one day left to live series - 24 months and 25 days

We have been traveling to Houston back and forth for the first couple weeks of November. We had the appointments with the Neurologist, the Spine Doctor, a long 4 hour MRI.
"All is Well"

So the 4 hour MRI on Sripathi's brain and Spine came back with no bad news. Of course his brain is still large and it was obvious that it was due to the enlarged white matter but in addition to that we learnt that the white matter is nearly double its size for this age. Also the doctor mentioned that he noticed polymicrogyria on Sripathi's frontal lobes they are the main reasons for this seizures ans delays. Sadly we can do nothing about it. They will just stay. Other than that we were surprised to know that there are 3 or 4 more children like Sripathi with all the similar diagnosis. Well since they are all around the same age we really don't know what is store for his future. Well I hope all these children have a smooth way all the way! Yeah there will be bumps we know that and we expect them but not bad enough to bog us down.

Well then came the Spine Doctor who said Sripathi's spine is just fine know and that he will check back on him in a year. Although there are several chances that Sripathi could develop scoliosis its still a long way ahead so we were not there is nothing to worry about as of now.

We came back and Sripathi was getting back to his therapy schedule and now my husband returns home on Monday and suggests that we go back to Houston on Thursday and stay there for Veteran's day. Well its not often that he gets a break and I don't want to be a spoil sport so we leave and plan to return on Sunday only that my husband fell ill and we returned only on Monday. And guess what the very next day me and Sripathi were down with cold and fever for the rest of the week.

Sripathi got a little serious this time with cluster of seizures controled by an increased dose of diastat and then wheezing. Well with Dr.B on our side we were able to get his back to normal in 10 days. He was given an antibiotic, a steroid and a medicine through the nebulizer.


BTW in between our trips, one day I took Sripathi for OT and half way through the session the therapist sort of asked me if I find any improvements with Sripathi since we started OT. And I was positive because he has shown a lot of improvement. A baby with a head circumference of 55 cm that is heavy are a rock is fighting all that to learn to hold is head up is THE most incredible thing in the world. Well that's what I think because the therapist was not happy with the progress. Basically she was not happy about Sripathi's visit with her. So as i was waiting for this conversation to end, she was almost direct in saying that we should probably look into a different home health service to provide OT for Sripathi. Well as the story goes that was the last time i saw her.

So we are not back to searching for another OT, I've asked ECI to provide us with an OT again. Hope this time they have a quicker turn around because the coordinator mentioned that they have new OT's joining their team.
Also she told me that they would give me an application for the Respite care. That we I could have a friend or caregiver for Sripathi for 20 Horus a month.
The best part is our friend is a professional OT from India since she is not licensed here in America she is not working as an OT here. Yet I could pay her with the respite time and money and have her provide OT for my son.
Keeping my fingers crossed!!!

Okay its Thanksgiving weekend and so I took the time to call my two most favorite people in Florida, Miss. Peg, Sripathi's first PT and Miss. Susan, Sripathi's first VT. Ah it was so nice to hear their voice and so nice to know they are doing just fine. Here's wishing to "Thank" everyone we've met in this thrilling journey during this Thanksgiving 2011.

Happy Thanksgiving!

one day left to live series - 23 months and 19 days

Sripathi is happy and completely unaware that its going to be 2 years since he set foot on earth. Oh though not literally he has not yet "SET his foot down" but that's okay.

BTW we bought Sripathi a Bantam stander. He as been working to stand up for almost 2 weeks now. He is okay for the first 20 minutes and but after that you better get him out of there.

Last weekend we had been to the willow bend mall because our PT suggested taken him to the play area at the mall. Well we didn't like it that much, for one it was very crowded and not a thing in there that is suitable for a special needs child. So I'm definitely not going back there to feel bloody left out. oh and those typical child suck!

BTW the most important thing that i got to update here is Ms.Marianna Bond's visit. She is an Assisted Technology Specialist. She is going to help us determine what AT will be suitable for Sripathi and also help fix his car seat.

one day left to live series - 22 months and 30 days

Last week was so enriching. We got to meet two people who are helping shape Sripathi's life.

