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 - 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.