Mission - July 15

I have never been slim in my life. Until my mid-teens, I never realized that - probably because no one pointed it out to me. So, I was my happy self and never gave it a thought. But since the time I realized that I was slightly over weight, I have made numerous 'failed' attempts to reduce my weight. Ironically, that was when I started to gain weight to become what I'm today!

Over the years, I have tried all possible weight loss techniques - dieting, exercise, gym, yoga, swimming, walking,.... the list would go on and on. But, I'm too lazy to practice any of this beyond a couple of months.

My weight is now on a all time high. For a few months now, I've started to avoid looking at the mirror as much as possible. I have also been avoiding to have my photo taken. But, things have to change. I'm now on a mission.

My mission - to lose as much weight as possible by the 15th July. I don't aspire to become slim. I just want to become presentable . Because, my son would turn one year on the 15th of July this year and I want to take a lot of pictures with him that I could relish for years.

Since last week, I've started on aerobics, walking and dieting. So, in a couple of months, I would hopefully be able to flaunt photos that I have taken with my son instead of having them hidden in my camera in the fear of criticism.

Vignesh - In his Various Avtars

A Disturbing Blog

In the place where I live, we do not have any support group for Down Syndrome. Of course, there is a down syndrome center to provide counseling, information and therapy. But no support group. So, I'm interested in the blogs written by parents of DS children because I personally do not know any parent of DS kid and these online stories are the only way to gain insight.

Among various blogs, I sometimes read a blog written by mother of a down syndrome teenager. I used to check her blogs regularly, since she was a regular blogger and almost all her blogs revolved around her daughter and DS. But, I soon found some of her views disturbing at times, so I stopped reading her blogs. But, I do check her site from time to time just to know how the girl is doing.

After a long time, I just checked her blog today. And, one of her blogs really disturbed me. She had narrated how after the birth of her daughter, her other kids(really young) were scared of having a down syndrome children themselves. And how she spoke to them and said that they would probably be having normal children when they grow up and they need not dread about having a DS child.

I was shocked to read this. I wonder how these young children came to the conclusion that it was bad to have a child with down sydrome?. A toddler's behaviour could not have been so scary to make them dread of their own fate in the future! So, what did they hear from people around them that has made them dread about having a down sydrome child? Why were they not told by their mom to first give their baby sister a chance to grow up and see what she was capable of before drawing negative conclusions!

Of course, there are times I wish my son did not have down sydrome. If not for DS, he might not have avoided certain medical complications and he might just be playing usual games instead of being bothered about PT and OT. But for it, I'm happy the way he is. Sometimes, I feel that he is being such an angel because of the extra chromosome and I'm thankful for it. I'm so proud of him . He is handsome, smart and intelligent. I know he is born with his own set of talents like any of us.

Its time we stopped limiting the oppurtunities for our angels in the name of acceptance. Let us stop branding them or sterotyping them in the name of acceptance. Like all of us, every person with Down Syndrome is unique. Like all of us, they need opportunity, time and support to showcase their talent. Like all of us, they can achieve too. But for all this, you need to first give them a chance. And, more importantly do not judge them before you give them a chance.

They are born fighters. They can make a difference to this world given the right kind of environment to grow in. Come let us work together.

The Call

Since we wrote to the doctor on Friday morning, my husband & I were frequently checking our account to see if we have received a reply. We checked our inbox at least a couple of times every hour. We told ourselves that doctors are usually very busy and weren't so computer savvy and it might be a while before he checked his email and got back to us. We also had the doctor's mobile number and since we did not want to disturb him, thought we might wait till Monday morning for his reply before giving him a call. But, we were growing inpatient nevertheless especially because we desperately wanted our son to be out of tracheostomy but did not even know what the next step was.

It was quite a pleasant surprise when my husband received a call from the doctor on Saturday evening. In our email to the doctor, my husband had included his phone number in the signature but never expected him to call. The doctor informed that a CT might not be necessary at this stage and asked us to come to B'lore to carry out fluroscopy. He also told us it might take 2 or 3 days to complete the tests. He also informed that the doctors there would be extending all possible help. We were excited on the progress and have decided to leave to Banglore on Wednesday giving a weeks time for any edema caused due to last wednesday's bronchoscopy to settle down.

Hopefully, we would have solutions to my son's health problems by the time we come back.

What Next?

Even as I was looking for some good news, I was being told that the doctors at this hospital did not have experience in handling this problem. They were struck too. They said these sort of cases were really rare and there might be very few surgeons in our country with experience in this field. And, this was one of the best hospitals in my country and in fact the best one in my city. But yes, they were being honest and supportive. They felt bad about the way things were shaping up. I could see them wanting to help us with some sort of information. The head of the Pediatric Intensive Care promised us that she would do a research on this and get back us with more information. I wasn't sure how long would this be taking and would I have to keep reminding them about this.

