DRINKING FROM STRAW AND MORE AWAKE

She is more aware of surroundings. Her vision is getting better. She can see eye level now. Before mostly she used to look down. She is drinking from straw now. Her response to sound has improved. Whenever the vehicles blow horn she turns her gaze to that direction and when the vehicles pass she follows them. Neck control also has improved. But on cognition level I feel there is deteroration. response to Amma nodu has gone down. Even Illi nodu response has gone down. It was my life line. Not that I love her any less if she does not.

More awareness of surroundings but respiratory problems.

She is more aware of surroundings. She sees vehicles on road. Any food is brought and kept on the stool she is aware. But now she has respiratory problems. Her respiratory rate is 60/minute and pulse rate is 120/minute. So I contacted Dr Pushpa Kini and she put on antibiotics Ceptum for seven days. She also prescribed deriphylline-150 mg twice for seven days which is broncho dilater. She also gives nice response to Dr Watson. She responds whenever he talks. She sometimes stops teethbiting and has heavy breathing. She mostly sees the room with her wide eyes. But response to Amma nodu(Look at mother) has gone down. It is very difficult to see her coughing. Once she vomited. Why God you are making her suffer more? Are you not satisfied with her suffering.What has my child done? I want to hold her in my lap like before.

SUSHMITHA RECOGNISES HER FRIENDS BY LOOKING AT THEM WHEN RESPECTIVE NAMES CALLED

On 12th of this month exactly one week before five of Sushmitha's friends came home. I just for the sake of talking I asked Sushmitha Look at Madvitha and she turned to look at Madvitha. Everybody was happy and I thought this is coincidence and I asked her to see Swathi and she looked then i asked her to see Priya and she did. Then I asked her to see Sangeetha and she looked. Then physiotherapyst Watson sir was about to come home for physiotherapy treatment. I told him about this. and he was interested and happy. Then I thought too many names might confuse her so I stuck to Madvitha and Swathi mallya and again two times she looked at them. in the meanwhile they asked where is Amma and she looked at me. By happiness knew no bounds. Next day I reported the matter to Dr Pushpa Kini and she was very happy for me.

YOU ARE ALL WHAT i HAVE BABY

I feel nobody needs me. My husband keeps scolding and quarrelling for no reason at all. My mother keeps nagging whole day. I don't know what is my fault. before mum used to get angry with me because I used to go out to Chethana School to help the gods special children. My husband doesn't like anything I do. They are not trying to improve Sushmitha and they think simply i am troubling her. But how can I stop trying? I know my trying may not be what u want. i may be selfish. But you are all what I have baby. Nobody supports me. So I don't want to live in this world where always people find fault with me. You are all what I have baby, You are what I have and wish not to loose and if I loose you for some reason I wish that will be the end of my life.

FOLLOWING SIMPLE COMMANDS AND SUDDENLY FOR SOME DAYS LESS RESPONSIVE

Sushmitha seemed to follow some simple commands. Illi nodu-( look here) she follows most of the time. Look at mother also she does. Jeeb Dakayi she does. Open your mouth she has started following. open your mouth she sometimes does. Open your eyes sometimes she obeys. Lollipop nodu she looks. I feel she understands it is for eating. She sees it and sometimes follows it. But suddenly whe she started doing all this her sleep cycle got changed. She is sleepy during morning hours when she used to be most responsive. One look she looks at me when amma nodu command given I feel so happy and i don't want anything else in the world. I now have the strength for anything.

SISTER TELLS ME TO SLOW DOWN

Today Anitha my sister called and told me that she had spoken to somebody about Sushmitha's condition and the person told her that today Sushmitha is alive only because I am holding on to her. And I want her to get better for my sake.But maybe this is not what she wants. Maybe she is too tired and wishes to take rest. She might have body pains also. In foriegn countries they just keep such patients under sedation. Sometimes her body may require rest and I should give that to her. Anitha says it doesn't mean that I should stop trying just give her minimal physiotheraphy and not overdo it. She says at this point of time most of the people give up and she is happy I am not. But I feel there are positive changes like look at your mother she turns her head and looks at me. Look here she turns to whowever calls. Opens her mouth on command. Shows her tongue on command. So I cannot give up at this stage. You are all I have baby. I will never let you go. The thought that you can recognise me as your mother is enough and this can keep me going for the rest of my life. Onde ondu sari kanna munde bare. Today you turned your head to look at me and i am happier today.

