My Little Genius

Vignesh's Little Brother

2011-10-18T21:22:00.005+05:30

Vignesh has a little brother now :) Ramesh & I are happy to introduce our new born, Pranav. He was born on the 4th of this month.

Pranav with my sister

I can't wait to take a family picture especially with Vignesh & Pranav together. But, looks like Vignesh needs a little more time getting adjusted to the little one. :)

First day in school

2011-02-22T00:19:00.006+05:30

Today was Vignesh's first day in school. I'm taking him to the day care a couple of hours in the evenings, so that he gets accustomed to the place first. Once, he is used to the place, we'd be moving him to playgroups. I'm very happy with the school and the people there. Although, they have not had dealt with kids having tracheostomy or down syndrome, they are willing to give a try and see how things work. Its a nice place and I'd love to see Vignesh settle there and make friends.

The session started with rhymes and Vignesh enjoyed it. But, once the other activities began, he totally lost interest and got into a 'throwing spree'. We tried various games, but he was only vigorously throwing everything away! He was also trying to roam around on his own and stay away from other kids. I think he was probably shy and the throwing was his way of expressing it. Especially, when I saw that the other kids were so organized, I couldn't help but compare and panic. I know I'm being unfair and it was his first day and all. But, I think just like Vignesh, I too felt lost. Thankfully, the school director is a very understanding person and she made me see I was being unfair.

I'm just waiting to see how Vignesh is going to do tomorrow. I'll need to discuss with his OT about this too. I'd love to have suggestion or advice from other parents.

I'm too tired and sleepy. It well past midnight here. Today, being a special day, I just wanted to make sure I keep a record of this day. Before I log off, here are a few pics from Vignesh's first hair-cut:

Excellent November!!!

2010-12-20T16:06:00.013+05:30

This past month has been amazing!

Vignesh started to pull up and stand without support and could now stand on his own for about 5 minutes.

He also took his first step without support (now, he just takes a step or two on his own)

He has begun to climb up and down sofas and beds. He has now started climbing chairs and staircase.

He has also learnt to turn on and off the switches and calling bells (Just love the way he turns to see if the light/fan turns on once he is switching them on)

He has also started to hide and make his mama run around the house searching for him.

And, last week he wanted me to play his rhymes dvd. When I din't, he took 2 DVDs and see how he tried to play it on the television! lol!

In the beginning of the year, Vignesh began to pull himself to stand, crawl, cruise and walk with support. But, for many months after, he did not achieve any new milestone and it was making me worried! Now, the end of the year is rocking again! I'm so proud of Vignesh.

Favorite Video

2010-12-11T00:41:00.002+05:30

Here is a video of Vignesh signing. Vignesh & I love this video.

Vignesh II year photoshoot

2010-08-26T13:13:00.010+05:30

We had Vignesh II year photography done about a week back. We just had a small celebration for Vignesh's 2nd birthday on July 15th . Din't want to miss on taking his portraits though. We had to hurry up with it. (You will you why when you scroll down to the last pic on this post.)

Here are the pics from the photoshoot

Performing for his favorite rhyme 'Listen to the music'

& 'Clap your hands'

Here is a photo of Vignesh in a different hairdo

And, this is the reason we had to hurry up with his photoshoot.

My cute little laughing Buddha!

This is a part of our custom. They generally shave a baby's hair once or twice between one to five years.

oh, I so loved my son's long hair! Can't wait for it to grow back again.

Quick update

2010-08-17T14:03:00.005+05:30

Vignesh had his airway surgery on the 22nd of last month. Doc wants to try decannulation after 4-6 weeks. Vignesh is doing fine and keeping me busy with his antics.

Vignesh Loves his New Potty

2010-05-03T22:39:00.005+05:30

After a lot of procrastination, I went to shop for potty yesterday. Got confused with so many varieties and finally got a basic model one:

When I made him sit on it this evening, he wanted to get down after some time. I thought probably it wasn't time for his routine. And, when he got down, I just saw how much he loved his new potty. Just look at these pictures. You'll see what I mean.

Just for the records, the potty was yet unused. So, you might get to see him continue playing with these toys for sometime. lol!

After his dad got back home, he just removed the toys from the potty and made him sit on it. And, yes Vignesh did it and even tried to climb down after that. So, happy that he inaugurated his new potty on the very first day..... ;-)

Milestones in the past 3 months....

2010-05-01T22:26:00.010+05:30

The past 3 months have been good (hope I don't jinx it again!) . Therapists play such an important role in our children's lives. So, switching therapist is one of the most difficult decisions.But, ever since we relocated in June last year, we had to travel quite a distance everyday for Vignesh's therapy. So, we had to make the switch. In Feb we got a new home-therapist for PT and in March we had home-therapist for OT.

However, after I switched therapists I had my own doubts and guilt. I was worried if I was placing my convenience before my child's future. I was even contemplating going back to the previous ones, a lot of times. But, within a month, both the therapists did a wonderful job and have made Vignesh achieve milestones which I had been so worried about until then.

And, two weeks back I received a call from his OT that she would not be able to continue home-therapy due to her health condition. She has been advised against traveling by her doctor. After her phone call, I broke into tears. I have become to trust her so much. Thankfully, she is now continuing therapy for Vignesh at her place and I don't mind traveling there everyday.

Thanks to my little hero's hardwork and his therapists' efforts. Here are a few things that my son has learnt in the past few months: (BTW, he has become so camera-conscious that I find it difficult to take photos/videos once he sees the camera.)

Pulling up to stand

Walking around the house on his own (with support)

Crawling (although he prefers scooting)

First step towards self-feeding

Enacting 'Listen to the music and clap your hands' ( it took me sometime to understand why he was catching his ears after clapping his hands)

More about Vignesh playing games soon.

The right to dream!

2010-04-30T22:11:00.003+05:30

Today when I had taken Vignesh to OT, I had to wait for a while. There was Parent-Teacher meet happening in the adjacent room. In addition to providing PT and OT, the center also run a small special school and a few kids study there. Its a very small place but they are extremely committed in their work. Since the place was small, I couldn't help hearing the conversation that was taking place. Although, the parents were discussing simple things like numerals and day-to-day activities, their voices were filled with pride, dreams and the aspirations for their kids.

I remember an incident that happened last January. My son was not even 6 months old then. I had been trying to find a good therapist and was asking details from one of my close friends whose little cousin was undergoing PT for CP. All I wanted was a reference to a good therapist. But, when my friend calls back, she tells me how the therapist said that if I start early my son could be trained. So that when he grows up, I could set up a shop for him to work and take care of. And, she sounded excited about this! Excuse me! Doesn't this sound crazy to anyone or is it just me?

Why should people be discussing what my son would be doing for his living twenty years from now, just because he has special needs? And, why does she expect me to be excited even about the prospect of my son a job? I just wonder if this friend would be as excited when I tell her I'd set up a shop and wouldn't mind employing her children there too.

Its isn't about the nature of the job. Its about the attitude. That is when I began to understand how people expect you to stop dreaming once you have a child with special needs. I dreamt of so many things I wanted to achieve professionally and my parents had so many dreams about me too. And, I don't think I have fulfilled any of that. So, when they give chance to me, why shouldn't people with special needs be given a chance too? And, when my parents had a right to dream about my future, why shouldn't I do the same about my son's? Why should people talk about acceptance when I have high dreams about my son's professional future when the same people can dream about their typical kid's future even before they know what their kids are capable of?

The point is I do have all the rights to dream about my son's future. And, when my son grows up, he can choose a profession that suits his skills and liking. If my dreams come true, I would be happy. If not, I would be equally happy too about whatever he does, just as my parents are happy about me today.

I just hope that these people realise that our kids are too young for their advice or career guidance. And, if they really need them, we as parents can handle the situation without their help!

Carly

2010-04-29T13:42:00.002+05:30

Rest in peace, beautiful Carly!

May God give strength to the George family even as their little angel is flying high in the heaven!

Vignesh with Specs

2010-04-05T12:36:00.008+05:30

Vignesh with glasses

He took it better than I expected. At least, he has it on for a few minutes before trying to throw it away. Not sure, if its because it helps him to see things better or if it is too close to his eyes for him to notice it.

This is how he would look if he was my daughter. lol! I better hide this photo before he grows up and kills me for dressing him up like this. I'm going to miss his long hair after July.

Vignesh's second trip to the beach.

I choose to post the dark picture deliberately. You know, until I reduce my weight, I prefer to stay in the dark. :P

Down Syndrome Celebration - Part II

2010-03-20T00:13:00.008+05:30

Kids and their proud moms

These girls were so talented at keyboard

Dance and Expressions

All of them having fun dancing to Jai Ho

Eye glasses

2010-03-17T20:26:00.003+05:30

Last week we had eye appointment for Vignesh. His previous eye appointment was done over a year back. And, he had positive power in his eyes. Since he was just 5 months then, the doctor had wanted us to wait.

So, when we went last week, they checked his eye and the power still remains the same. Since, +5 is significant, they have recommended glasses. I was reluctant. I cannot imagine my son wearing them at all. Because, he hates any 'extra accessory'. Be it a cap, sock, shoe and sometimes even diaper, it irritates him. His trach tube and thermovent on his neck are outside his line of vision. And, yet he tries to pull them. How do I make him wear glasses thats going to be right in front of his eyes? I have no clue. And, seeing our reluctance, the doctor told us that he might end up with a squint, in case we don't go for glasses. And, she also added the usual statement that how DS kids are already delayed in milestone and without glasses there would be further delay.

Over the last few months, I have come to have more trust in the advice and judgment of other parents than even doctors. So, I wrote about it in the downsyn forum and wanted to know if anyone else has been through this. And, most of them had wanted me to follow the ophthalmologist's advice.

A piece of good news though. I heard from an optometrist that as he grows and the eye lens gets bigger, the positive power would come down and that glasses might just be temporary thing. Ironically, we get similar comments for his tracheostomy too. As he grows, his airway would widen and he can be easily out of the trach. Oh, how I wish there was some magic formula to make his grow fast!

Now we are left with no choice. But, we still have the prescription safe in our bag. We are just procrastinating getting the glasses. I'm tired being behind him all the time to make sure he is wearing his thermovent. So, its going to be one more challenge. Just wish me luck.

Not always sweet!

2010-03-16T19:22:00.003+05:30

After spending about 18 months with my son, I'm just learning that other side of Vignesh. I have always defined him as sweet, whenever someone asked me about him. Probably, he got bored about the tag that I was attaching to him. So, today he showed me the other side of his personality.

We had an ENT appointment in the morning and reached home by noon. His eyes were tired and after spending a few hours in trying to make him sleep, I gave up. Gave him a late afternoon bath and took him for walk.

He usually listens to music on my cellphone all through the walk. But, today it slipped and fell down twice or thrice. And, somehow he began to enjoy the game. So, he began to deliberately throw it and look at me to pick it up. And, when I refused to give him the phone, he began to pull his trach tube.

He knows too well that scares me and makes me angry. But, he thought that was the best way to get back at me. I was a fool to doubt if my son understood things around him. Today he just showed me how much he knew me. I tried to test him though. When I gave him the phone he would start playing the 'throwing it away' game. And, when I refused to give, he would turn towards me and try to pull out his trach tube. And, I tried both sweet and harsh methods, but he was so keen on driving me crazy.

I would have enjoyed his smartness if it had been anything but the trach tube. The tube is his airway and his breathing and life depended on the tube.

I'm so tired and I have been waiting since afternoon to take a little rest. I don't have energy to deal with him today.

Thankfully, his OT was postponed to evening. He is now in his OT session. I can hear from across the room. From his OT's voice, I can understand that he is giving her a tough time today. After the session and dinner, he should be going to sleep. Hopefully, he will be back to his sweet self tomorrow.