I was totally confused. I did not understand a lot of things. That night I called a distant relative of mine who happens to be a pediatrician. Only after speaking to her, I was really beginning to understand the problem. Even she told us that it would be a better idea to wait for 6 more months and these type of surgeries were rare in our country. That there were about 3 different surgical approaches to rectify Subglottic Stenosis but just one or two types of procedures are practiced in India. She also said that there still exists a slight chance that it could heal on its own in this 6 months.

The very next day, the head of the pediatric intensive care came to my son's room and informed us that she had made a few phone calls the previous evening and gave the details about a surgeon in the neighbouring state who specialised in these kind of surgeries. She had even spoken to the surgeon about my son's problem and he said the success of the surgery depended upon the location of the stenosis. And that he could not comment without having the details about the size of stenosis. He has also informed that we could qualify for some financial aid for the surgery since a surgery might mean a prolonged stay and expenses in the hospital.

So, yesterday morning we have emailed the surgeon describing my son's problems. We are eagerly waiting for his reply.

As of now, we do not even know the next step. such as what is the test that needs to be conducted to get further details about the subglottic stenosis or what is the probability that the narrowing could heal on its own. It is frustrating to feel so helpless and sit without knowing what to do next. Hope the doctor responds to the email soon.

In the meantime, I have started exercises for my son. I put him on his tummy and with some help from my end, he is able to hold his head up for a while. I have also started my research and trying to post questions in different forums across the world. Even as I wait for answers, I'm hoping that the stenosis is cured on its own without a surgery. After all, Miracles can happen to anyone, at any time. Hope its our turn now.

Huge disappointment

When I saw the tracheastomy tube intact on my son's neck, I felt numb. I was just blank. I was wondering as to how much longer would the doctor ask us to wait before giving a next try. The ENT's face was extremely grave. I was surprised that he should look so upset.

So, as he started to explain, I was listening with a smile. The optimism mask was taking over. Probably a few more weeks of waiting. It was after all not going to be so difficult that we were sort of used to the tracheostomy! But, then I heard the doctor saying that his edema hasn't reduced even a little bit and that his bronchoscope could not even advance beyond the voicebox. I was shocked! In a minute, all my optimism vanished! Not even a slight improvement in six weeks???? He was saying that it now did not look like a case of simple edema. There must have been scaring due to the ventilator and that it might need a surgery to rectify the problem. However, it can heal on its own too. Probably we need to wait another 6 months...

I was losing hope. There were tears in my eyes. I was just half-listening to the doctor. I could hear him saying that we could give a try after 2 months. But, somehow I began to feel that even after 2 months nothing is going to change. I felt that the tube would be staying for a long time and that we all need to get used to the tracheostomy. There were whole lot of things that I had put on hold so that it could be done after the trach was removed. Now, it looked like things could not be postponed anymore. My son's PT and OT needs to be resumed, flash cards needs to be introduced and there were so much things to be done!

Ironically, despite tears in my eyes, I was smiling even as the doctor was explaining - have I gone crazy or was I just wanting to show off that I was a strong woman? I did not have the mood to introspect.

Its Wednessday Finally!

Well, my post has come earlier than monday. This can only mean one thing. That decannulation did not happen. Else, I would still be in the hospital with my son for observation.

So on Wednesday evening, when they carried out the procedure for my son in the PICU, I was just waiting outside and the door was wide open. It was so difficult to wait there in suspense. I felt like taking a few steps and moving the curtain to see if decannulation was successful. I was standing quietly so that I could hear something - something positive! I was discussing all probabilities with my husband but tried to be postive. Why was the procedure taking so long? Was it because they have decannualted and observing him for sometime? What is the nurse taking from the cupboard? Could it be a manual ventilator? I could not take the suspense anymore and my head was banging. I asked my husband to call me with the good news and went to take a quick bite. When I was back the procedure was still on and they asked me to wait in the counselling along with my husband.

So, finally we were called. My husband entered the room but I was waiting outside because I thought I could not take the bad news that we might have to wait for some more time. I was waiting for see my husband smiling and calling me inside which would mean that decannulation was successful. But none of this happened! Someone asked me to go in. I still had my hope and optimism. Although the doctor's face said it all, I still had my hope. It was only when I saw my son (of course, my eyes just ran to his neck) and the nurse still using a manual ventilator to pump through his tracheostomy, did the fact strike me.