HUSBAND SAYS I HAVE TO ANSWER GOD

Sushmitha again is sleeping heavily. So I cannot give much stimulations. Anitha came from USA and she says there is certainly some change in her. There is some response coming but you cannot gueswsher level of perception. My husband says we are doing much physio so I am not giving her enough rest so I have to answer God. I don't mind answering him but let him first answer my question first. Why is punishing my innocent child? and my husband is not at all spending 5 minutes in a day with the child. She has so much pain in her body and she was moaning a lot 2 days back. I also fear that nursing physiotheraphy all these things are so costly whether I will be able to look after her in the future in the same way we are doing now. Sunila from speech taught me the importance of association and signature. Every person has a different signature. Similarly every person should identify themselves in differnt ways. Like she has a seperate way of touching patients like squeezing their hand and so the patient identifies her and another person can pinch her cheek so that she will know that it is that person. And in association she is thought to associate the spoon with food. First touching her mouth with spoon and giving command to open her mouth. Then giving her food so that when spoon is brought near her mouth she will know that food is coming. And she told me to give Sushmitha small commands like open ur mouth, See here(Illi nodi) which she is already doing and don't do this-like don't bite your teeth.I liked it. From morning I start stimulations and i don't take rest but I get constant scolding from mom if I am late for feed, from my husband for always stimulating her and from Watson sir because he thinks we are not waking her up and not stimulating her. It is becoming very difficult to wake her up these days. She sleeps all the time and my sister says I cannot do much about it.

AMMA NODU(LOOK AT YOUR MOTHER) SHE LOOKS AT ME

Sushmitha's nurse Sushmitha and she turned to her direction and then she asked amma nodu she looked at me. I was very happy. She asked again and again she looked at me. Again next day also she obeyed command amma nodu. The next day she got up from sleep and laughed at me. I can spend my whole lifetime now happily. Her one smile has given lot of strength. I don't want anything anymore. After a long time I can sleep peacefully.

GOLDEN WORDS BY Dr PUSHPA KINI-IF YOUR PRESENCE IS MAKING DIFFERENCE IN SOMEBODY'S ( SUSHMITHA'S) LIFE THEN DO IT.

When you get emotional support it will help you to move forward. Dr pushpa Kini also said Geetha when there is happiness everybody gives support but in times like this only few remain with you. very true. Even I remember neuro surgery Dr Muralidhar Pai telling me If certain things are going to happen they will even if you don't do anything and if they cannot happen they will not even if you do anything. I think what he meant was if in Sushmitha's destiny recovery is written she will recover without us doing anything. After coming home Sushmitha vomited manytimes. May be all the antibiotics are increasing her acidity. I phoned to Doctor and she told me to give pantodec till the day antibiotics are given.I don't want anything in life. If I ask god I know he will not give. Atleast let him help me in looking after her nicely in future as i do now. Even he should give us finnancial stability also. Because these physiotherapy sections are certainly very costly.

URINARY INFECTION AND 103 DEGREE FEVER AND HOSPITALISATION

Sushmitha had 103 degree fever. So when I phoned Dr Pushpa Kini she told me not to worry and come straight to hospital in case of emergency. I decided to wait till morning. Tepid sponging was given and fever came down to 102 degree. Morning We went to hospital and we were admitted because of high fever. Evening in the hospital room Sushmitha started to vomit. again the fever rose to 103 degree. Feed came out from the nose and mouth. I was in a panic and I cried loudly when a PG came in as if god send and told me to calm down and assured me Sushmitha was allright. They put the IV line. Fever continued for many days(3 to 4) and she was sleeping the whole day. She then had loose motion also. She looked very weak. Anitha is saying this intense physio is causing much discomfort to chilld according to mom. As my husband doesnt support much I cannot function alone. So she told me to relax myself a little. She also told me hospital days are bad and she knows it but I should learn to laugh and give everyone happy atmoshere to work because the nurses or any worker wiill only lie to work in such a situation.

