one day left to live series - 14 months and 26 days

Yet another busy week.

Its been a while that our pediatrician has been advising us to keep a local neurologist here in Orlando in loop with regard to Sripathi's condition. That way in case of an emergency we would have someone here in Orlando address his case immediately rather than wait for directions from Texas. So on that regards we finally visited Dr.K, Sripathi's neurologist on 18th January here in Orlando. Hearing about Sripathi's short seizures during sickness she prescribed Clonazepam 0.25mg twice a day on days when he is prone to seize. Generally Sripathi is to prone to seizures when he has any bodily discomfort like congestion, constipation, fever or on days he gets vaccination shots.

In addition his neurologist wanted to get an EEG on Sripathi so that she can know his current condition. So we went to her office again on 20th January. The EEG went fine, we are expecting the results next week.

BTW in between on the 19th Sripathi got his first haircut. His hair had grown real long, but we were not keen about getting his hair cut any sooner because its our family tradition to visit our family deity in Tirupathi for the first tonsure. But his long hair was causing several health issues, like cold and fever. So upon consulting with the elders from our family we were advised to get his hair cut but to collect the cut hair and to offer to Tirupathi the next time we travel.

So Sripathi is all renewed with his new makeover ;)



And over a couple of weeks we finally got the swing setup for his therapy. He seems to really enjoy being on the swing. TOUCHWOOD.

Satsang discourse on Namdev

We started yesterday's Sunday Satsang with Nama followed by a beautiful discourse on Namdev Maharaj by Rupali ji from our satsang. We then learned the last sloka from Chatur Sloki bhagavatham.
And the satsang concluded with Kaliyayum bhali kollum kirtan with Nama.

Here is a snippet of the discourse.

one day left to live series - 14 months and 18 days

Well just as we thought Sripathi was doing fine and all the good stuff suddenly on Monday the 10th he had a seizure at around 4:00pm and this time we were at Starbucks having chai after some work at Fedex all this happened with 20 minutes since we stepped out of the house. We hardly take him out when we have some work, Aravind does most of the 'going out' chore even grocery shopping.

We immediately got back home and Sripathi took a nap. When he woke up at 6:00pm, he felt warm and as expected he was running temperature of 101.7

So we gave him some cereal and Acetaminophen and put him back to sleep. We kept repeating his medicine every 4 hours. But things started getting out of hand. At around 1:09am he had another seizure. It was a short one, but then again at 1:16am he had another and this time he was screaming like he did the last time he was given the DTaP. I woke up Aravind and within seconds Sripathi stopped seizing.

But then again at 1:29am he had a similar seizure with all the screaming. I could not wait longer. A Diastat is recommended only if Sripathi's seizures last more than 5 minutes. But the scenario here was different. He was suffering with seizures in series. I asked Aravind to get the diastat and we immediately administered it rectally. But as usually he pooped immediately. So it’s obvious the medicine would have been excreted. But we decided to wait and see in the seizures would stop.

But no, it happened yet again at 1:40am I guess, so I gave him another diastat and this time also he pooped but not so immediately so we were praying at least some medicine would have entered his blood stream.

Well it worked and he finally stopped seizing and was in postical state and in sleep.
In the meantime his fever did not reduce and we kept up with the Acetaminophen.
And somehow dawn broke.

He seemed fine the fever going up and down based on when was due for another dose of Tylenol. But suddenly when he woke up at around 9:04am and as I went to pick him up to feed him some breakfast he again had a seizure at 9:06am which lasted somewhere around 30 secs.

That afternoon we had a scheduled appointment with his pediatrician for a vaccination. Obviously he was not given any shot. And the doctor tested his throat and nasal samples and said that he did not have any major infection and just asked us to continue the Acetaminophen every 4 to 6 hours.

But by evening he was okay, tired and all but still seemed okay.
But the night was difficult he could not sleep between 1:00am and 4:30am
And due to some infection or whatever I kept coughing between 1:30 and 3:30am
Poor Aravind was awake trying to put Sripathi to sleep while I was in the living room trying to figure out ways to control my cough.

The next day he was okay I mean really okay no fever no seizure!
But was not a happy baby, he seemed so dull and exhausted. He is still the same I would say. It’s Friday and he still seems not like is usual happy and all smiles baby.
Hope the beginning of Thai month brings back all his cheer for tomorrow and forever.

Happy Thai Pongal to all!!!
From this Thai, let our lives be filled with Bhakthi and as our Guruji says
Bhakthi is "Krupa Smaranam" Always Be Thankful to the GOD.

one day left to live series - 14 months and 10 days

The last month was a roller coaster ride.