Down Syndrome Meet - Part I

2010-03-14T19:53:00.003+05:30

The Down Syndrome Federation of India had completed 25 years and they celebrated the milestone with a grand celebration last Sunday. When we went to attend the event, we thought it was going to be a parent's meet sort of a thing. I was so excited because I never got an opportunity to attend any such meetings before. I love to connect to other parent s of kids with DS . Its like meeting someone who speaks the same language as you do. Someone who can really understand you. Someone to whom you don't have to explain things. Someone with whom I don't have to be on guard all the time to make sure they don't say things that might hurt my son's self esteem.

OK, getting back to the meeting, we were little prepared for what was in store. We were pleasantly surprised. Even as we entered the huge hall, the entire room was dark. And, on the brightly lit stage on the other end, were two young adults with down syndrome with their keyboards and one of them was playing a music. I still do not know why, but I broke down immediately. I was happy and yet I couldn't control my tears. I'm still trying to figure out the reason behind those tears.

The two young adults were wonderful with their keyboard. And, it was followed by a lot of other events. The kids and adults from different special schools from all over the state had come to perform and it was so wonderful to see their enthusiasm. They all just rocked.

Indian classical dance is called 'baratha naatiyam'. In this form of dance, expressions on the face are as important as the movements. And, they were a few girls who had such excellent expressions and they were able to coordinate their movement and expressions at the same time. And, I was so happy to see a particular guy dance for a song. He was actually using his flexibility to perform complicated dancing steps which non-ds community would find difficult to do. And, he did not forget even a single step in the entire song.

And, they wanted all the kids on the stage. Even as I was walking towards the stage with other moms and their young kids, again my eyes began to flood. I was worried if I would end up crying on the stage. Thankfully, I got busy with waking Vignesh up and getting him to feel comfortable to the bright light. It was so beautiful to see all those kids there. And, they played a song from a movie. Some kids stood up and danced. And, even some of the the younger ones began to rock on their bum. Its was so cute. Vignesh just woke up and he was just trying to figure out what was going on.

It was their day! Some of them were perfect in their performance, some tried to be at their best and some needed help to perform. Each one was unique just like their non-ds peers. But, there were a few things that was common among the kids and adults I saw on the stage. Not a single person feared being on stage or performing before a huge crowd. And, instead of trying to please others, they just forgot the world around them and truly enjoyed what they did. I guess that is a lesson that the world needs to learn from them.

I was so happy to be there. I'm so thankful that the Down Syndrome Federation of India decided to celebrate their 25 years the way they did! It just made me realize how happy I felt being a part of the down syndrome community. Our kids rock and I'm so proud of my son's extra chromosome!

P.S: I hate myself for forgetting to take the camera. Anyway, will get in touch with the down syndrome center and try to get some of the photos and post it here.

I'm back!

2010-03-09T11:36:00.010+05:30

After a long break, I'm finally back. I missed reading my favorite blogs. I missed sharing stories about my son with my friends. I have started taking up freelance work and it has been keeping me away for a while. But, I truly missed being away from the wonderful blogging family.

First, I want to thank my good friend Lee. Lee and her son Gabriel have always been an inspiration to me. Through her blog, I came to know about Gabriel 's excellent reading skills. I decided to start reading to Vignesh and wrote to her with a lot of questions. She answered my doubts and even offered to prepare a customized book that could get Vignesh interested in reading. It was an excellent gift that we would always treasure. Here are few of the pages that she designed for him:

Thanks Lee! I'm so touched by your friendship and guidance.

Lianna has written an informative post on how she went about introducing books to Gabe in her blog. You could also watch Gabriel reading by clicking here. They are so cute and inspiring.

And, to other updates, we have started home therapy for Vignesh since Feb. This means he won't be traveling everyday to the therapy center. Since he loves going out, I take him out for long walks in the evening.

He listens to music from my cellphone throughout the walk. I don't know why, but people find it amusing to see a 'baby' (grhhh....thats how people usually address him) listening to music with such interest.

And, sometimes when his father takes him out for walks at night, this is how he comes back:

I'm so happy that Vignesh has begun to cooperate a bit when we try to make him walk. He is now moving his leg forward (a few steps at a time) on his own. This is huge because for months he refused to budge whenever the therapists tried to make him walk.

Vignesh had refused to drink water for a long time. Now I have found that he is happy to have water when I give him directly from a water bottle (such as kinley) or from a glass. He doesn't want to use feeding bottle for water. If he thinks he is such a big boy, why can't he eat on his own! But, who can question him? He is the boss at home.

Thats it for now. Got an early appointment for his eye and ear check up tomorrow. Will keep you all posted.

Horrible or plain funny?

2010-02-13T22:20:00.003+05:30

Having a child with medical conditions , we have a lot of challenges in our way. This is the time when we learn who our true friends are and who aren't. And, there is a third category of people. People who neither stay by your side nor stay away. They are the real troublemakers who make things worse just for the sake of it. Yes, people like this truly exist. Don't believe me? Just read on.

After my son was on trach, one of my aunts came to visit us after we got back home. Having secretions and suctioning them out is a routine procedure in tracheostomy. But, this aunt of mine was so convinced that my son was having cold. Especially, after she saw me mixing his formula with 'unheated' water (FYI, it was aquafina). No amount of explaining would satisfy her and soon after, I kept receiving phone calls from a lot of people advising me to give my son boiled water to avoid him catching 'cold'.

This is the incident that made me write this post. Last month, I had gone to Bangalore for my son's ENT check up and I stayed at another aunt's house. During the course of conversation, I learn that aunt1 (from the prev. incident), has been going around telling people that my son is facing all medical problems because of me. I thought it had something to do with the stupid water thing and tried laughing it off. Later I learn that it had to do with something that happened about a decade back and it has absolutely nothing to do with pregnancy or child birth. How could she even think of such a connection!

It took a while for me to understand that she had been seriously propagating this one. I was shocked and deeply hurt. I cried. I was angry. I thought once I got back to Chennai, I would take it up with her. But, would it really make any difference? She is convinced about her stupid theory. So, why bother. Plus, I don't have the energy to go about fighting or feel the need to convince her. At least, this time she does not have the nerve to state something in front of me. Thats an improvement!

I met a mom at the Down syndrome center about 2 or 3 months back. She is a real inspiration to me. She is young and if you meet her, you would know how much she is pushing herself to bring the best out of her daughter. True to my heart, I know I can never be like her. Her daughter (with DS) is one of the brightest girls I have seen. So, during our last meeting, she tells me how her MIL is blaming her because her daughter does not have a nasal bridge! Excuse me! I see this woman fighting against all odds all alone and in stead of appreciation she is being held responsible for her daughter's lack of nasal bridge?

So, there are a lot of such stories that happens to me or I get to hear from others. I just wonder, what are we going to be blamed next for ? Climate change and global warming? I wouldn't be surprised! I don't think these people are really worth our time and anger. Wouldn't it be easy if we just ignore them? At least we could have a good laugh at their folly!

Disturbing comments on down syndrome

2010-02-11T14:07:00.001+05:30

Yesterday, I was visiting one of the local online forums. The forum has plenty of categories from cooking to books to pets to almost anything that I could think of. So, I was just curious if they have a separate category for ‘kids with special needs’. I searched for it and couldn’t find any.

I tried to search for ‘down syndrome’ in specific. The topics that came up were mostly on ‘amino test’ showing positive result and doing away with the pregnancy. And, one specific topic was so disturbing. A lady whose results has come positive for down syndrome had written how she wanted to go for the child but her husband did not want it. So, she had asked for people’s advice. Going through those advices was plainly pathetic. Save a few people, who had represented both the positive as well as negative side, most of them had spoken about ‘burden on the family’ to ‘embarrassment to the siblings’ to every horrible thing they could come up with. Some even said, how they have got rid of one or more of such pregnancies and later had a a ‘normal child’ and were now happy. A lot of people showed a total ignorance and respect to kids/people with down syndrome and other disabilities.

I don’t believe in abortions and I personally believe there can be no excuse for killing a life. At the same time, if someone thinks they aren’t strong enough to go through parenting a kid with special needs, I wouldn’t comment on them. However, it so bothers me that despite not being able to appreciating diversity, some of these people just stoop so low and pass derogatory remarks or demean people with disabilities. Its such a sickening attitude. And, the words that they had used to describe the disabled kids were so hurtful and completely unbearable.

Anyway, the lady had posted her question on September,2009. I was curious and was hoping that she went ahead with the pregnancy. I wanted to write to her and share my story. And, share other stories of so many wonderful kids that I have met online through their parent’s blog. I wanted to tell her that this particular journey is definitely harder but it is rewarding too. That we loved our son dearly. And, my son having Down Syndrome has in no way taken out the happiness in our lives. After his birth, we are even more happier and are able to appreciate every step in our journey. Of course, its for the lady to decide her journey but she has to at least know that opting for the child is a worthy choice .

Anyway, to know what she finally decided, I was going through every page and found more and more insulting remarks. So, finally I found her response and she had decided to do away with her pregnancy.

Before reading these topics, I was planning to write to the moderator and request her to create a sub-forum for kids with special needs where we can discuss about therapy and other things. But, after reading this, I totally gave up. I’m afraid of insensitive remarks. Of course, I would fight them. I could even have the moderate delete the offensive post. But, the scar that it would leave in my heart is something that cannot be done away with. To them, it is just a random remark. To me, its about my son.

From baby to a big boy!

2010-02-10T22:57:00.000+05:30

I’m so excited because I saw my son crawl today. Usually, he would just scoot or crawl in the reverse direction. Today, he actually crawled.

These days, I see a lot of changes in Vignesh. He is getting choosy about so many things – from his food, to his toys to music. Believe me, he is getting very choosy about the music (read as ‘rhyme’) that he listens to. He enjoys rhymes CD by Company A. After seeing his interest, I got him different rhymes CD by two different companies. He would not listen to them. Finally, I got the second series by the same company A and he listens to them.

I’m having so much fun ‘treasure hunting’. Yes, I have found 2 other teeth in my son’s mouth in the past few days and the treasure hunt still continues.

I’m so happy that my son is becoming a big boy!

Nap time

2010-02-08T12:18:00.003+05:30

My son was having his Saturday afternoon nap. He had disturbed sleep. Since I was busy in the kitchen, I sent my husband to make him sleep again. After some time, this is what I saw:

Look, who has hit the beach!!!

2010-02-07T08:47:00.013+05:30

It was a wonderful Sunday morning. And, we took out Vignesh to the beach for the first time today. And, since Vignesh was tolerating PMV well, we din't have to be bothered much about suctioning. The three of us were able to hang out together as a family, finally. Oh, we just realized how we had missed family outings (except the medical appointments) all these months. Just have a feeling that life is slowly limping back to normalcy.

All in a day's work

2010-02-03T21:38:00.007+05:30

There was a time when any misplaced thing in the house would irk me and I would totally freak out when the house was untidy. That was past. Now, just look at the mess that my son has done! It does not freak me out. It just makes me proud!

And, he moved (with a combination of scooting and back crawling) on his own to the TV cabinet, pulled things out and threw them all around him. I thought I had to wait for this until my son learnt to walk. And, I was so excited to see this for the first time:

No wonder he gets so tired after a busy day

Vignesh at play

2010-01-28T21:55:00.003+05:30

Vignesh loves to play games but he does not prefer toys so much except for the ones that makes noise like my cell phone (if it can be counted as a toy) and rattles. When I discussed it with his therapists, they said he hasn't still begun to understand the concept of playing with toys. I did not think so because he understands games very well and even comes up with his own little games at times. To me, he simply did not prefer toys.

When I got this leap frog 'spin and sing' on Monday, I had my own doubts. Was I wasting money on something that he wouldn't be using and should I be getting him therapy related items instead (as suggested by my husband?) But, I did not want down syndrome or his therapy to dominate every walk of our life. So, I went with the option of getting him toys.