DRINKING FROM SPOON TO CUP AND NEARLY HEAD CONTROL

Inspite of frequent change of physiotherapist we were able to attain more of neck conrol and attain better swallowing.She was having constant sleep wake cycles also. I was invited to Rotary for its thank you function by Prabhath. Every body seemed to be so happy except me.sometimes she locks the leg while standing. Visually also she is better. Credit goes to Watson Sir. He is very concerned about the child. There was a misunderstaning created by somebody .I cleared the misunderstanding. It is so difficult to convince somebody even if you are innocent.

COMPLETING ONE YEAR OF COMA

sushmitha is comleting one year of coma. Her birthday is on june 20th and this incident took place on june 23. I remember you wearing nice dress on bithday and looking very beautifull. I gave sweets to three schools. I wish I was able to rewind the time. Sushmitha...... Sushmitha....... Please say O amma(what mummy)

MORE SLEEP

Sush is sleeping throught the day. So I am not able to give the stimulations. I want to improve her. I feel defeated. But I am not going to give up. She has fought for life and I am not letting her go. Child, I long to hear amma from you, but it does not matter if u can't. I will love u the same. It does not matter if ur dad does not care for u. I long to hold u in my lap like before. I want to eat masala poori with you. I want to take you to parlour.My life will never be the same without you. Your birthday is coming near. And after your birthday on june 20th-on June 23rd u went into coma.

SLEEP WAKE CYCLES HINDERING HER IMPROVEMENT

That day,

6:15 PM June 23rd, 2009 was the day everything changed for worse!

I got a call from Mom saying Sush had a seizure, I rushed back home and reached by 6:30 to realize she got another one that lasted more than 30 minutes. I gave her the Valium and tried to reach the local Doctors.

I reached the local Hospital and rushed her there, Ambulance did not have oxygen. There she was given Oxygen but they said I might need to go to Manipal as she may require a bigger Hospital.

Anil and My husband reached my side quickly and we were on our way to the Manipal. I cannot remember anything but remember thinking she looked so pale blue..

Dr P was not in that night , she was out of town. Her next in charge got Sush to ICU and they started IV line and oxygen and medications. I don't remember thinking anything , it was a blur.
Besides we had so many hospitalizations in the past that I thought this one would also last couple of days..we would be out.

Then came the shocking news, she was in Coma. My sister called and I cried my heart out.what was happening, why was Sushmitha in Coma..I did everything I could , gave her all the meds on time.why

They told she aspirated into her lungs. She has developed Pneumonia. She was not opening her eyes and was in Status epilpetus. Her Seizures would not stop.

Morning got Dr P and looking at her my heart was relieved. She will do something she always does!! She has saved us before and she will now i thought.

I was still in a daze. Dr P said I need to watch this carefully as excessive medications for her lungs might damage her kidneys. I need to watch this.

She called to sushmitha to move her hands and she lifted her hand the second day. She was still in Coma they said. I knew She was battling her life ,I silently kept talking to her in my mind as we were not allowed inside all the time. Anil took charge of his sisters care. He was by her side 24/7 watching like a big bear , he sent me off on errands Knowing I needed something to do.

The 3 d day she started blinking her eyes. But it was not a happy ending. She also started thrashing around and started moaning like she was in great pain. we could not restrain her and she ended with bloody legs and we had to put her in a bandage.