1. Karin Duffy, the program coordinator at DARS Division of Blind Services. She is herself blind from birth due to a recessive gene. She came home to learn more about Sripathi's needs. She gave her two cents on what else i could try with Sripathi apart from what i learn from his TVI. Also she strongly recommended meeting with Dr.Roman.
And so we did go ahead and get an appointment with her in December and also a backup in April, just in case we are unable to travel. (I'm already shivering thinking about how cold it will be up there in Pittsburgh during winter.)

2. We got to meet the John Bramblitt. I was so excited after reading about him and watching his videos. We did learn a lot from his session at the Dallas museum of Arts. I have to thank the TVI Ms.Cynthia Carter for inviting us for the events.
John was so glad that we as parents are getting Sripathi involved in the world of painting at a young age. He was so happy that he gave us his card and told us to call him anytime we need further assistance. Here we are almost equipped to continue Art therapy for Sripathi.

3. We got to meet the two gorgeous guide dogs Aurora and Echo. Both of them help Karin and John.

Truly amazing experience! I cannot thank them enough.

one day left to live series - 22 months and 21 days

As the Dallas weather starts to cool down from 3 digit degrees to 2, we headed to the Dallas Arboretum on Garland Road last Saturday. It was such a pleasant day and such a peaceful sight to see all around. I wanted to put Sripathi on the lawn and have him feel the grass, but it was too wet, so yeah maybe some other when we decide to stay longer for the grass to feel dry.

The architecture at the women's garden was simply serene with the white Rock Lake in the background. Beside the DeGolyer house we stopped by to listen to an artist play on the piano while Sripathi had a quick snack. Although I don't have pictures to share, Sripathi was happy to express his image of the arboretum using finger painting. Well he didn't do it on his own I borrowed his fingers to complete this piece. Consider it was part of his Art Therapy project.


Sripathi will be attending an Art Therapy session soon at the Dallas Museum of Art.
And recently I came across a Blind Artist John Bramblitt. So we have a lot of inspiring people for Sripathi to meet in the future.

one day left to live series - 20 months and 22 days

Acceptance!
It is said acceptance is the wise thing to do. There is also a famous serenity prayer.
God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

It's over 20 months now. In less than 4 months Sripathi will be two. Well if i want to be celebrating his second birthday i have less than 4 months to accept a lot of things and to 'keep calm and carry on'. In less than four months i have to accept that Sripathi may never be able to sit, may never be able to walk and probably may never be able to talk.

Accepting a special child gets to be okay until i see a neighbor's child running around and playing. Sometimes i think if God has punished me for some grave sin i committed in this life or past. But then again how could a God be so cruel by depriving a child of his childhood as a way to punishment? That is not the kind of God i want to pray to and depend on. God is supposed to be compassionate, to love all beyond all faults. I guess things just happen, well bad things just happen and i still want to believe that God is still on my side.

I remember this great article published on the 'Complex child' by Susan Agrawal Acceptance is a Rollercoaster. i need to revise this for sure!

Life is not about waiting for the storms to pass but learning to dance in the rain!

one day left to live series - 19 months and 22 days

We are now familiar with the Las Colinas medical center. Well Sripathi developed couple of prominent abscess on his legs last week. Usually we try Mupirocin and they help heal, but this time around they got worst and sadly our pediatrician was not available on Saturday and so we ended up in the Emergency Room. Yes our second home.

Lucky for us the physicians assistant only prescribed antibiotic and sent us home. So Sripathi is on Septra for the next 7 days.

In spite of all this, prior to visiting the ER we took Sripathi to a sensory play area, though not in the intention to have him look and feel the place, but for us to get an idea to improve the sensory play area that we are planning to build in house. This was a fun place for all special needs children. I'm sure parents can find such places where they live. Here in Texas, I found out about these facilities through a website called connectionskids.com

one day left to live series - 19 months and 18 days

So we had been to the zoo just once more for an hour! Just to visit the Elephants and Giraffes.








In the meantime Sripathi's blood work results arrived and his zonogrem level was at 15.9 which meant that we still had provision to go up on his meds if necessary. I mentioned to the nurse that Sripathi still gets spams at least once a day. So she discussed with Dr.W. So now Sripathi is on 3 zonogrem capsules every night. That's apart from Keppra. And his spams, though they do occur often, they are not too severe or last too long.
Fingers crossed!