When I got back home, I just showed him a couple of times on how to play with it and he immediately caught up. And, like most other toys, he plays with it just for a few minutes and throws it away. So, he does in fact understand the concept of toys but does not prefer playing with them on his own. Here is a video of him at play.

Cause for my concern

2010-01-27T22:31:00.003+05:30

(Continued from previous post)

At first, my husband and I were just thinking about the result of the bronchoscopy. Only later we realized that we weren't been informed of the actual procedure that took place. The doctor had said that his airway had healed but he did not tell us why they did not try decannulation.

When we first went to meet him in the outpatient ward he wasn't available. So, we finished the discharge procedures and went to the OP ward to meet him. There were a lot of patients and it was a really long wait. Vignesh has grown up a lot and it is really difficult to manage him when we are out. The more active and playful he is, the more suctioning he needs. At first, it was difficult to find a private place for suctioning and we were forced to do it in corridor. And, finally we met the doctor.

With so many patients waiting outside, we had time to speak to him for just a couple of minutes and this is what we learnt. They had inserted the broncoscope a little below the vocal chords. Things looked fine. They did not want to go further as it might irritate and cause swelling again. So, they just removed the tracheostomy tube but he was desaturating and so they put the tube back in. The entire procedure was carried out in about 15 minutes or lesser.

This just leaves us with a lot of questions. My son has been on trach for nearly a year now. So, removing the tube and expecting him to breathe on his own all of us sudden, looks unreasonable to me. From what I read on the tracheostomy forum, I understand that decan isn't handled as abruptly as this one. The doctors follow a series of steps before going for trial decannulation. First they try to downsize the tracheostomy tube and then they cap it for a few hours. Only later do they try removing the tube. And, this seems like the systematic and the best way to do it.

We are just worried that if we are to repeat my son's trial decannulation after 6 months, the same abrupt procedure might be followed. And, this might just keep continuing in a loop. I just feel like we are struck and I'm trying to find way to get out of this situation. We were told that there were just a couple of doctors who deal with pediatric tracheostomy in India. And, this was the only doctor to whom we were referred to. We don't know about any other doctor who deals with tracheostomy.

So, this is what I'm planning to do. It might sound too superficial. But, we are really running out out of options and the necessity is just forcing me to come up with all these crazy ideas. I'm just hoping this would work. So, this is the plan. I'm going to discuss with people in the trach forum to find what are the various procedures that are been followed in trial decan. I'm not sure how the system works abroad. But, I would anyway ask my aunt if she could get in touch with a ENT in this field and who could give us idea about trial decan.(She had helped me in getting assistance from a pediatric cardiologist to read my son's echo when they first did an incomplete diagnosis for my son here).

And with all these papers, I 'm planning to set up an appointment with the head of the PICU at the hospital in Chennai where we usually take Vignesh to. Her team is fully aware of Vignesh's medical history and her team takes special care when it comes to my son. We would discuss if the her team and the ENT at the hospital could try decan in the right way. As a matter of fact, this is the team that handled Vignesh's tracheostomy surgery last year. And, the ENT here has expertise with tracheostomy and short term decannulations. And, he also has complete knowledge of Vignesh's medical history.

I know all this sound too far fetched. There are hospital rules, doctor's egos and a whole other factors that are involved in getting this done. But, I'm just keeping my hopes up. We need loads of luck and prayers. Please keep us in your prayers.

Tracheostomy Update

2010-01-27T21:55:00.003+05:30

Vignesh's bronchoscopy was done last Monday. I'm a little upset that he wasn't decannulated but I'm more worried about the manner in which his bronchoscopy was handled. Confusion prevailed all along. To start with, we were given appointment at 10.30 am and Vignesh was on fasting for 4 hours. But, when we reached the ENT's reception, we were informed that he was busy in the OP all morning and hence the procedure would be taken up only in the afternoon. So, I immediately fed my son. As soon as he finished his drink, the doctor came and asked us if we are ready for the procedure. Not sure where the miscommunication happened. Anyway, since we had fed him, we had to wait till noon in the PICU. We were also a little worried to know that the pulmonologist who usually handles bronc for my son had moved abroad.

Vignesh was happy and playing with nurses in the PICU. Then, there was this routine pricking for an IV line. And surprisingly by noon he went into deep sleep even without the sedation. So, by 3 pm the procedure started. They wanted to observe the movement of the vocal chords to make sure it was functioning fine. And, this can be observed only when he isn't completely sedated. So, they began the bronc without sedation and we could hearing his crying standing outside.

In about 15 minutes, the procedure was over. The doctor informed us that his airway has improved drastically. There was no redness in the region and even the swelling was gone. However, we have to wait for another 6 months before giving a try. He left saying that he would be in the hospital until 8 at night and we could contact him if we had any questions.

There was a little disappointment but we were happy that his airway is healing on its own. Vignesh was deeply sedated and they told us that once he wakes up, we can take him home if he tolerates the feed. So, we had him discharged by evening. And we got back to Chennai by Wednesday last week.

Tracheostomy Assessment

2010-01-17T20:44:00.003+05:30

We are in Bangalore now. Came here today morning. Tomorrow, we are meeting the ENT for Vignesh's tracheostomy assessment. Its a different city and a different hospital. So, there is always an increased tension. On the bright side, from both the previous assessments we had at the hospital here, we know that the doctors are experienced and know what they are doing.

The appointment is at 10.30 am tomorrow.So, they would be starting the procedure at 11 a.m. I'm scared not so much about the result of the assessment. Because, if not now, we would again try in 6 months time to decannulate. I'm more afraid of the mental trauma that my son would need to undergo. He has grown up so much since the last time we came here (that was in June last year). And, since his hospitalization in December, he gets agitated when we try to restrain him. Probably because, restraining him reminds of the numerous painful pricks he had at the hospital. I hoping that it would be less painful and traumatic to Vignesh tomorrow.

And, the most difficult part for us is to wait outside when the procedure is in progress. There have been too many bronchoscopies and too many disappointments before. Until the doctor comes out and says the result, we would be extremely tensed. Anyway, I'd make it clear to the doctor even before they start the procedure to go in for decannulation ONLY IF the swelling in the airway is completely cured.

Please pray for Vignesh. We really need it.

Would provide an update about the result of the procedure as soon as I can.

Vignesh Photos

2010-01-14T22:58:00.009+05:30

Vignesh has inherited this 'look' from me!

My son can crawl really fast but in the reverse direction! That still counts as crawling, right?

Yeah, thats meant for bathing. But, I got it so that I can put his toys in that and easily move him around the house.

I made him sit there to play with his toys while I was busy with cooking. Within minutes I turn back to see him in this pose.

And, here is my favorite smile!

Hosptial checkup

2010-01-13T07:36:00.002+05:30

We had gone for a check up yesterday. Vignesh has started to sweat in the head again. Head sweating is associated with heart problem. He had head sweating from birth until few weeks after surgery. And, when the problem started again about 2 months back, I was really worried. We took an echo and thankfully there is no problem with the heart.

When I googled about it, I saw that rickets could also cause head sweating in children. Rickets is caused by vitamin D deficiancy. Our place has at least 9 months of summer and if Vignesh couldn't get sufficient Vitamin D that is available in the sunlight, I would be surprised. Anyway, would wait for the result to see what it is.

We gave him chicken pox vaccine and polio drops yesterday. It was funny that he did not cry for the injection but ended up crying so much when we restrained his legs and hands for the x ray. I guess he was reminded of the IV line pricks.

The schools and offices would be shut for 2 or 3 days for the pongal festival. But, my hardworking son has just a one day holiday tomorrow. I still have some last minute shopping to do. The only time I get to do shopping is during his OT sessions. Vignesh refuses to do OT when we are there. So, that is all the time that I get to shop for whatever I need.

Last year this day he was in hospital. As a matter of fact, this was the day he became really critical. The memories of him slipping into seizure due to dipping oxygen levels is still painful to think. Later on this day last year, he was moved to a different hospital and put on ventilator. And, this day last year was the last time I heard his voice properly. After that, it was just ventilator leading to tracheostomy.

I'm thankful that my son is healthy and happy now. This is the first time he would be celebrating pongal. Would post picutures of Vignesh celebrating pongal tomorrow.

Pongal - The harvest festival begins!

2010-01-13T06:41:00.003+05:30

The 4 day harvest festival begins in my state. It is one of the grandest festivals here. The tradition began centuries ago when agriculture was the only major occupation of the entire state. The best thing is that, although today cities have nothing to do with agriculture, the tradition is still very alive.

Today is bogi and it is the day that we thank the rain god for helping in the harvest.

Tomorrow is the main festival pongal where we thank the Sun god. It also marks the beginning of the 'spring season'. The tradition is to cook 'pongal' (rice with pulses) in mud pot outside the house at the time of the sun rise.

The next day would be 'mattu pongal' is dedicated to the cows and bulls for helping in ploughing the field, etc. The thing I hate about this day is that in the southern districts of our state, they have these bull fights. These bulls are hurt badly and most of the times some human lives are also lost. The animal welfare organisations have been trying to get a ban from the court. Since it is an old tradition and involves human sentiments, the court is refusing to ban this. However, bull fights are now regularised. They have to get prior court permission and the entire event has to be monitored by the animal welfare members to make sure that animal isn't totured in any way.

The fourth day is kannum pongal. There are two types of celebrations. For a section of people, it is more of a picnic day. For others, it is the day when women offer prayers to God for the wellbeing of her brothers. My tradition falls in the second catergory.

The festival is celebrated under different names and for different reasons in other states of India.

A tiny, white sprout!

2010-01-11T21:29:00.005+05:30

I see a tiny white sharp sprout. It is one of the most beautiful things that I have seen! I have been waiting for this for months! YAY, my boy is teething! A tiny teeth is erupting in the center of the bottom row. It is still too small and hence can't always be seen when he smiles. And, when it does, I'll wait with my camera to capture that smile. And, more importantly, he has already started to put the teeth to use and his mom's nose had the honour of being the first thing to be bitten. My lucky nose!

Getting back to therapy!

2010-01-03T23:31:00.003+05:30

After a long break, Vignesh is getting back to therapy from tomorrow. He has been missing his classes since the last week of November. I'm happy getting back to the routine. But, I'm not so sure if Vignesh would be excited about it too. Got to see his reaction in the class tomorrow. In the meantime, just wish my little boy luck. Because, his mom is so demanding. Instead of setting goals for herself, his unresonable mother has prepared a mental checklist of things that she wants Vignesh to achieve by the year end.

Meet you all tomorrow with the updates!

Happy New Year!

2010-01-01T00:49:00.003+05:30

The other side of down syndrome

2009-12-30T22:07:00.004+05:30

The geneticist who handed over my son's trisomy report was a horrible person. I'm not saying this just because of the list of things he was so sure my son would never be able to perform. ( I'm so surprised how education makes some people assume the role of God that they think they can go about predicting the future of people whom they consider 'lesser beings') He went a step beyond that and wanted us to take up the issue with my gynecologist for not educating us about the down syndrome test during my pregnancy so that we could have done the 'needful' to avoid the birth ( Ok, with a great effort I'm now controlling myself from using abusive language against him)!

This post isn't about what happened that day. I'd probably write about that story some other day. This is about the other side of down syndrome which he failed to tell us on that day. This is something that we are learning in our everyday journey with our son. Ok, let me tell this with a story that happened recently.

As you all know, Vignesh was in the PICU a few days back. Sometimes, my husband or I would leave him with the nurse for a few minutes to catch a meal or change shifts between us. And, most of the times when we are back, there would be a big group of nurses on Vignesh's bedside. Actually, the first time my husband saw this, he panicked. He thought something was wrong and ran to see that they had all come to play with my son.