Then they noticed blood on her catheter. Some one whispered there was internal bleeding.
Could it be her kidneys, I had no idea. I was numb with Shock of it all. She had tubes everywhere, she had IV lines and Catheter. She was given nebulization constantly. They also came started suctioning out saliva as she could not swallow. She was still on oxygen.

I started spending time with my sister on phone and sitting near by baby watching her. Eat and shower and then back to her side. Anil took care of me and her both , for a change he was like a parent. He was only 21 and acted so mature for his age.

Nothing changed in a week except both me and Anil developed back pain sitting by her side watching and changing her. ICU does not allow anyone to sit and we did not have proper seating. we were glad to be allowed inside as many would not allowed inside.

Sush was very Agitated and had constant jerks , twitching her legs and hands. when we held her hands and soother her she was a little calmer. Se also started moaning , meaningless mumble.

It was so hard to hear her moaning and twitching non Stop. Some days she would not sleep nights and even tore at her Iv lines.

That Day.

My Dad had cancer

May 2009, Dad was diagnosed with pancreatic cancer. We were shocked, he was hospitalized and chemotherapy started. Mom went into a shock, we had calls from everyone.

Life was in a roller coaster. Dad was in and out . I managed to run the home with Sush and running to the hospital. Doctor said he will not live much longer. it had metastasized.

We could not do much, we three sisters talked on conference calls. Decided to do what we can for him. Dad was Dad. We never were close to him as much. He was a quiet soul but he did his best or us.

I did not know worst was yet to come..

How it all started

I did not wanted to share my story with the world but my sister wants me to. She says it will help others someday, it might even make many people appreciate what they have today.

where do I begin, I must start from the very beginning before Sush ended up in coma.Her life that was filled with so much , how people loved her in karkala. She loved life , she was always laughing inspite of all the pain she had , medications she had to take, hsopitalizations. she went to school, she went to dance classes like other kids. She love eating bhel , she loved washing clothes with the maids, she sooooo loved animals.

She was born 1998 June 20th, a year after Deeksha was born. Deeksha is my niece that my sister had left in my care for a year, i loved her like my own. Looking after Deeksha I wanted a child of own..Anil was already grow up.

So sushmita , was born, she was so beautiful everyone said. She was 6 months when we noticed her knees twitched all the time and took her to the doctor. Thats the begining of my Journey.

She was diagnosed with having epilepsy. They call it fits in India.People thought it was contagious in India for some time. The endless trips to the hospital began , we started seeing different doctors and were always in some new hospital running a newer test.

My mother was always there with me helping me , as Sush would have seizures sometimes 20 times a day.. it went on like that until she was a year old. Then we hear about Dr P. She was the angel that God sent to me , well I did not think too much about it untill now. At the time she was for me the miracle Doc who helped my child stop having seizures. At least she would not have one that lasted a day.

Now and then she would have an attack in a month, or sometimes in a row in week. some times it would not come for about months. Sush continued growing like any other child with normal fits and excitement. She was slower than others. She had motor co ordination issues, she had learning disorders. but she loved what life enabled her to. She loved people instantly. She loved everyone including the maids that were hired to look after her.

She loved me and that still is the most beautiful thing that ever happened in my life. Her love filled my otherwise empty world. There was nothing in my life as my husband was too busy working and my son was caught up growing up.. sometimes I am guilty that I was never there for him as Sush needed so much hospitalizations.

He loved his sister too much, who would not?? she would call him Anil Anna( Anna is brother in konkani). She always wanted to people to love her. Moke madu she would ask us which meant I wanted a hug.

once my sister moved to US my parents moved with me as I needed help with Sush a lot.

Life was begining to Settle down, I joined Chethana School for kids with special needs. I though life had a new meaning for me now that there was something I could do to help other kids with Special needs. I helped the School collect funds, went to anyone that would donate money to the school. Even made my husband donate hefty amounts to school hoping some how helping others would help me too. Eventually I fell in love with those kids, between my Chethana and Sushmitha my life was going on as smooth as i thought life could be.