Finally we are talking about Vision Therapy!!!
I had called the school district last week trying to inquire as to when Sripahti's vision services would begin and they told me that ECI had not yet sent his records and that is why the delay.

So the vision therapist from the school came home to asses Sripathi on 14th of June 2011. I was really impressed and content to know that Ms.Carter was aware of CVI and also Dr.Roman's book.

The first thing she suggested was to have a little sensory play area/room for Sripathi with as many sensory, textured, colorful and musical and lighting up toys in and around so that he tends to look and feel them. Initially or rather depending on the child's ability it would be accidental. But sooner or later his senses would be stimulated by the look and feel of his surroundings.

My Hadley instructor Ms.Worman had sent me a link from the wonder baby website; here you can find the instructions to build a PVC sensory area.
http://www.wonderbaby.org/articles/make-your-own-sensory-play-area
Which is cool, but sadly I feel I'm not so capable of following instructions to the dot and that too engineering such a delicate and detailed structure.

First I wanted to try to make a temporary place like a sensory area for Sripathi and have an idea to design something that is stable and suitable for long term.
We had this small table at home which I used as the main play area, then I just started celo-taping stuff and toys and chains and what not to hang form under the table. Then I placed a mirror on one side and surrounded the remaining sides with cushions and toys.

So have a look at Sripathi in is his adapted sensory play area.



Anyways I came up with a better idea of building a sensory area from what I found on Amazon and I discussed these with Ms.Carter today and she was very impressed with the idea.
Here are the stuff I'm planning to use from Amazon

http://www.amazon.com/gp/product/B000G1YW98/ref=ox_sc_sfl_title_9?ie=UTF8&m=ATVPDKIKX0DER
http://www.amazon.com/gp/product/B000KKB2OS/ref=ox_sc_sfl_title_10?ie=UTF8&m=A2UDNPGKURPVSY
http://www.amazon.com/gp/product/B00006RSWT/ref=ox_sc_sfl_title_1?ie=UTF8&m=ATVPDKIKX0DER

Additionally I’m going to buy few pieces of wood to build a frame and nail down the mosquito net on to the wooden frame. Then I'll use sticky back Velcro’s to fix the net frame to the upper part of play yard like a ceiling. That way I can tie things to the net and let them hang around.

Well all this idea and stuff seem great, but I hope I'm some were close to making an efficient play are for Sripathi. I guess I have to trust that well begun is half done!

Meowboy

to the tune of spiderman spiderman friendly neighborhood spiderman

Meowboy Meowboy
rolling on the floor Meowboy

whiskers wide
with "mai" (castor eye mai) applied
Meowboy in disguise

Look down
there rolls the Meowboy.

one day left to live series - 19 months and 5 days

Its June, its hot and we are having fun with Sripathi

one day left to live series - 18 months and 27 days

All is well!

So finally a week ago we had ECI come in for the first round of talks and evaluations.
It was really nice to meet and talk to them in person.
We are hoping that therapies will start as soon as possible. To top it, I hope the evaluations are completed in the next week or so and I should get copies too.
As I’ll require copies of the evaluation to start private sessions.

In the meantime we had been to the Dallas zoo; it was a nice place we went there before the crowd could come in so we enjoyed a nice long quite walk. Well I guess even Sripathi liked it.

Then two weeks ago we had been to Houston Nanmadwaar.
It was a blessing to sing and dance forgetting all the troubles.

And I'm enjoying these routine less days with Sripathi or Srimathi ???
Here he is dressed up in a nice pink frock like a girl.

one day left to live series - 17 months and 18 days

Finally we've embarked on the Ayurveda treatment for Sripathi. After consultation with physician Dr.M from CNS ayurveda we are proceeding with a six month treatment with Kashyam, tailam for the body and scalp, churnam and pills. Well without hope all this would be a mere drill. So all I'm hoping for is his treatment though very slow should help develop his body tone.