I left my last post with an appointment with the ophthalmologist.
It went fine. Dr.B felt that the nystagmus was more due to a neurological disorder. Otherwise he felt that Sripathi was a little far sighted, but yet within the range so he also suggested to give it time. Apart from that his congestion has improved with the use of the nebulizer.

BTW with the recommendation from the occupational therapist at Shriners hospital we bought Sripathi the vest from SPIO. It really seems to help his back, when i prop him up. And also even otherwise it makes it easier for us to carry him with the suit on as it controls his tone to some extent.

For the new year we had been to Houston Namadwaar to participate in the Nama Sapthaha Utsav held between 27th December 2010 thru 2nd January 2011. It was a long and joyous event. Sripathi sure enjoyed all the attention.

We returned from the Utsav on the 1st of January 2011 and both I and Sripathi fell ill. But we sort of recovered within a day or so. We had to because Sripathi had a follow up appointment at Shriners on the 4th of January.

He was provided with the orthopedic braces for his legs. They also customized a standing frame for Sripathi. Since we did not have enough space in our car we could not bring it. But Shriners is kind enough to hold it for us. We never imagined that we could get a standing frame for Sripathi, and even if we could get one we were not sure if we can afford one, but blessing are abundant that we not only got the standing frame right away the fact is that it is provided to him for free. Shriners is actually lending us this Standing frame for free for as long as it fits him.

So as we are counting our blessing this year, we love to wish everyone a very happy, healthy, satsang filled, prosperous new year 2011.

one day left to live series - 13 months and 14 days

First of all, thank you all for your kind wishes. We can never say 'no more' to 'well wishes'.

This is going to be a long post.

It all started on the 1st of December, Miss.Peg was home for the Wednesday PT session and noticed Sripathi's eyeballs were staggering. I told her that I’ll check about that with the doctor as he was due for the second flu shot on that day. At the clinic the doctor described it as vertical nystagmus. The flu shot was canceled. She said she would contact the neurologist at Texas with his condition. That evening she called to let us know that the neurologist wanted us to contact the neuro ophthalmologist as he did not suspect any neurological activity that could cause nystagmus for Sripathi. Unfortunately our neuro ophthalmologist at TCH did not respond. So our pediatrician suggested that we visit an ophthalmologist here in Orlando. The next day was Sripathi's vision therapy session. So when Miss. Susan came home she also checked his eyes and started noting down certain points that she said she wanted to research further. Her concerns were not just the nystagmus, but as to why Sripathi is not tired of playing his one eyed jack game. He seems to be cultivating a habit of closing one eye most of the time. Maybe he has better view and focus with one eye. If that is the case we need to correct it at the earliest. She asked me to talk to the eye doctor about it.

Our appointment with the eye doctor is only on the 14th of December. So while we were waiting, a lot of other surprises cropped up. No doubt it all began with a seizure at 7:40 am on the 5th of December. It was while Sripathi was trying to take another nap that morning. Later that evening half way through the Sunday Satsang he fell asleep. While I stepped into the kitchen to get the prasadam for neiyedyam Sripathi started another seizure. This time we thought that his congestion was working him up. After that he was in posticale state and did not wake up until morning, sadly with another seizure at 6:17 am. This one was long. We immediately called the neurologist at TCH and left them a message. Then we called our pediatrician as we wanted her to check him for congestion.

So on 6th we went to the pediatrician again. She checked him thoroughly and said his lungs were very clear. All his congestion is working up only in his nose and throat. But since it seems to be bothering him too much she prescribed an antibiotic AMOX TR-K CLV. Also Xopenx via Nebulizer. The same day the nurse from the neurologist 's office called and confirmed to increased Sripathi's Keppra to 5.5 ml twice a day and of course we have to hold on the wean off process on phenobarbital for another week.

I can really tell he felt better with the nebulizer that night and also the following day. But on the 8th he had another seizure while he was taking his afternoon nap and right after the seizure he relieved himself of gas and also pooped. I cleaned and changed him and he went right back to sleep. The pediatrician had mentioned that the antibiotic could cause loose stool and I guessed that must be it.