I was not content with life. I complained to God once a while, why did you take my sister so far away from me? she was my best friend, my mentor and my sister everything as I was to her.

We always hung out together, we were different than others. We never needed anyone else in life if we had each other for company. Then one day my sister moved to US. My life changed then but i had mom and I had you baby, I had you.

A SMALL RAY OF HOPE

I am very sure she shows tongue now. First she used to look at Dimple for sometime then after her much telling to show tongue she used to bring tongue out(not fully). Then she started showing just by giving command- jeeb dakayi. Even while she was eating sugarcane she used to watch Dimple then wait for her to say kacchu(bite) then again bite and stop again untill she says kacchu bega bega(bite fast) They are changing physiotherapists every month.So what one achieves if other person does not follow that improvement goes.Even they have more patients in thier clinic so thier time is also reduced.So when she is improving I am having these kind of problems.We are now paying Rs 15000/ for month. I think best option is hire some physiotherapist and hire him fulltime.

Sushmitha hospitalised so again that hindered her improvement

Sushmitha had stiffness in left leg. So physiotherapyst Dimple gave extra steching. She developed swelling in vboth legs. So she was given ice pack treatment. This led to severe cold and this again led to fever. She had rapid breathing. So I panicked and phoned my doctor she told me to come immediately. When I thought she was improving I never expected this. Again it will take another week for her to recover. She was much awake in the hospital. So in the discharge summary they wrote she is more awake now which she is. I saw her turning neck and seeing but that is also restricted to one side she turns mostly to left.

Shows tongue.

Today I felt she was showing her tongue after i said zeeb dakayi(show your tongue). I felt happy.But mom said what is the use if she just shows tongue, if she can say amma then atleast ok. I told mom that also she will do. let her do this first.today she has much cough. She has tightness in the legs. So Dimple gave extra stretching. Both the legs developed swelling. Then they gave ice rub to reduce swelling. Now she has cold. Hope it will not increase and cause fever.

Please anyone save my child

Now physiotherapists are giving severe physiotherapy. They are making her sit by holding her hands and bringing them forward. Putting her upside down. with her head down and the lifting her. It looks very scaring to me. God save my child.

Pleae call me Amma which i long to hear

Sushmitha is improving physically. She is gaining neck control.She looks at people now. I dont know if she will call me amma again. Few days back I had gone to Udupi and her face kept coming in front of me. I am just happy she is alive and I will care for her as long as she lives.But I dont know whether being alive is torture for her. I dont know how she feels. I am trying in everyway to make her sit and eat by giving a bit of swallowing but i dont know whether she wants all that. Anitha tells she may not want to sit and talk or she just can be very much tired or she just cannot do all these.But I just want you to call me amma my dear. I want to hold you in my arms once again.

I WANT TO DESTROY THE WHOLE WORLD

God you didn't give me a normal child. Did I complain you ever? Then why did you make her go through so much pain.I hate other children. I dont believe in you anymore.Now I know who cares for me really. Sushmitha used to adore her father. he seems to have no time for her. He is busy in pooja's and he tells it is done for her sake only.Anil seems emotional but he is also busy. My mom also didn't want Sushmitha. But there I was wrong. I went to Mangalore today . I went at 2PM .and came back within 5pm. Now physio Shruthi comes for physio. She gives hot and cold water for stimulation. She makes her sit unaided. With minimal support to head and shoulders so that she aquires shoulder control. She has a bit of swaloowing. So she gives sugar water for taste.Anitha feels this all is going very far in the sense this all is too much for her. so Anitha tells I am selfish so I want her to get well for my sake. But it may not be the same with her. May be she does not want to talk or walk. She might be too tired.So anitha tells her now what is more important is her comfort. Yeah I admit I am selfish. I waznt her. But I want her comfort too. help me maintain balance of both.

FOR THE WORLD YOU MAY BE SOMEONE BUT FOR ME YOU ARE THE WORLD.

DOES SHE HAVE LANGUAGE COMPREHENSION?