Now that Sripathi has started having infantile spasms we need to talk to the physician if he would want to make any changes to the prescription or not.

As per the neurologist from TCH, the results from the last EEG show no major abnormalities as compared to the previous EEG, there just seem to be more spikes which could be causing his newer type of seizures. Yes we've also started with the nightly zonisamide, hope this will help control his spasms.

one day left to live series - 17 months and 16 days

So here were are in Dallas, Texas.
Basically I'm not impressed about the move, for Texas is big, old and rude.

First I have to give my thanks to Hema ji and family for sharing their home with us for a week. I know that's a really long period to host guests at one's home. Finally we moved into our apartment with the bare necessities on the 5th of April. It's been over 2 weeks now since we shipped our stuff and they are yet to arrive. In the meantime Sripathi had to be taken to Houston for a scheduled appointment with Dr.W at TCH. This time around Mr.A could not make it since it was the first week at work and he cannot afford to take leaves.

I and Sripathi took a 45 minute flight to Houston. This was my first experience of the rudest Texan. Sripathi actually pooped in the flight. And the lady sitting beside me wanted me to get his diaper changed 'immediately' as she could not bear the smell. And the flight was so turbulent that the seat belt sign was on the whole trip. And somehow I managed to go into that small restroom in the front of the plane and laid Sripathi on my lap imagine trying to lay across a 84 cm baby in a small flight restroom. Anyways the terrible diaper change was performed while Sripathi was wailing.

As if that was not enough, the lady beside was so upset that Sripathi a 17 month old baby is not wearing pants or shorts to cover his diaper area. Well I could not answer her and I could not take all this rudeness, so I just sat there crying and hugging a really tired baby who was wailing so hard and finally went to sleep.

The silver lining here was when I was waiting for my stroller, one of the passengers came up to me and Sripathi, caressed him and wished me.

Houston was nothing short for its snobbishness. People I knew were not as welcoming as they used to be. The Doctor gave me further bad news. Well Dr.W is still the best person out there with Sripathi's welfare in mind. Basically Sripathi has been acting strangely in the past 3 weeks. When I explained about his activity similar to a seizure occurring around the 20th minutes since he takes a nap or goes to sleep. Dr.W explained that such episodes were Infantile Spasm.
Usually most drugs do not control infantile spasms well. But he has prescribed one that he feels is comparatively less with regards to side effects. And he made sure we get an EEG performed for Sripathi that very day.

Here was yet another Texan. She was a very nice technician. She had to do her job well. And she really did only that she was so irritable. She felt I was not cooperative is making sure my child is restrained within my arms while all the electrodes are stuck on head. Well I'm not sure how many parents are trained to restrain their children, very very physically. She was trying to stick them well with so many tapes and sometimes the tapes don't easily cut off and she got irritated with that. Well I was glad all this pain was over in less than 3 hours.

It was the most tiring 3 hours I guess. I and Sripathi slept for like 3 hours after we reached our friend's home.

Well then the next day, I thought I have just a few hours to get back home but then I met another friend, who felt she had all the time, grace and blessing in the whole wide world and was trying to give me a piece of her mind. Well I did not say a word just sat there listening to her saying that my son is born to get rid of all his accumulated Karma and that it is my duty and responsibility to take care of him. It seems God knows what to give to whom. Well I don't know what was going on in her mind. But all this left me so bitter. I was just waiting to get to my flight and fly away home.

So finally I was hoping I don't get to meet any more rude Texan. But sadly I had to talk to the agent at the Gate at the airport because I had to get a tag for the baby stroller. Also I wanted to request for a pre-board so I'm able to settle with Sripathi before all the passengers board.
But I was told that families cannot go for pre-boarding. So I said ok. And was waiting for the tag. The agent walks closer to the stroller and asks for the ticket, then she asks for other papers for the ticketing. I gave her my online ticket and also Sripathi's birth certificate.

While she reads his birth certificate she mentions that my son is big for 17 months. Well I had to say something or otherwise it was seem like I'm forging his birth certificate just to get him in as a lap child and not pay for a ticket. So I tell her that he has a medical condition. But believe me in that situation and after all that I've been going through, tears rolled down my eyes to hear someone say something like that about my son. So now the agent felt that she made a mistake my saying something about a sick child. Now she gets back to me with a pre-boarding pass and also a $100.00 voucher to use in my next flight. She then tells me that though he is a big boy, he is precious.