There is about 5 or 6 beds in the PICU arranged in a straight row. So, the doctors just keeping moving up and down the room. And, almost everytime the senior consultant doctor passed my son's bed, she would stop, smile at him, and baby talk. I'm not sure if I gave her some odd look or she just felt like explaining it, she told me that she is not able to pass my son without talking to him or smiling at him.

There is a whole lot of people from infection control department to technicians who would come and play with him. At a certain point, it bothered me. He was having so many visitors that I began to worry about infections.

And, one day I was just walking outside to grab a cup of coffee. A lady from housekeeping came to me and asked if I was Vignesh's mother and how he was doing. I go to pharmacy and people ask me about my son. And, a person from guest relations department came and told me that my son was very famous there.

And, when he was leaving the hospital, all the nurses in the HDU in the shift were there to wave him bye.

A few doctors like his ENT visited him and specially mentioned to the nurse not to charge for the visit since it was more of a casual visit to see him and not for any specific medical reasons.

My son was in the hospital for about 15 days and his pediatrician would visit Vignesh at least twice everyday. He refused to charge us even for a single visit.

All these might seem like a brag and exaggeration. Its a brag, yes! But, definitely not a exaggeration. So, wondering whats the whole point? Its a huge and probably the biggest hospital in my city. These nurses, doctors, technicians or the cleaning staff see so many patients everyday. I don't know for what reason, for a lot of these people Vignesh wasn't just another boy. He was special and he was treated with special love and care. Few of them knew about his down syndrome and a few didn't. But, it did not matter. They loved him for what he was, the way he was.

Whether they knew it or not, I guess it is the extra chromosome that was at work. I have seen it so many times on so many blogs. How the designer chromosome could cause an infectious smile that could easily brighten a person and win over hearts! How some gynecologist or geneticist advocating against down syndrome turn a blind eye towards the this beautiful side is just beyond me!

My knee pain problem

2009-12-29T20:00:00.003+05:30

I'm worried. I've developed knee pain in the past week. My right knee is getting worse and I'm literally limping since today evening. I have always feared this. In less than 3 years, I have gained a lot of weight and I knew if I didn't work out this day would eventually come. I have seen my mother go through all this. She had knee replacement a couple of years back but still has pain and restricted mobility. So, I had always feared and wanted to avoid this.

I'm just hoping this isn't anything serious. I'm calling up the yoga center and fixing an appointment tomorrow. I'm so reluctant to see an ortho because it would eventually lead to my weight issues. It would bring in a sense of guilt and shame. I have honestly tried a lot of things from diet to aerobics to walks. But, I'm either too busy or too tired to continue working out so I give up. But, now there are no excuses. I can't afford to be unhealthy especially now. I guess I would take the opinion of the doctor at the yoga center and proceed as per his guidance. I'm just hoping that with some luck it turns out to be some simple winter time knee pain.

Vignesh Photos

2009-12-27T21:52:00.009+05:30

Vignesh at hospital PICU - Taken during the first week of this month

Back home and on oxygen support

Back in form

Exploring his new bike

And, this is what happens when you sing to Vignesh his favourite rhymes:

Smile,
And, more

and, more

And, more

Just makes me wonder, if he is happy to hear the rhyme or is it my voice that he is laughing at?

With his great grandpa

Back home!

2009-12-15T20:42:00.004+05:30

Vignesh got back home from hospital yesterday. He still needs a little oxygen support. I'm just worried about his diarrhea since yesterday. The frequency has increased despite the careful diet. Anyway, keeping him hydrated with a lot of fluids. He has also lost a lot of weight. Will post a picture of him tomorrow.

Anyways, when we got him home yesterday he was all dull and sleepy. Then I played him his favorite rhyme on tv and he was happy and even started to dance. He is happy to be home. Just waiting for him to get over these minor health issues. Due to tracheostomy, we had restricted his movement outside home. And, due to this oxygen support, we are now having to think twice before we could move him around even inside the house. Thats all for now. Thanks again for all your prayers and thoughts.

Quick Update

2009-12-08T08:18:00.002+05:30

Vignesh is recovering and is active most of the day. Expect for the desaturation issue, he is otherwise doing great. He is still in PICU though and they are gradually reducing the CPAP dependency. I'm just worried about too much of antibiotics that he is receiving. He is receiving three different antibiotics a day now. But the doctors say that we can't do without it. Anyways, can't wait to get out of the hospital. Thanks for keeping him in your thoughts and prayers.

Latest Health Update

2009-12-05T07:13:00.003+05:30

Yesterday morning Vignesh had temperature spikes with the 2nd antibiotic too. And, suddenly after breakfast, he began to desaturate. They kept increasing the oxygen level to 13-15 litres. But, his stats still fluctuated between 87-93%. And, his breathing was also rapid. So, they shifted him to PICU. And, for the third time they have changed his antibiotic. They say that with so many hospitalizations and medications, his body has become immune to level 1 and level 2 antibiotics and they had to step up to a stronger one. Vignesh is right now on C-PAP.

So, yesterday his blood culture report came. And, Lisa you were perfectly right. It is pseudomonas. The report also carried a list of drugs the bacteria is sensitive too. The second antibiotic which they had given yesterday was in the list. So, this should have helped him fight the bacteria but strangely it din't. So, they want to continue with the 3rd antibiotic that they have started him on since it is a stronger dose.

My husband is staying with my son since yesterday night. I spoke to him over the phone and Vignesh seems to be better now. No cough. Temperature is just around 99 F and he is fairly active and even watched TV today morning. His Oxygen support on CPAP has also been reduced to 35%. (They had started with 70% support yesterday noon).

Its so frustrating. The hospitalizations just deprives us of the quality time that we could spend with Vignesh at home. And, it also affect his therapy causing so much delay. And, every time they prick him, they are finding it hard to get a vein. So, they end up pricking him in so many places on his body. Its frustrating that I can't help. I feel physically and emotionally exhausted. But, at least a good nights sleep makes me active again. It is this emotional exhaustion that I find so difficult to cope up with. I think once he is fit and the doctors say we can take him back home, I would feel happy and alright. My husband and I are just waiting for that. Thanks for all your prayers.

Health Update

2009-12-03T18:29:00.003+05:30

I had written the following update day-before night but couldn't post it. So, posting it now for continuity:

Vignesh's reports have started coming in. Blood culture report shows gram negative bacterial growth. However, we would get the complete report only tomorrow. In the meantime, the new antibiotic and cough medicines seem to be effective. In the past two days, Vignesh has had temperature spikes just twice last night. Coughing has also reduced considerably. But, his breathing is still fast and his statuaration dips to as low as 73 - 71 without Oxygen support. Also, he is sleeping most of the day and stays awake and active for just about 3-4 hours a day. Still not clear when he would be completely cured.

In the meantime, I thought I could post this video that I taped last week. Can't believe how things have changed in a week. I miss seeing him smile and play, keeping me busy all day. Just waiting for him to recover and get back home soon.

Vignesh hospitalised

2009-12-01T17:44:00.004+05:30

Vignesh is hospitalised since Saturday. He is on oxygen support and is suffering from fever, severe cough and diarrhea. None of the medicines given so far has helped to cure his fever. They just reduce the temperature temporarily. The most worrying things to me are his cough and oxygen desaturation. He wakes up all happy and ready to play. But, then coughing begins and it is so severe and continuous that he turns red, gets tired and goes back to sleep. And, other than liquid diet, all other types of food just starts off his cough (he was unable to eat even his favourite chocolate doughnuts today). His apetite too has reduced drastically. It just pains to see him like this.

They have changed his antibiotic for the third time. Today, they have actually started Vignesh on a more effective one. So, got to wait for a day or two to see if this helps. But, even now his temperature is over 101 F. They have also changed his cough syrup to a more strong dose.

The good news is that his H1N1 test has come out negative. Blood culture report for virus infection is expected in a day or two.

Even as I'm with Vignesh at the hospital, I just wander between the two extremes. At one time, I feel peaceful. There is so much of hope that we are getting back home pretty soon. At other times, I'm unable to control my frustration. For instance, on Saturday the doctors had tried to find an IV line. In the process, they ended up pricking so many places on his hands and legs. Just hearing to his muffled cry was so unbearable. I run away from the place. I ended up crying in front of everyone. But, I could not do anything to make his pain go away. In fact, he looks up at us when he senses trouble and I feel so helpless being not able to do anything. Now, he is so suspicious of everyone in the hospital that he panics and cries when anyone else other than my husband or I go near him. And, it so pains to see that he has stopped trusting us for help when doctors or nurses go near him. It makes me feel miserable.

Today, even as I set the internet on my laptop, an idea struck. I began to play rhymes to Vignesh from 'You Tube' and also his fav 'ABC Zoo' game. He was happy and got all excited. In fact, he even began to bang on the laptop with both the hands (incl the one with the IV line). But, pretty soon he coughed a bit, became tired and fell asleep. I have asked his dad to fetch Vignesh's favourite rhymes CD tomorrow. I guess this would cheer him up so much.

I just want to him to be completely cured and get back home strong and happy as soon as possible. I believe that prayers could really perform miracles. Please pray for my son's speedy recovery.

Yes, we got it!

2009-11-27T23:09:00.002+05:30

The search is over! A company has sold us health insurance. Vignesh now has his health insurance just like anyone else his age. And, just like anyone else we just had to give his medical reports for getting the insurance. We were so unhappy about the discrimination in the insurance system. Now,we are extremely happy and at peace. While we're excited, we hope that he stays healthy and we never get to use it.

I'm so thankful to the person who helped us through the procedure and the insurance company for treating my son without any discrimination!

Project Darya - A Grand Sucess

2009-11-26T16:16:00.004+05:30

Its a happy thanksgiving story. Darya has been gifted with a loving home for thanksgiving. Hats off to Lydia who has raised over $265oo in just 8 days and the money is still pouring in. Lydia has achieved the impossible. I have learnt a couple of things from Lydia.

That a good-crazy-love can succeed over grownup-experience & logic. I have followed my heart when I was young and as I grew up, I suddenly stopped believing in miracles. So, next time I feel strongly about something, I will follow my heart rather than pondering if it is impossible.

Next time I read or hear a cruel remark about disability, I would understand that these people are just a minority and that there are a majority of people who value and respect people with disabilities. Because, if not for the financial help and the prayers of a lot of people it would not have been possible for Lydia to achieve this tremendous feat.

And, above all thanks Lydia for reminding me the value of faith and hope.

P.S: If you haven't been following Lydia's story yet, you can do so by clicking here.

Project Darya

2009-11-25T23:54:00.004+05:30

Yesterday, I read about this amazing -year old girl Lydia and her Darya project. She is on a mission which might seem impossible to so many. Her mission - to rise $20,000 by Thanksgiving. So, why is she doing this? Because, she fell in love with this cute little girl Darya from 'Reece's rainbow'. She wants to bring brighten up Darya's life by bringing her home. She started this project hardly ten days ago and she has already collected $13,000! Love, faith and goodwill of a lot of people have helped her reach so far. With hardly a day to go, her family is still hopeful for a thanksgiving day miracle. To know more about 'Project Darya' and be a part of it, just visit their blog by clicking here.

OT Assessment and Report

2009-11-17T19:51:00.003+05:30

I had taken Vignesh for OT assessment last month. The assessment was an eye-opener to me. On his first try, he pulled a thread attached to a toy in order to reach for it. He had never played with a similar toy before and I was pleasently surprised to see that he was able to work out the logic on his own. I was also impressed with him handling the toys. For example, if it was a rattle, he began to bang it on the floor and if the toy did not make a noise he was trying to pull it or bite it :-)

On the other hand, the therapists were also able to point out a few issues. One of their major concerns was that he wasn't moving yet. Since there was no form of motion, he had to entirely depend on us for anything that he wanted. While, I'm so waiting for him to crawl and walk, I have never been thinking about the dependency angle so much before. It began to worry me.

