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.