Well my first impressions don't seem to change.

VIP Art Auction has begun

Sripathi and several other special needs children have generously contributed their artworks for the Lighthouse Central Florida VIP Art Auction.
The Auction begins on the 15th of March 2011. All proceeds from this auction go to support the Early Intervention program at Lighthouse Central Florida.

Please visit http://vipfamilieslcf.weebly.com/index.html to have a look at the special masters and their special masterpieces.

one day left to live series - 16 months and 12 days

We are in the middle of late winter. The days are cold. But it is colder and sadder for me and people around me. I’ll come back to the reason.

Meanwhile tracking Sripathi’s Oral motor therapy, it has been going on just fine. I’ve been learning new exercises with regards to moving his jaws and cheek muscles. The therapist Ms.V suggested getting organic gummy bears (I found these sweet surf product online) She wrapped them in polyester organza fabric and makes him chew on it. Although he seems to work out at the therapists place and sort of fools me back at home. I got to learn to do it in a better way. Lately she has asked me to start phonics.

22^nd February Sripathi restarted occupational therapy with Ms.S. She taught us about the brushing technique, something that Ms. Peg also told me and showed me how to do. Next was the joint compression. Compression was something that Ms. Peg has been doing with Sripathi since the beginning. But I guess joint compression would also help enhance his motor skills.

Finally we had to discuss about the ketogenic diet as per Dr.K’s suggestion. So on 23^rd we went to Arnold Palmer to meet the clinical dietician to discuss Sripathi's conditions. Though I thought converting a pure vegetarian diet into ketogenic diet was going to be tough the dietician said its easier and that perhaps a vegan would be a big tougher. So anyways nothing is going to get started until we discuss it with Dr.W at TCH. At least we know there is yet another option to control Sripathi’s seizures. But of course it again is not a totally guaranteed method as it may or may not work for each individual. And if it does work for Sripathi we got to stay on the diet for I think 3 years.

That same evening Sripathi’s wheel chair arrived. It does not look as depressing as I imagined. Its looks more like a sophisticated stroller. Sripathi is all game for it. He loved to sit on it for lunch, snack and dinner. Oh yes I do feed him breakfast and that he has when he is hooked up on the standing frame. It a little uneasy to put him on the standing frame and watch him all hooked up and strapped all around. But well if it is going to help him we are both game for it! But until I get over my uneasiness completely and learn to appreciate the use of all these equipments I would not be able to share happy pictures :(

At the end of February and that too at the dawn of my 30^th birthday Sripathi woke me up with a 10 sec seizure. It was mostly due to congestion. But sadly it seemed to reoccur at midday. Things seem to get out of hands when he seized again at 4:22 pm for a terrible 1 minute and 30 seconds. So we called the neurologists office in Houston and left a message for the nurse. And she promptly called me the next morning and suggested to add an extra dose of keppra at midday for a couple of days. And definitely it helped. He is doing fine. Touch wood!

The next day since Sripathi felt better, we took him to the temple for a quick darshan of Lord Siva on Shivarathri on the 2^nd of March.

On 3^rd Sripathi submitted his precious artwork for the VIP families’ auction organized by Lighthouse of Central Florida. Ms. Susan took a nice snap of Sripathi to post on the artists webpage. All the paintings are so beautiful. It is amazing how all the children created such soulful masterpieces. And the pictures of the artists are so darn cute.

A milestone in Sripathi’s medication! On the 4^th of March he bid good-bye to Phenobarbital.

Since Sripathi spends a lot of time on the Standing frame he required sturdy shoes. We could find wide shoes that would fit over his braces only at stride rite. They were very expensive but Sripathi definitely needed a pair.

Coming to the cold and sad news. We are moving to Dallas, Texas. It is for my husband’s job. It is such sad to news to my therapist. I cannot imagine how much I’m going miss them. We would eventually find therapists at Dallas. But definitely Sripathi’s first therapists Ms.Peg and Ms.Susan have been like family to us. I wish I could take them with me to Dallas! Oh boy I already miss them, as we have like just 2 more weeks with them here in Orlando.