In the past few weeks, Vignesh would scoot but only for a very little distance. In the past few days, he has really picked up speed. Suddenly today I noticed that he is moving really fast. I would leave him with his toys and go to the other room and within 5 minutes or so he would have moved significantly. He is also trying to push himself up using his arms but he loses balance quickly. I'm not sure if this is the first step towards kneeling or crawling or standing. Whatever it is, I would be so excited when it happens.

We also learnt that until about 6 months, a baby might just try to bang or throw toys around. This is called as destructive play. As the baby grows the games will get more meaningful. Its a little worrying that a lot of times Vignesh is more into destructive play. But, he is gradually learning I guess. These days he is trying to stack toys together instead of just banging them.

So, after a lot of delay, I received the hard copy of his OT report today. And, with some progress taking place, I'm not worried as I was last month. I'm in fact excited. My son might be scooting, crawling or walking later than non-ds kids. It is worrying but only until he achieves the milestones. Once he is there, the happiness and the excitement is so immense that it makes the wait all the more worthy!

Health Insurance woes

2009-11-13T21:38:00.004+05:30

Since my son was born, I have been trying to get an health insurance policy for my son. I have still not been able to. I have spoken to so many of them. Some have refused because of down syndrome, some due to his heart surgery and I guess there was a company that refused because he had tracheostomy. Some of the insurance companies have it clearly listed 'genetic condition' under permanent exclusion. Isn't this the worst form of discrimination? Isn't it unethical that they would not sell the policy to someone because there are chances that he might need it the most? This whole system is frustrating and tiring!

Of course, there is a government scheme offering insurance to people with disabilities. The monetary cover provided by the policy isn't too much but then something is better than having nothing at all. So, I decided to apply for it. When I approached people for an application form, they informed me about the process. They wanted me to get a national id card where a doctor would examine my son and certify that he is mentally retarded and provide the percentage of retardation. Only after getting the card would I be able to avail government insurance. But, I have his karotype report stating that he has down syndrome. Shouldn't that be enough? Looks like it isn't. Only a national id card stating my son is mentally retarded would be accepted as a proof to provide him health insurance benefits.

What I don't understand is that why should this be required to get a simple health insurance policy? This policy isn't going to cover his therapy charges or anything special that a normal health insurance wouldn't cover. This is just like any other health insurance policy. They do not cover anything special. When I can get a health insurance policy without having to prove my mental capabilities, why should my son prove otherwise in order to get his? Also, how is a doctor going to examine a 15 month old, evaluate his mental condition and come up with the percentage of retardation? It all sounded so unfair and I immediately dropped the idea of availing the government health insurance for my son.

Ok, going back to the private insurance companies, the telemarketing calls that I receive are so pathetic. There is usually some insurance agent desperately trying to sell me a policy. I tell him about my son and he immediately asks me what is down syndrome. (this has happened in almost all the telemarketing calls). I tell him its a genetical condition and they don't usually understand. So, I try to explain in layman terms and by the end I hear the agent saying 'Ma'm we wouldn't provide cover for this disease but all other diseases would be covered. And, after four years or so, you can also get a cover for this disease'. Do they even listen when you take time and explain to them what things really are! So, I just ask them to note down the word 'down syndrome' consult their superiors and get back if they still think they could sell us their policy. Almost most of the times, I never get a call back. I'm not sure if its because they can't sell it to us or the agent found it unworthy of his time to find things. Just once a person called back and apologised because the company doesn't sell policy to people with genetical problems. I was angry but at least I was happy that I don't have to approach them again.

When my son was admitted in January this year, he was on prolonged hospitilazation. Within hardly a fortnight all our money was almost spent. We had no idea what we were going to do. That is when my aunt, people from the Down syndrome federation of India and my husband's collegues came to our rescue. We never asked anyone for help. The help just came and we were able to manage the situation. But the bigger question is what about other kids with down syndrome? What if no one comes to help them out? Why should they suffer to get medical assistance just because they are born with down syndrome or other similar condition? And, why should things be made more complicated for parents like us when we have a lot of other medical complications to worry about?

I wouldn't blame the government for not providing enough medical funds. India is still a growing economy and with a huge population, it is difficult for government to help beyond a certain point. On the other hand, they should be able to put a stop to the discriminatory policies adopted by the private insurance companies. Health care should be available to all and denying it to people who need it the most makes no sense at all.

I'm just hoping for a positive change would come over soon. In the meantime, my search still continues. Tomorrow, I'm planning to fill out a form and apply for my son's health insurance with another private insurance company. Will have to wait and see what happens. Until then, just wish us luck!

Inspirational Videos

2009-11-13T16:34:00.003+05:30

Recently, I wrote about introducing ABC flash cards to my 15 month old son. My good friend Lianna has been kind enough to share the story of how she had successfully taught her son Gabriel ABCs when he was really young. She had also shared the pictures and videos of Gabriel rightly identifying his alphabets when he was as young as 22 months. Honestly, when I was that young, I did not even know there existed a language called 'English'! lol!

Well, getting back to the subject, it was a great inspiration to see cute, little Gabriel working with alphabets and it surely gives me a great confidence in my journey with Vignesh. I found it inspirational and too cute. Hence wanted to share the links with everyone.

Here is a post of really young Gabriel identifying the alphabets.
http://mylifewithgabriel.blogspot.com/2009/11/alphabooks-for-sumithra-vignesh.html

And, here is a post of him actually naming them when he was just 29 months old
http://mylifewithgabriel.blogspot.com/2009/11/gabe-naming-alphabet-letters.html

Thanks Lianna for sharing your story and the videos! I'm sure it would serve as a motivation to other parents who are out to begin their journey like me!

My new choco french beard

2009-11-12T10:42:00.003+05:30

Flash Cards - Part II

2009-11-10T22:11:00.004+05:30

To read the first part, click here.

Last year, I had attended a workshop by Down Syndrome Education International (www.downsed.org) and their model flash card struck a chord with me. So, I wanted the cards to be thick and covered with a sheet just like the ones I saw. I cut out thermocol sheets, pasted the pictures of the alphabets and covered it with glass paper.

Here is a photo of some of a flash cards that I made:

Apart from showing Vignesh the cards while spelling them out to him, I also get to give it to him to explore them. I put it in between his toys so he gets to play with them. The more he sees the cards, the more familiar the alphabets would become. Vignesh, usually tends to tear or crumple papers. Now, this is so thick and also covered with a sheet that he isn't able to damage it.

So, it was really worth having all the tiny thermocol and bits of glass papers flying everywhere . My husband even asked me why I can't go ahead to use one of the ready made flash cards that I had purchased. But, I tend to dislike things that are off-the-shelf. Plus, I had fun preparing them. I just felt like a first grade student again.

Everyday, I continue to show him the ABC zoo game on the fisher-price site. I show him the cards either before or after he sees the ABCs on the site, so that he would be able to understand what I'm doing. I try to imitate the alphabets and the words in the exact manner as it appears on the site . Apart from that, I try to bring the cards up whenever we play games.

Its has hardly been a week since I started introducing these cards to him. Will continue to show him the flash cards everyday. The day it starts to show results, I would definitely be sharing the story with you on the blog.

Here are the links to the peek-a-boo and ABC zoo games the fisher-price site:
Peek-a-boo - http://www.fisher-price.com/us/playtime/games/infantGames_B_BS.asp
ABC Zoo game - http://www.fisher-price.com/us/fun/games/abczoo/default.asp (choose the option 'infant' to go through the sequence automatically).

My evening stroll

2009-11-09T19:18:00.019+05:30

My appa (father) takes me to walk in the mornings and and evenings. Just wanted to share pictures of my evening walk today.

Getting ready for the stroll

Posing for the camera

Oh, wondering why I'm crying

Appa made me sit on a narrow passage!

Still angry with my appa

This is my favourite game

Heres the secret behind my 6 pack abs!

Waiting to grow big and get into the pool

Something is bothering me

Oh, I already miss my amma. Want to get back home!

Back from walk

Now, here a photo of me standing on own, leaning against a wall.

I was kissed!

2009-11-09T18:33:00.003+05:30

I'm so excited. Something incredible happened today morning. Vignesh kissed me. A lot of times too. As of now, his version of kiss is a little different . Its grasping my cheek with his wide open mouth. He has done it before too. But, I wasn't sure if he just trying to bite or kiss. But, today, we were standing in front of the mirror and I kissed him. Immediately, he held my hair (just like I how I hold his head or face) and started to kiss me all over my face with a big smile. It felt great! (Of course, it hurt a bit since he was pulling my hair. But, who cares!)

Vignesh, you make me so happy everyday and I love you.

Flash Card - Taking Cues from my son

2009-11-08T20:23:00.004+05:30

A quick history. I decided to introduce flash cards early. When I found my son had down syndrome, it only made me more intent. I searched online and read about Glenn Doman's books. It took more than a month to get the books as they had to get it from the US. I was excited when I read the books. But, I was too busy with the hospital visits that I never found time to prepare the flash cards. Thankfully, I found a place close to my house where they offered program similar to Glenn Domans. I attended a one day program and material were almost in accordance with what the Glenn Doman book had said. But, even after I received the material, I have never been able to stick to the guidelines that were given in the book. Either I found no time or I kept forgetting to introduce the material as mentioned in the book. And, I felt very guilty about it.

About a few months back, while I was searching for online games appropriate to Vignesh's age, I was lucky enough to come across the fisher price online games site. ( You will see the connection with the flash card as you keep reading). I introduced him to peek-a-boo and ABC zoo game. He loved them both. I had introduced him to peek-a-boo since it was colorful that he might find it interesting. With time, I found that the game served as a 'Cause-Effect' concept. Every time he touched (or rather banged) the keyboard, there would be color and noise on the screen. He began to understand this and whenever the screen would go quite, he began to bang or scratch the keyboard harder.

Heres are the links to the peek a boo and ABC zoo games:
Peek-a-boo - http://www.fisher-price.com/us/playtime/games/infantGames_B_BS.asp
ABC zoo game - http://www.fisher-price.com/us/fun/games/abczoo/default.asp

This really helped him in the ABC zoo game since this was interactive and the keyboard has to be typed to move from one letter to another. Most of the times, he keeps pressing the keyboard until the entire alphabets and the ABC song is complete. Now, in this ABC zoo game, for every letter, an animal name starting with the alphabet along with the noise made by it is displayed. Both visual and audio parts are good and easily attracts and withholds Vignesh's attention. I would highly recommend it to others too.

Once he reaches 'Z', the next keystroke would get the ABC song that he loves. I sing this song along with the voice in the website. So, once the song begins, Vignesh would turn around, see me singing along, give me a smile and get back to staring the monitor.

And, something wonderful happened about 2 or 3 weeks back. Whenever he reached the letter 'Z', he got excited and turned around. Previously, he used to do this when the ABC song began. So, this meant that he knew what was coming next. That he was identifying the alphabets. (though I'm not sure how many he identifies and what it means to him at this point). I began to notice his behavior everyday to make sure that it was not a coincidence. I'm happy to say that it isn't. I'm so sure that he identifies at least the alphabet 'Z' if not more.

This gave me the idea. Since, he is familiar with the animals on the site, why not prepare the flash cards using the screen shots from this site. That would make it easier for him. Thus began the first step towards preparing and introducing ABC flash cards to Vignesh.

Ok, before I make this post too long and boring, let me take a break here and continue with the story tomorrow. Will post pictures of the flash card tomorrow. Sorry for such a long post. I just wanted to share all the details.

Its my life!