I had 2 nurses to look after Sushmitha. Now both are leaving the job permanently. My brother in laws son got married. Sushmitha would have enjoyed the family function. She likes being in stage.How she liked the dancing onschoolday. I sometimes feel she can understand somethings. Like when Anitha told to look at your mom she she shifted her gaze towards me.We were in hospital on 6th. So when i asked we will go home she said ha. when coming back from ambulance I asked her should I hold you tightly she nodded her up and down as if she wants to say yes. Today mom told her i want u and nobody else she again told ha.

whether in coma stage it is advisalble to move in wheel chair

Day after tomorrow is my brother in law's son's wedding. World looks so boring without you. I don't want to go anywhere specially for the functions. I cannot die I cannot live.My husband is so busy that he cannot share his pain with me.She would have surely enjoyed the wedding.She would have been so happy.I would have surely brought her a nice drees, she would have certainly looked very beautiful. The physio works very hard. Surely the pressure is more with Sushmitha. I get afraid. like in coma stage whether it is advisable to move her in wheel chair without neck control.whether

I want to thank all doctors of Sushmitha

sometimes i feel nobody understands me except for Anitha my sister and her doctors Dr Pushpa Kini and Dr Muralidhar Pai. In the middle I had a breast cyst and there again doctors are nice. Why cant you be nice too o god?

why god? I never complained to you when you never gave me a normal child. she used to have fits regularly.In school she had difficulties in studing and writing. But each day she got better and I thought it was because I worked for special children without any selfishness on my part.I thougt if I am good I will get all the good things in life. but now you pushed her to coma stage and I will never forgive for this. You come in front of me.I am not asking for boon but I want to slap you for what you did to my child. But atleast you gave me financial support and thanks for thatWhy

The physiotherapist is good . She is minimally concious now.but i know i cannot hope much. At the same time i should give up either. I want her to say amma once.My husband has altered the house according to vasthu. but that wiill not bring my baby back.

sushmitha is little better now. she has a bit of swallowing

Sushmitha is my world

I wanted to cry in private , i wanted to share nothing with the world. But after a while I thought over it and may be it will help some one to know.

I hope people read my blog and understand how it feels to be a mother like me. how it feels to look at your daughter lying in the bed unable to move , unable to tell you where it hurts. Days pass and she lies in bed with no changes. This is a living hell. No matter where you go you hear your baby calling you mommy please help me. yet you cant help her. There is nothing you can do.

The science has come up with so many new innovations and yet Doctors are helpless when they look at my baby. I can see they want to help me yet I see helpless ness in their eyes. They tell me they are not God, only God could spring a miracle. But God has done nothing so far except give me pain , then more pain and then agonizing pain. but why God? Why my baby???

She was the most loving person people met , they tell me that. when she was well she was full of life. She gave me something to live for and she made me realize life was not perfect and yet I loved her more as she was different. I gave her everything life could give her and she was a brave child who thrived on the love we gave her.

People used to point and they used to talk. I did not care. I had you baby I had you. let the world laugh at you but I will make you strong I had vowed. at times I was harsh on you so you could do better and I know you still loved me.

Why are you silent today with no words and no laughter to fill my day. Dont you know how l long to hear you say amma. Dont you know I long to hear your fuss that soemthing was not right. I long for you to throw a fit over why your favorite breakfast was not made, and Grandma would hurry to fix it for you.

I miss the morning sunshine you used to bring with your laughter and your smile. I miss everything we did together. I don't know why God chose you to be his big test. I dont even understand his test my child. I refuse to give up and refuse to accept.
People tell me to accept this as your fate and move on. you have to live. But I know I cannot move on without you. My soul is attached to yours and how could you separate both, no one knows that. But you do.

I am too emotional to discuss why it happened and how it happened. I hope someday you will read this and understand our 11 year journey to this day. Every moment i spend is precious to me no matter you cant say things or may be you dont even know all this is happening around you.

This is my blog for you my child , where else can I talk