But that night rather just before dawn on the 9th of December at around 3:20 am, Sripathi started breathing heavily. I could not tell if he was having a seizure as he was not stiff not were his eyes pulled to any direction, he was nodding his head rubbing his nose taking real heavy breaths. I woke up Aravind and we were both trying to calm Sripathi. I picked him up and after a while he seemed fine and went back to sleep. We were confused as to what was happening. Should we call 911? But he is sleeping again and does not seem pale or irritated anymore. So we did not want to disturb him. And he seemed to be fine that rest of the morning. But later that afternoon when he was taking him nap, 12 hours after that last breathing episode he did the same thing again, woke up dazed, nodding his head, taking really heavy breaths. He seems so uncomfortable and when I picked him I noticed he had been drooling so much that there was a big wet spot right where his head was on the mattress. And he kept taking deep breaths even as I was carrying him. I then recorded it so I can show it to the doctor. I then called our friend Dr.Lekshmi at Houston, I was so confused and tensed that I lost my manners to excuse myself for calling her during her working hours. I just said Radhe radhe Lekshmi ji please listen to this and I put the phone near Sripathi. She asked if he was coughing. So that's how loud his breathing was. I told her it was how he was breathing and I told her he was drooling and seemed very uncomfortable. She was worried that he was having an infection in the throat and probably it was swollen and he is finding it difficult to breath. So she asked me to take him to the doctor ASAP.

I called Aravind and told him that he has to come home and we need to take Sripathi back to the doctor. I called the doctor and they asked us to come in at 4:30 pm. Dr.C checked him again; she felt he was doing really well. They checked his SP02, that is the oxygen intake while he was lying, while he was being carried and also while he was sleeping. It was between 95 and even reached 100 while he was sleeping. So the doctor was happy that he was getting enough oxygen. She saw the video and she also checked his throat and said he had no infection and no swelling. So it must be just the congestion.

She asked me to give Sripathi normal Saline via nebulizer. She said probably the Xopenx is opening up his lungs well but his congestion in the throat is not clearing out and that's the reason he is not getting sufficient air. And she also asked me to continue turning on the humidifier. We were doing all that he seemed ok but at times we can notice that he is breathing through his mouth.

Phew as things were getting so and so better on the morning of 11th December I noticed a white discharge when he was peeing. "No I don't usually open his diaper and see how he pees." But that morning I was cleaning his diaper as he had just pooped and just as I was changing his diaper he peed and that’s when I saw the white thing and strange that even Aravind was beside me watching the same thing.

It was a Saturday, usually only the nurse would be available at the clinic but we still wanted him checked. Fortunately Dr.C was in that day. We took him in at 10:30 am of course they put a bag on him to collect his urine samples. The doctor came and checked him. Dr.C said he was good, she could not find anything wrong. And I trust her, though he is been going through a lot in the fast 2 weeks and still Dr.C tells me he is doing fine. I don't worry if she was being careless because she really gives attention to Sripathi and is always very cautious before any vaccination or prescription. So far she was able to catch his problems well before they become critical.

So we wait till 11:50 am and Mr.Sripathi does not want to pee even after drinking 4 ounces of milk and close to 7 ounces of juice. Usually the clinic closes at 12:00 noon. They would have waited but Dr.C had a meeting later that afternoon. So she said the nurse will teach me how to go about the whole urine testing process and that Dr.C would call me at home at around 3:00 pm to get the results.

To before we left I did the cleaning and bagging process so the nurse could make sure I did it right if in case we had to do it again at home. Then she gave me the urine testing strips. It was simple all I have to do it collect the urine dip the strip and start writing down the results that is see the change in color of the various tests.

So at home 30 minutes after we had changed his bag he peed. Oh and this time we did not notice any white stuff. I have to admit I'm bad technically and Aravind is almost color blind. So now you can be sure that our results were wrong. And we did not realize it until the doctor called at 3:00 pm and asked me to redo the test and that she would call me back at 5:30pm

Sripathi woke up at 4:00 pm. I fed him and gave him a warm bath and put a bag at 4:40 pm. Sripathi just would not pee and I was told to clean and rebag him if he does not pee within an hour. It was almost 5:25pm. I did not want to mess it this time. So I cleaned him and bagged him again at 5:30 pm. Finally he peed at 5:40 pm. This time I carefully tested the strips and noted the results at the accurate time. And doctor called at 5:45 pm
She was happy about the results mainly the Leukocytes and the nitrates in the urine, which were both negative.

Oh and yes I did not see any white discharge this time too. So I though it must have been something on the diaper. Anyways the doctor asked me to call her if we find anything unusual. But so far he is pretty fine.

BTW in all this confusion I don't know how but I had poured hot water yeah hot water on my face. I have a few burns on my cheek and forehead. Please don't say "ahh". I'm doing fine and the burns are drying and healing real fast. I thank God that it was my face. I cannot image how difficult it would have been to handle Sripathi had the water fallen on my hands or feet. I have never heard anybody, by mistake pour hot water on their face; it would usually be the hands and feet. It was my karma that I have to suffer burns but look at the grace of God; he made it easier for me by making sure I did not hurt my needed hands and legs. I'm just flabbergasted by his grace.