2009-11-06T22:24:00.022+05:30

Lots of happiness

Lots of love

Moments of Fun

And, moments of tears

Toning my muscles

And, flexing my brain

With a little rest

There is never a dull moment!

I lead a complete life just like anyone else. You see my 21st chromosome doesn't really make a difference (except ofcourse, making me a little more cuter)!

Everday Brags

2009-11-05T18:37:00.006+05:30

Finally, its raining and getting cold here. Oh, we have been having a very hot summer since February this year. Once the rains began last week, everyone around seems to be excited.Just checking the status in various networking sites shows how happy the people in chennai are about the weather change. And this weather is making me even more lazy. I just log onto the computer for a few minutes everyday, check my emails, visit my favorite blogs and thats it. I laze around most of the day.

Thanks Lianna, for reminding me that I haven't posted anything for a long time. (BTW, she is hosting 'The Buddy Walk Bootie Give Away' till November 6th as a way to celebrate down syndrome awareness week. To enter the contest and win a pair of cute booties, just visit her blog by clicking here. And when you visit her site, just don't miss out on the videos of Gabriel picking up the winner. The videos are incredibly cute)

Time now to brag about Vignesh. He has grown taller and I'm so happy. He was stuck at 68-69 cms for nearly 6 months since January and as advised by a doctor, I increased his protein intake. He is now 74 cms and I'm just hoping the soy milk would continue to do the magic.

And, he just loves standing. He can stand leaning against the walk for more than ten minutes. When I make him sit, he just reaches out for my hand and using the support stands up on his own. Last two days, he is resting his hands on a pillow and trying to stand on his own. He needs a little more effort n practice on that one though. However, he still refuses to move his feet when we try to make him walk.

Today morning I had left him with his feeding bottle in front of him. He picked it up, placed it correctly in his mouth and even held his bottle horizontally, trying to feed himself. Now, thats was exciting to watch. But, when it comes to solid diet, he would not even try to put it in his mouth. He would bite his toys but if he knows its a biscuit or some other eatable he would drop it down and open his mouth so that we can feed him.

For sometime, I had also been worried about his pincer grasp. He wouldn't try to hold anything tiny. But, his grasp seems to have improved. When I place my tiny earrings in the arm rest of his chair, he immediately picks them up and throws them away (he likes to have his chair neat. He would throw away anything that we place on the table attached to his chair).

Oh, how I love bragging about my dear son. But, got to get back to preparing flash cards. Will be back soon with the flash card story.

Steve Jobs - Inspiring Speech

2009-11-03T21:38:00.007+05:30

I came across this video a few months back. Its a video of Steve Jobs Stanford commencement speech. Its an old video. For those who haven't seen this already, its really worth watching the it. Its very inspiring and provides an optimistic view of life.

One of my favorite quotes 'Every story has a happy ending. If it is not happy, it isn't the end of the story'.

Diwali day photos

2009-10-19T22:04:00.013+05:30

For once, I got up before Vignesh and I had a chance to wake him up.

Still sleepy and confused as the diwali day rituals started
Getting ready after his shower

Posing for the photo
Tired and sleepy soon after breakfast

Getting ready for the evening

And, ironically couldn't take pictures of the celebration properly since Vignesh was missing out the fun and concentrating on the camera when we tried to take his photo. So, just posting a couple of pictures of the evening.

Diwali - the festival of lights!

2009-10-16T19:41:00.007+05:30

Tomorrow is Diwali! I'm so excited. There is an air of celebration all around. The sky is lit with fireworks and there is no escaping the noise of crackers. It has been a really long time since I was so excited about Diwali.

I grew up in a small town where you could see people visiting each other on the festival day, exchanging greetings and sweets. The streets would be filled with children and elders lighting fireworks. I loved those times. But, then I moved to the city for work and later settled down in the same place. It was a place where you carried on with your work and hardly knew your neighbors. You could just see building everywhere and Diwali was just another day. With just buildings everywhere, you could hardly see any fireworks or share the mood of celebration . So, my diwali in the past few years was just confined to see just the specials on television.

Now, I've moved to the outskirts of the city with not many high rise buildings to hide the view. I never realized it would be so exciting here. Its wonderful to see festive fever catch up. I feel excited like a little girl. If I had known that this would be so exciting, I would have started preparation well before. But, it isn't too late. I'm planning to make the best of the day tomorrow. Will post photos of Vignesh's diwali celebration tomorrow.

Vignesh - Enjoying Rhymes

2009-10-11T22:12:00.008+05:30

Was able to take pictures only from behind, since Vignesh gets distracted by camera. He loves electronic equipments especially TV, computer, mobile (he broke my new mobile last week) and cameras.

Watching his favourite rhymes video

Beginning to get excited

Getting into dancing mood

Thumps up to his all time fav 'Yankee doodle'

Distracted by the camera

Last year this day!

2009-10-01T22:19:00.010+05:30

Last year this day Vignesh was two and a half months old. It was the day on which he had his open heart surgery. According to that hospital's policy just one person would be allowed to visit him everyday in the PICU. So, my husband and I usually took turns to visit him. Seeing him with all the tubes was so painful that I usually made my husband visit him and asked him for the update. But, once they started feeding him, I was allowed more often. Yet, getting back after feeding him was very painful.

The hospital kept patients for about a week after surgery. Even after a week, Vignesh was still in the PICU. That was when I shed my shyness and ran behind his cardiologist and surgeon asking (pestering) them to shift him back to the room. I was waiting to shower so much love on him that could make up for all the time that he was spending alone in the PICU. I just wanted to take him in my arms and say everything would be fine. So, after 13 days, his cardiologist and surgeon agreed to have him shifted. My husband had to fight with the hospital authorities to get a room allotted on the same day and by around 8.30 pm or so, we were back with him. It was a silent and emotional reunion for the three of us.

When he was about 15 days old

About a month after his surgery (He was beginning to gain weight)

On New Year day - About a month before Tracheostomy

At hospital after tracheostomy

Recent photo

Thank you, Dr. Bala and Dr. Ranjith! You and your team are making a difference to so many little hearts! We would always remain thankful to you.

Vignesh's new found Love

2009-09-23T21:08:00.007+05:30

Vignesh has found a new love. Right from the time he was a few months old, singing a rhyme would bring smile on his face. So, we got him a rhymes CD a few months back but he didn't seem to show any interest at that time.

About two days back, Vignesh and I were bored. I remembered about the CD and played it on the TV. Ever since then he has just fallen in love with it. Once in a while he turns back and gives me a brief smile and goes back to watching the rhymes again. I'm not sure if its the rhyme or the colorful background or both that has won his liking. And, Its so cute to see him sit by himself (refuses to sit on my lap while watching TV), leaning forward and watching television with so much of interest. Will get a photo of that soon. When I made him stand, he began to wave both his hands up and down. Thats probably his dance move :-)

Another achievement at PT today. He was able to stand holding to the walker for a little over five minutes. Thats definitely an improvement from him previous record of about 2 minutes. We're planning to order a standing frame for Vignesh with the hope that it can work the same magic as his chair.

And, I'm extremely excited! We're expecting the PMV tomorrow or at the most by Friday morning. So, next time when I tickle him, I would probably be able to hear him laugh instead of the noise of secretion that I hear now. Isn't that something to truly rejoice about!

He waved me bye!

2009-09-21T21:15:00.006+05:30

For a few months now, we have been teaching Vignesh to wave 'bye'. He got into the habit of waving goodbye whenever we asked him to. But, of late, he has stopped doing that for some reason that is known to him alone...:-)

He goes out for a walk with his dad both during the mornings and evenings. I hear from my husband that there is one particular security guard to whom Vignesh waves everyday as soon as they meet. There are a few people that Vignesh meets regularly and they all speak to him. But, we don't know why he prefers this particular person alone.

Anyways, this blog is about a different story. Last evening, Vignesh was getting ready to go out for walk with his dad, as usual. I was pre-occupied and forgot to wave him bye. He kept staring at me and when his dad put on his slippers and was ready to leave, Vignesh immediately waved me bye, that too without being prompted. We were both surprised. He again waved to me before getting into the elevator.
I was so happy about the whole thing. It was not because he has understood as to when to wave goodbye. I'm happy mainly because he seems to be aware of his daily schedule. That makes me so happy and even more proud of my little genius.

The magic chair

2009-09-20T23:09:00.007+05:30

Vignesh had started to sit with support somewhere around May this year.

His therapist recommended 'side-sitting' (as seen in the photo above) and told that he would be able to sit without support in a matter of few days or weeks. But, he refused to sit on his sides even for a few minutes. He would sit for short periods of time in 'straight-sitting' posture but his therapist wanted us to avoid it for the starters as it might not help him gain necessary control.

Since, he never did his exercise there was no improvement and it began to bother us. That is when his physiotherapist suggested us this magic chair. He had a person, specialized in making furnitures for therapy purpose, custom design the chair. It was made for Vignesh's measurements. We got this ordinary-looking, magical-chair around the second week of August.

Once we got the chair, we made him sit in the chair almost every minute that he was awake (at least during the first 2 days). Vignesh just loved the chair because for the first time he was able to freely use his hands to play instead of being bothered to use them for support.

And, the miracle happened. When we went for therapy after about 3 days of getting the chair, there was tremendous improvement. Within just a couple of days, he began to sit without support. The result was so quick that at first I even felt it might just be a coincidence.

So, I began to relax and made him sit in the chair only during his feeding sessions. Incidentally, there was no progress and Vignesh was able to sit unsupported for just a few minutes. I understood my mistake and began to make him sit in the chair for longer time. Now, he can sit unsupported for nearly about half-hour, if he wants to. Sometimes, he is too lazy and would just prefer lying down no matter how many times I make him sit.

The chair has helped Vignesh so much. I'm so thankful to his therapist for suggesting this chair.

Rigid Broncoscopy - Good and Bad News

2009-09-19T22:01:00.004+05:30

Yesterday, we had rigid broncoscopy done for Vignesh to assess his airway.

This would help to have a clearer picture than flexible bronchoscopy. But, unlike the flexible one, this is more complicated I guess. This has to be done in Operation Theater under anesthesia.

This was the plan. The doctor would examine the airway passage and if the swelling had subsided, he would decannulate Vignesh else tracheostomy would stay. Since he had already started breathing through his nose, we were hopeful. Although, from our earlier experiences we had learnt never to look forward, I still could not keeping from expecting the good news.

It was more than an hour's wait. We were called in. As an answer to our hopeful glance, the first thing the doctor said was 'I haven't decannulated yet'. When I heard the word 'yet' I knew he had some good news for us.

Here is the good news. He said the passage has certainly widened and the bronchoscope was able to pass quite freely through the passage. However, the procedure was by itself intrusive and could have caused a mild swelling which would subside in a week or two. So, if we want we can go for decannulation after 2 weeks.

But, the bad news is that the passage is not as wide as it is expected to be. It means that if he gets severe chest congestion, the passage might not be able to handle it. As a result, he might have to be intubated or tracheostomy might have to be opened again. There is also a fair chance that it might not happen. So, it was our call.

I immediately thought no way! I'm not going to take this risk which might make Vignesh go through all this again. In which case the doctor feels Vignesh might have to wait for a year or two. So that when he grows, the passage would widen too.

And, another news that bothers me is that during the procedure the doctor could not see the vocal cords moving apart. They were certainly twitching but did not move apart. He wasn't sure if this was due to anesthesia or if the nerves to the vocal cord was affected in someway. I just hope it was due to anesthesia. Also, I can hear a little sound coming from him now and then. So, I really really hope that his vocal cords are fine.

Since, decan is not going to happen anytime soon, I need to start shopping for PMV. I don't have any idea about it. Even the ENT said that he doesn't have any experience with PMV for small kids. We were able to get in touch with a dealer in Delhi, a place that is more than a thousand miles from my city. So, we need to get all the information from him through phone or email. But, we don't know where to start. I'm looking forward to get guidance from my dear friend Lisa as well as the trach forum to gather all necessary details that I need to know before buying a PMV.