VIP Art Auction

Sripathi and several other special needs children have generously contributed their artworks for the Lighthouse Central Florida VIP Art Auction.
The Auction begins on the 15th of March 2011. All proceeds from this auction go to support the Early Intervention program at Lighthouse Central Florida.

Please visit http://vipfamilieslcf.weebly.com/index.html to have a look at the special masters and their special masterpieces.

One tight slap to my ever troubled mind.

Śrīmad Bhāgavatam 5.11.16

na yāvad etan mana ātma-lińgaḿ

saḿsāra-tāpāvapanaḿ janasya

yac choka-mohāmaya-rāga-lobha-

vairānubandhaḿ mamatāḿ vidhatte

The soul's designation, the mind, is the cause of all tribulations in the material world. As long as this fact is unknown to the conditioned living entity, he has to accept the miserable condition of the material body and wander within this universe in different positions. Because the mind is affected by disease, lamentation, illusion, attachment, greed and enmity, it creates bondage and a false sense of intimacy within this material world.

one day left to live series - 15 months and 25 days

testing times...

Seizures started on Sunday the 6th of February and recurred for three days.
In the meantime he was evaluated for Occupational therapy and Oral motor therapy.
He is also registered for ketogenic diet discussion.

On 11th Sripathi's Oral motor evaluation was performed. He failed miserably in most of the assessment. While I learned that my child is trying very hard to even suck a bottle. It just goes to show that his hypotonia is eating him alive. At least we can do something about it now. They have taught us two different therapies to perform at home. This is just the beginning. We have a long way to go.

To have fate slap us harder we've got the standing frame from Shriners. Sure I know it has to be used to help him but still is hard to take. Well this would be far better until fate slaps us flat to the ground once Sripathi's wheelchair arrives. Where do I have the time to feel depressed?

And to top it all on 12th of February he started crying and wailing for over an hour and a half we thought something was wrong with one of his testicles as they seemed to move and bulge every time he wailed louder. So we took him to his pediatrician who tested him with nose swab and oral swab which came back negative. Not sure what was wrong she suggested we take him to the hospital emergency department and get a ultrasound to make sure there are no problems with the intestine or testicle.

Dr.J at Florida hospital checked him and negated the testicle torsion issue but still they was thinking only other option would be an intestine problem so she suggested getting an X-Ray as well as the ultrasound. BTW all this while from 9:30 am up until 4:00 pm he was crying and wailing.

Of course the tests came back negative. But surprisingly Sripathi slept between 4:00 pm and 6:00 pm in the hospital. Dr.J also could not suggest us anything. But she was happy that Sripathi was resting. So the issue was closed as a false alarm.

A false alarm

His head is big but beautiful,
beautiful in every sense
for even a lame puppy is pretty at a glance.

His brown eyes seem to say something,
something from the past, something that has happened
sadly the harder I try the lesser I understand.

His flaccid arms can do much,
much more than lay by his side
for when they do you'll know he tried.

We are treading a tunnel,
tunnel with more fear and less foresight
where is the end? where is the light?

Satsang discourse on Meera Bahi

So last Sunday was a discourse on Meera Bhai.
Meenakshi ji beautifully expounded the life of Meera based on the Bhakta Meera book translated by Sr.Bhagya ji from Guruji's discourses.

Here is a snippet of the discourse.

one day left to live series - 15 months and 5 days

Thank you all for those lovely comments on Sripathi's Haircut. He sure feel lot relieved with less hair on his head. And yes he is obviously a perfect photocopy of Aravind.

So we got Sripathi's report form the neurologist stating that his EEG still looks poorly organized (immature) for age but at least it is stable.
On the 27th Miss Susan started employing computer animated vision therapy with Sripathi. He was not totally keen on looking but there were certain times when he did pay a little attention. We have a long way to go and she would continue this every week.
Then on the 28th on January he got his vaccination against chickenpox.
He is doing fine. Just running some rashes, which i think are more seasonal than due to any specific problem.

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.