mom. I don't know why mom has become so much unbearable. She does cooking taking the help of helpers. She is detached towards Sushmitha. If mom continues to be like this soon I will have no helpers. No body will want to stay. Very difficult woman. Today Sushmitha ate sugarcane very nicely recordings of which I will be putting in my blog soon. Today she drank papaya juice also in glass without much cough. She was awake whole day. Today photoseeing was also very good.

SUSHMITHA HAS CHORIFORM MOVEMENTS AGAIN

Sushmitha has started having choriform movements again. When I reported the matter to Dr Pushpa kini she told to wait and watch for sometime. Now she eats sgarcane nicely. Gets distrbed by somebody passing when command given. Yesterday I was recorsing in camera and she was looking at camera. Now her right side vision is better. But she has a problem while eating rice. She gets cough. Sometimes when hand movements given moves both legs and takes bodysideways. Mostly on the right. Clears throat loudly. Another fine aspect in her is whenever she urinates or passes stools she opens her eyes and goes back to sleep. I heard some people are not aware of that. In our new house our hall is wide and since her bed is in the hall it is good for her visual stimulations. she can see people coming and going. She can see people coming down the stairs. Sometimes she passes motion while coughing but now it has been three days and today is fourth day and after consulting Dr pushpa kini We gave duphalac rectal supository. and then today she passed motion.

I WANT TO BE WITH YOU EVERY HOUR EVERY MINUTE EVERY SECOND

I have stopped going to functions. But there is one thing whicxh is very near to my heart apart from Sushmitha. That is going to Chethana Special School- which is a school for the handicapped children. I Feel very relaxed after coming back from there. Today there was a meeting. After coming back from there Laxmi (nurse) brought Sushmitha's feed and she wasw serarching for a stool. So I told her till she brings the stool I will hold the feed. When I touched the feed it was very hot. She told me only the vessel is hot but the feed is not. I told her it very hot and it is not the vessel but also the feed. Even the rice tube can melt and surely when the feed passes the tube Sushmitha will have lot of discomfort. She told me it was Ratna who has prepare. I didn't make a issue because mom whould have shouted at Ratna and there was already clash between the tube. But I don' t how many such circumstances Sushmitha has to face. That is why I go running and try to come back soon. Atleast I wish mom could take interest in Sushmitha in my absence. Even she is deteriorating in commands an photoseeing. I WILL FIGHT FOR YOU sUSHMITHA EVEN WITH GOD. She remains awake at night. She gets cough while swallowing. today I felt she has a difficulty over swallowing. But one relief is she bites sugarcane nicely and she brings her tongue out for lollipop. She loved eating.

ANITHA TELLS THINK NOT LIKE A MOTHER BUT AS A HUMANBEING

Yesterday I was speaking to my sister Anitha about Sushmitha. And She told me always she tries to think about Sushmitha in all angles. She tells me just Geethakka imagine yourself in that situation. Don't think like a mother but as a humanbeing caught in that situation. It is so frustrating and so very difficult. Not being able to express what you feel. I tell her sometimes she does the photoseeing so well. It makes me think surely she can recognise some persons. Anitha tells humanbrain is something which nobody has understood so far. When I put forward this view even Dr Pushpa Kini agreed with us. She tells sadly there is no instrument to measure how much a person can percieve. sometimes they can percieve some things but they cannot express. Anitha tells there is nothing I can do now. No choice. I CAN JUST SEE THAT SHE IS TAKEN WELL CARE OFF.