So, after the procedure yesterday, Vignesh was all tired and fussy. I think he was scared. He kept crying a lot. He was also sleeping so much that I began to fear if the anesthesia had been given in excess. But the moment we got into the cab and the cab started, he was wide awake and enjoying the bright traffic, cool breeze and the ride back home.

Tracheostomy hurts the most when.....

2009-09-13T20:54:00.002+05:30

My son's tracheostomy hurts me the most,

When I see him scared and crying on hearing other kids at his therapy class cry aloud. How can I make him realize that if not for tracheostomy his cry would sound similar too?

When he looks with interest and astonishment the babbles of smaller kids. Shouldn't he be a participant in the childish conversation rather than being a silent spectator?

When he stares at my lips when I talk to him. And, at times when he tries to imitate me by moving his lips and no sound comes out, I can't just tell how much it pains.

When I attend his speech therapy sessions. How can I try to teach him lip movement and ask him wait till decannulation for him to hear the sound?

When I'm unable to hear the music of his laughter.

Sometimes, when I'm busy in another room and come to find him crying, it makes me feel miserable.

And, it hurt me so much one particular day. I was sitting before him and talking to him. He moved his lips and no sound came. But, I could feel him wanting to talk to me. I could see pain in his eyes. I felt helpless. I hated myself for not being able to do anything about it. His expressions are more likely my imagination. It might sound too far-fetched. But, I can't help wonder what if it wasn't just my imagination. What if he really wants to talk? How can I make him understand that this is just a temporary hurdle? That it is just a matter of time that before he can talk too.

I'm back!

2009-09-10T18:22:00.002+05:30

I'm back after this long silence. I had been too busy in August. Not the regular busy carrying out everyday activities. Rather busy emotionally. Crowded with emotions ranging from anger to guilt to self-realization. And, this has got nothing to do with my son.

These emotions arose from problems that started way back. Five years back to be precise. I had been wronged and cheated. That too for being good and helpful. For four years I had been fighting bitter battle with people for justice. I fought it alone. It was such a traumatic period. I was emotionally broken and the stress began to take a toll on my health too. But, I did not give up fight. I kept fighting till I was paid back whatever I lost. But, they were able to only pay back my monetary loss. No one cared about all the emotional pain that I was put through.

So, last year when I got back whatever I lost, I was happy. I thought I had won my battle and the problems were finally coming to an end. After my son was born, these same people began to come into my life again. All that I expected was a sincere apology for making me go through so much trouble. But, I received none. They just came back as if nothing happened. I was expected to behave the same way.

With so many hospital visits for Vignesh life was getting hectic. Since, these people came over and helped me take care of the home, I began to relax. But, deep in my heart I could not just forget all the bitter years. A lot of times I thought I would make peace with them. But, whenever some difference of opinion arose, all my anger would swell in my heart. But, I had to be nice since it was my house and they were my guest. I was leading a life of double standard and it was killing me from inside.

At times, I would even feel guilty for being angry with them since they were helping me out with Vignesh. But, at the same time a lot of things around me began to change. I began to lose my independence. I began to feel a lot of restrictions on my life. A lot of times I began to feel like a stranger in my own house. That is when the alarm rang inside me. I had already had enough in my life because of these people. I did not want them to ruin my peace of mind again. But, there was nothing that I could do because they were my guests and I had to be nice to them.

So, to make this long story short, last month there was a small argument. That was enough to trigger all my emotions. 5 years of anger and frustration came pouring out. I demanded answers for all the injustices that they had done to me. I was even more angered to find that they did not have any sense of regret or even apprehension for have been so unreasonable towards me. That was the limit.

I finally severed all my ties with them. After the incident last month, I went through a lot of emotions - guilt, anger, fear, peace, etc. I was unable to decide if I had done the right thing. All of a sudden only yesterday the simple truth struck me. Whatever I said during the fight was what they had done to me. If that should offend them, it was not my fault. It was just because they were so ashamed to face the reality. I don't want to be good or bad. I just want to be right. And, in my knowledge I had done whatever I thought was right.

Finally, I have found peace. Five years of burden that I had been carrying has finally been thrown away. Thrown where it belongs. And, its time for me to move on with my life.

Guess who had the last laugh....

2009-08-04T22:13:00.002+05:30

Photoshoot

2009-08-02T21:57:00.001+05:30

For a long time, I had wanted to get portrait photographs done once Vignesh turned one. So, had about an hour of photo shoot for Vignesh last Sunday. I was worried he might end up crying or giving us a tough time. But, he posed for the pictures beautifully. He was so fascinated by the flashing lights that he did not mind sitting on his own for a long time. Of course, his father and I had to sing aloud a funny version of 'yankee doodle' and 'Johny, Johny' to make him smile.

Oh, the really difficult part was selecting the photos. I had to select just 8 out of the 52 photos that they had shot. Here are the photos that I chose.

Hospital Visit

2009-08-01T05:10:00.007+05:30

Vignesh's regular hospital has moved to a new premises. Initially, pediatrics was a department in the hospital and now they have opened a separate hospital for kids. The inauguration was held on Thursday. Last time we went for tracheostomy tube change, they had invited us for the inauguration. Already with so many hospital visits happening we weren't planning to go. But, looks like Vignesh was keen on honoring the invitation.

On Wednesday, he develops cold and slight temperature. And at around 8 pm in the night, we notice that he is desaturating. So, we rush him to the hospital. He gets so tired and fussy. They give him few medications, injection (through IV line) and oxygen support. On Thursday, he meets the doctors who had invited him. By the end of the day, he is fit and fine. So, with the satisfaction of keeping up with the invitation, he is happy to come back home on Friday.

My favourite part is the way the nurses fuss about him. The nurses who attended to Vignesh when he was in the PICU during tracheostomy. Even though most of them have moved to different departments in the new hospital, when the word gets around that Vignesh is in hospital, they make a point to drop in and say hello to him. They just love to see things that he has learnt. They would want to take him around and play with him and there is also a tight competition of who gets to carry him around. They just show so much of genuine love.

At a time when Vignesh was on prolonged ventilation (during tracheostomy) and I wasn't allowed to be with him, they were the people who took care of him so well. They took care of him with the dedication of a mother. I'm so grateful to the doctors who have saved my son. And, I'm equally grateful to the nurses there. A noble profession done in a noble way.

An Amazing Feat

2009-07-17T22:42:00.004+05:30

Today we had Vignesh's tracheostomy tube changed since the previous one was getting dirty. It was done by the ENT who had done tracheostomy for Vignesh 5 months ago. I told him about how Vignesh was breathing through his nose these days. The doctor confirmed it. Later, I asked him about the speaking valve (not sure of the exact term) and if I would be able to get one for Vignesh in Chennai. He felt it was highly improbable. Instead, he wanted us to close the trach opening for short intervals and encourage him to speak. This is one thing I'm extremely scared of and uncomfortable with. Every time I close his trach I feel guilty. I feel like I'm harming him deliberately. I just told the doctor that I was scared of doing this. That is when it happened.

The doctor kept a gauze piece over Vignesh's tracheostomy opening and closed it with his finger. We were simultaneously monitoring his stats. Once he closed the opening, I was expecting the stats to fall because in March he wasn't able to breathe without the tube support even for a few seconds. It was a complete miracle. Vignesh maintained his stats between 94 - 96% with the trach tube closed. And, the doctor had the opening closed for about 8 to 10 minutes. He might have even continued for a longer time if we had continued the exercise. Except for a slightly increased effort, Vignesh breathed beautifully on his own. It has given us something to cheer about and filled us with new hope. Way to go big boy!

Vignesh turns 1 - Birthday party pics

2009-07-17T00:18:00.011+05:30

Blackforest cake from mom n dad

Strawberry cake from aunts

Cake cutting with mom

Cake cutting with dad

Getting down to business

The Picture says it all

Heres more

Time to relax

Vignesh Birthday Celebrations

2009-07-16T22:54:00.013+05:30

I had been away from internet for a long time. Therapy center is a little far from our new home. Also, I'm still setting the home. Above all, was busy with Vignesh's birthday celebrations. I had previously thought about postponing his star b'day celebration until decan. But, after the last visit to the doctor, I did not see any point waiting. So, we went ahead to celebrate his star birthday in the traditional way on the 5th of this month. And, his 'official' birthday party celebration (based on the sun sign) was yesterday. The house is still in mess and there is a lot of cleaning work to be done tomorrow. Ok, before I begin to rant any further, let me just go ahead and post some of his b'day snaps.

July 5th Snaps

With parents during the religious function

Two most important people in my life - my father and my son

With the religious mark on forehead

With dear mom

In kurta and dothi

Paying respect to God

Tired posing for pics

And, the hard luck continues

2009-07-01T15:46:00.010+05:30

So, its back to the same place where we started 5 months back! My husband and I were nervous and our eyes were filled with tears even as we waited outside the PICU. We were called in sooner than expected. We could hear the doctors discuss the case which made me realise that decan wasn't successful. Anyway, I asked my husband to first peep inside and see if the trach was still in place. He said that it was. He also wanted me to come and have a look at Vignesh, who was in sedation. I did not. Probably, I was shying away from facing the truth.

Doctors came and told us that things are as bad as it was 3 months back. Looks like it isn't as simple as it seemed then. There was no improvement in the tracheal edema (subglotic stenosis) and there was still significant laryngomalacia. So, decan wasn't even attempted.

I just listened to what the doctors said and my husband asked a few questions. I just stood there, nodded my head and even smiled!!! I felt as a mere spectator and watched as if I was in no way involved with all this. I just took all the sorrow and locked it up in a corner of my heart. And, this place in my heart is growing heavier by the day as I have started to lock away all my disappointment and worries for months together now.

Since then, I have just shed a few tears - once yesterday night where I cried into my pillow and then today morning locking myself in the bathroom. But, it was just for a minute or two. I'm afraid to cry because it would pain. Because, it would remind me of all the things that we are going to miss out due to tracheostomy. Of all the implications that this small tube would bear on the lives of 3 of us. I actually began to think of these yesterday, but along with tears, the feeling of helpless began to fill in. So, just diverted my mind. So, I guess I would cry my heart out the day my son is decannulated. It might take months or even years. Until then, these tears can wait locked away in a remote corner of my heart.

A Wicked Twist

2009-06-29T17:53:00.008+05:30

From the desk of Sumithra,
06/29/09

What happens when temperature changes from 40 degrees to 30 degrees in a matter of few hours? This is what happens:

To give you a background on the latest developments, we have planned for a trial decannulation for Vignesh this week to see if we can get rid of his tracheostomy. Based on his assessment on the 30th of June, we will decided on the next course of action.

When we started on Sunday from Chennai, the city where we reside, it was so hot. I was so happy to find the weather much cooler in Bangalore. But then, I hadn't imagined this would make Vignesh end up with cold and cough. That too, just barely about 2 days before his broncoscopy and trial decannulation. I know there is no good time to catch cold. But, why now?

To be honest, I'm so tired of this tracheostomy. We had wanted to have this appointment as early as possible since Vignesh is turning one on the 15th of July. On his birthday, I want to be woken up hearing his voice rather than the sound of bubbling secretions. Is it too much to ask?

We were so busy manipulating date well before 15th of July, that we almost forgot about his 'star' birthday.Just like the sun sign in English calender, we have star signs in our calender. Although, these days most of us celebrate in accordance with the English calender, the first birthday alone is an exception. Here, the first birthday is celebrated in accordance with the tamil calendar and the day is filled with prayers and a lot of rituals.