Tomorrow is Sripathi's appointment with the eye doctor. Keeping my fingers crossed.

one day left to live series - 12 months and 28 days

It was a long Monday. We had a scheduled appointment at Shriners hospital for children to discuss with Orthopedics based on suggestion from Sripathi’s physical therapist as he would soon need special equipments to help him sit, leg braces to help him bear weight on his legs and possible a wheelchair.

But first we had to meet with the nurse practitioner who would first read and understand Sripathi’s case. Further they did the x-ray of his spine to make sure it is taken care of before it starts curving or bending like it happens for most hypotonic children.

The Occupational therapist was kind enough to see us on short notice to discuss about Sripathi’s car seat, one that can be used for all types of travel mainly car and flight (to carefully transport him to Houston as needed) Unfortunately the products were extremely pricy and extremely difficult to handle and worst scenario was they were not fit for air travel. So we are just going to investigate further and try to work out without a special needs car seat with just the options available from Britax. We are just waiting for further inputs from therapist.

But apart from the car seat, she provided us with arm holders for Sripathi to learn to weight bear on his arms. She showed us special needs bath chairs. If we were in India I’m pretty sure bathing a special needs child would have been different. But here in an American apartment where I doubt a special needs bath chair for Sripathi may not fit, I’m desperately looking for alternative ways to help support him while bathing.

By the end of the day Sripathi was taken to the prosthetics department to get a cast of his legs. Sometime in January he will have to go back again to get the braces for his legs. We also have further appointments for his wheelchair and other special needs equipment evaluation.

We had left our house at around 9:45 am and returned only at 7:00 pm. We were all tired especially Sripathi.

To further append his list of troubles, Sripathi cannot wean off Lactulose rather we may have to go up on his does because he is not relieved of constipation. We visited the gastroenterologist the previous week and she confirmed that hypotonic children like Sripathi always need help to gets their bowels moving.

And his water therapy is not as successful either. He is not confident about staying in the water. And I’m not the least confident of letting go of the neck ring which will I suppose facilitate him to experiment. And Nancy from water ways has e-mailed me to check on our progress. So I’m thinking of capturing the therapy session on video and send it over to Nancy, maybe she can help suggest what I could do better.

It was thanksgiving, wanted to share this from the book of Ecclesiastes

To everything there is a season, and a time to every purpose under the heaven:

A time to be born, and a time to die; a time to plant, a time to reap that which is planted;

A time to kill, and a time to heal; a time to break down, and a time to build up;

A time to weep, and a time to laugh; a time to mourn, and a time to dance;

A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;

A time to get, and a time to lose; a time to keep, and a time to cast away;

A time to rend, and a time to sew; a time to keep silence, and a time to speak;

A time to love, and a time to hate; a time of war, and a time of peace.

Happy Thanksgiving!

one day left to live series - 12 months and 22 days

Updated video of photographs taken on Sripathi's 1st birthday on the 29th of October 2010, the evening satsang and his Ayushya Homam on the 15th of November 2010.

one day left to live series - 1 year and 7 days

Happy Diwali to your family from ours

Sripathi is a year old now. He started taking whole milk and has almost stopped taking Formula. In the past 10 days he met his hematologist who tested his blood and mentioned that Sripathi's hemo levels are at 13 which is great. He also visited his pediatrician and had his prevnar shot finally. And yes he has been doing fine after the shot. We have postponed his gastroenterologist appointment. And also we are weaning him off the Lactulose. I found that Avocados help with his constipation. So he gets a quarter of the pulp every day. Also the stage three Gerber foods - pears and blueberries also help.

Sripathi had a wonderful birthday celebration with satsang. He wore kurtha and dhoti sent by his paternal grandparents. Of course he received a lot of toys and books from his satsang family. Thanks to Lekshmi ji and Jeevan ji family for send me this wonderful book. This should really help me help Sripathi with the ABM. - Move into life by Anat Baniel.


Sripathi's water therapy is going great. So is his physical and vision. His occupational therapy is on hold for now.

BTW October 31'st is Halloween here in the USA. Aparna had given me her elder daughter Sadhana's Halloween costume for Sripathi. So here he is dressed up as Tigger from Winne the pooh.

We are now trying to get Sripathi to use a sippy cup. I found this product - think baby which I think should work for Sripathi. Let's see.