Vignesh's star birthday falls on the 5th of July, this year. Since the trip was already planned and also our priest told us that tracheostomy might be a hinderance in following the rituals (he wants us to get a clearance from our doctor first), we have postponed his star birthday celebrations.

So, I guess we would be spending the day at the hospital. And, I'm hoping that even if we are unable to follow the rituals, decannulation in itself would be a more happier form of celebration and the best gift that God could give Vignesh and his parents during his birthday.

So, tomorrow is set for bronchoscopy and trial decannulation. Hope his cold and cough does not play a spoil sport. Please pray for Vignesh's successful decannulation. Would keep you all posted. Goodluck to us... :-)

An Adventurous Start!

2009-06-28T21:23:00.010+05:30

Vignesh and I were stranded. My cell phone was with my husband. I dint have sufficient cash in hand. Although, I did have my card with me, the ATM was no where in sight. Above all, I did not know a word of the local language. But, it does not matter much as most of the people there could speak English or my mother tongue, Tamil. But then I was scared because it was a new place to me.

I watched helplessly as the train moved away before my husband could get down. He had helped us get down at the Banglore contonment station and gone inside the train to get the remaining baggage. Since the train windows were tinted, I could not even see my husband when the train started. I was shocked and clueless.

Even as I was trying to reclaim myself, I was a little relieved to find the suction equipment was lying with me. It was a small railway station and the only telephone booth there was closed. I was carrying Vignesh and had three heavy heavy bags with me. So, I just stood rooted to the place.

Thankfully, a person who helped with my luggage at the Madras railway station happened to pass by. He asked me if I needed help with my luggage again. I told him what had happened. He offered his mobile phone and I called up my husband to make alternate arrangements. The stranger also carried my luggages and found a place for me to wait and then left. Another reason to believe that the world still has a lot of good things in store for us.

Although, my friend came over to pick me up from the railway station immediately, every second of the wait was overwhelming. The tracheal secretions were increasing by the second. I was looking around to see if I could ask anyone to help me with the suctioning. I did not know whom to ask, what to ask, if they could speak the same language as me and even if they did, will they be ready to help me.

As soon as my friend came in, we were able to reach home in about ten minutes. I was able to breathe a sigh of relief only after I reached their home, set up the suction machine and cleared the secretions. My husband joined us after some time.

It was later in the day when I was pondering over the events that happened earlier in the day. I asked myself, "Why did I feel so helpless in the morning?". Although, there were a number of contributing reasons, I guess the most troubling part was tracheostomy.

The day my son gets rid of his tracheostomy would be the day of our freedom and true joy and celebration. And, I'm just hoping that the day is not too far off. Please wish us luck and pray for us as the big day is just around the corner. Will keep you all posted!

A dream come true!

2009-06-09T05:49:00.005+05:30

I'm excited! It has been my dream for a long time. Even before my son was born, I had dreamt of a beautiful place for my baby to grow up. Not the cramped up and conjested location that I'm currently living in. Finally, my dreams have come true. Today we are moving to our new home. Would post photos of the new home and house-warming function once I set up the computer and internet there.

Moving on to the updates, Vignesh is becoming a big boy. He shakes his hand when we say hello. He is now able to rest on his hands and rise his body whenever he rolls over to his tummy. He is also trying to crawl. But the lazy bum refuses to do anything that involves even a slight physical effort during the therapy sessions. He has become smarter though.

When his therapists try to give him exercises that he doesn't want to do, he does not usually cry. Instead he tries to distract us with his cute smile or would turn his body and fall on our lap or simply would not budge. Thankfully, his therapists have got a lot of patience and do not give in to his antics. His therapist also said that his upper body is gaining strength by the day.

Every milestone achieved brings a lot of excitement and I'm just waiting to see him surprise the world with his talents.

More pictures

2009-06-01T10:10:00.010+05:30

New hairdos

Sleeping during therapy sessions

The Miracle called Life

2009-05-26T21:58:00.007+05:30

These days, half of my day is spent at Vignesh's therapy centre. His PT and OT are supposed to last for about 45 minutes each and his therapy centre is less than 10 minutes drive from my house. So, technically, I should be back home in two hours time. But, this is never the case. For instance, today it took us a little over 4.5 hours to get back home after the session. Because, Vignesh needs a lot of cajoling to do his therapy; because between his PT and OT session he needs a break - to relax/sleep, to eat, to play with his parents and to gaze around at the other kids; And, a lot of time is also spent on frequent suctioning during/between the sessions.

Spending so much time there, makes my life even more hectic because I have to squeeze my other chores to fit this schedule. But, I don't complain. I love spending time at his therapy centre. Because, I get to witness so many miracles before my eyes. A young boy who has suddenly learnt that he can walk on his own, trying to run around with so much pride and happiness on his face; the boundless joy of a mother who learnt that her daughter (who has been so long treating her mother as she would any other stranger) has begun to give her a special place in her life;

Life is filled with miracles. When our children speak their first words or take their first step, we are so happy and proud. But, when these things happen after a lot of wait and a lot of hard work, our joy is mulitiplied. Apart from being proud of our child, apart from being overjoyed, we also begin to appreciate the worth of every milestone and celebrate miracles in their true form.

And that is exactly what I do everyday. Even as I wait for my son to complete his therapy, I see a lot of these miracles before my very eyes. Kids proving that being 'different' does not mean being 'less' and their parents standing beside them and celebrating every single achievement.

I have the feeling of watching a real time, feel-good movie. But, unlike in movies, it isn't just the ending that is happy. Every phase of the journey is filled with challenge, celebration and happiness. And, even as I'm an audience, I guess there would a lot of others who would be watching the story of my son and his parents and rejoicing our journey of our life as we sail through it everyday.

Down Syndrome – The Feature(d) Article

2009-05-20T14:03:00.019+05:30

It was an hour after Vignesh was born. My son's pediatrician came over and said, “Your son might have Down Syndrome”. I did not have any idea what it was. Once I went home, I went online to search for whatever information I could get. I began to read blogs to get a clearer picture.

It was during these times, I came across an interesting blog written by a father of a young down syndrome girl. In one of his blogs, he had said how peculiar he used to feel when people sometimes told him that it did not look like his daughter had down syndrome. A lot of readers on the blog also said that they were annoyed when someone made a similar remark. I could not understand their feelings back then.

Just last week, I was speaking to a close friend of mine. She told me that Vignesh doesn’t seem to be having DS features. I could not help laughing. Although, I tried to make her understand that my son did have DS features, I guess she felt uncomfortable about the conversation and kept changing the topic.

Right from the moment that Vignesh popped into this world, we have adored him for what he was. And, I’m so proud of him. Proud that he has fought more battles in these 10 months than I have in my 30 years and did so with a smile and resilience. Yes, at times, there is fear of the future. But, I guess, DS or not, every parent has those moments of fear about their child's future.

And when it comes to his physical appearance, in my frank opinion free of any manipulation, I strongly believe that devoid of DS, my son would not have looked all that handsome as he is now.

Vignesh at birth

By denying him of DS, you are just taking away all these beautiful features away from him. For all that you know, Vignesh would not have had such expressive eyes, whole-hearted smile and that cute nose, if it was not for DS. I really love him for whatever he is –from the bottom of my heart.

Proud Moment

2009-05-14T21:26:00.004+05:30

Vignesh has made his parents proud again. When I asked his therapist if I could try this, he did not believe my son could do it and I could try it if I wanted to. I did try it anyway and he proved his critics wrong. Just a couple of hours back, I just tried to feed him through a straw and YES, he was able to drink through a straw. I'm so happy and proud of my cute little genius.

Vignesh at his Therapy Sessions

2009-05-13T18:18:00.022+05:30

Physiotherapy session in Progress

Occupational Therapy Session

Waiting to be consoled and pampered

Father's Love Therapy

The Other Side of Vignesh

2009-05-05T18:39:00.004+05:30

Vignesh started his PT and OT classes when he was about a month old. But, every time there was some health issue that prevented him from attending the therapy regularly. After all the obstacles, we started his therapy about two weeks back. This time we are determined to take him regularly to his sessions. As usual, this time too, within 2 days he developed some sort of stomach infection. But, we did not want to give up this time. We gave him just enough time to recover and after 2-3 days we again started with his therapy classes.

My son has always been a strict disciplinarian. He goes about his work without complaining. Whether it is bathing time or sleep time, he is happy to follow his schedule. Touchwood, he is always happy and its very rare to see him cry. Sometimes, it makes me think that my son is more responsible and matured than even me. There are times when he was on ventilator and in pain and all that he let out was silent tears. That would melt my heart away. Only occasionally did he cry and that too for valid reasons. Even today morning, when I woke up, I saw him play by himself with his toys on the bed, instead of crying or trying to wake me up. He makes me so proud of him.

But, in the past two weeks, I'm getting to see the other side of my son.

He refuses to do PT. It is normal for children to cry during PT sessions. But, this guy goes beyond that and cries until he turns red from coughing. He closes his eyes tightly shut and would not open them as long as the therapists are near him, no matter how much we try to console him. He makes his body stiff so that we cannot try to make him do therapy. And, no matter how active he was before the session, he would doze off after crying. We have attempted a lot of strategies. But, Vignesh just outsmarts us. Today, he was crying so much during the session and dozed off. But, the moment we came home and I lay him on the bed he began to smile and played all afternoon.

It really makes thing difficult and makes me angry. I'm not sure how we are going to make him do PT. But, in some corner of my heart, I enjoyed seeing the childish persistence in my son. A new Vignesh - completely different from the more matured person that he normally is. Although, I wish he continues to be a disciplined person most of the times (and esp during his therapy sessions), I would still be eagerly waiting for the naughty person in him to show up once in a while.

Mission - July 15

2009-04-21T14:01:00.013+05:30

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

2009-04-16T15:47:00.013+05:30

A Disturbing Blog

2009-04-14T20:22:00.008+05:30

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

2009-03-28T23:19:00.001+05:30

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?

2009-03-28T13:22:00.001+05:30

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

2009-03-28T10:24:00.002+05:30

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!

2009-03-27T19:20:00.001+05:30

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.

Waiting for Wednessday

2009-03-18T20:19:00.000+05:30

Wednesday is going be the big day. We've been waiting for it for more than a month and a half now. We're hoping for things to go on well. If everything works out in our favor, my son would be getting rid of his tracheostomy on Wednessday. Doctor would first be conducting a bronchoscopy to see if the swelling in the tracheal passage is gone before removing the tracheostomy tube.

True, that tracheostomy has helped my son in a lot of ways. When my son couldn't be extubated, tracheostomy seemed like a boon. Because, it put an end to a lot of things. An end to the pain that he was undergoing due to prolonged ventilation, an end to being sedated for more two weeks, an end to not being fed anything orally, an end to him being confined to bed when he should be enjoying his life without any problems to worry about like any other 7 month old.

But, it had its own disadvantages too. As long as the tube stayed, we would not be able to hear his voice (we terribly miss his cute babbles which we are hoping to enjoy from Wednessday). Also, he requires frequent suctioning - about once in 15 minutes to half hour when he is awake and about once every hour or two at nights. Its really tiring us. More than us, it is causing my son a lot of discomfort and he has started to cry and push us off when we try to suction. And most of all, although he has freedom of movement some extent, we can't let him roll to his tummy with the trach tube since he hasn't gained head control yet. Also, we are unable to take him out except for his hospital visits and short walks in the terrace because he needs frequent suctioning and it is difficult to carry the suction machine wherever we go.

So, an end to all these discomforts is just a day and a half away. I'm feeling like a school girl about to take my board exams. I'm sure it would soon be Wednessday afternoon and we would be eagerly waiting for the doctor to complete the procedure and give us the good news. Till then, I'm keeping my fingers crossed and being optimistic. Hopefully, next week I would be happily narrating about my son's successful decannulation in my next blog. Until then, good bye!