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 - 11 months and 3 days

Thank God for a happy baby at last. After over 3 days of constipation and of course followed by cluster of seizures almost 7 in a day! We informed about his condition to the pediatrician and neurologist.
They discussed with each other and the pediatrician later discussed Sripathi's case with a gastroenterologist. Then they prescribed Lactulose 5 ml twice a day. Then after a day Sripathi finally had a bowel movement. Now he is on 7.5 ml twice a day.
But since his seizure was not a welcome sign the neurologist suggested to hold on the wean off process on the phenobarbital. And on top of it the keppra was increased to 5 ml twice a day.
I'm grateful to the pediatrician who takes so much care every time she examines Sripathi or prescribes medication or administers vaccinations.

one day left to live series - 8 months and 24 days

The Good, Bad and Ugly of this week

The Good, Sripathi is eagerly learning to lift his head up!!!
It is really a big deal that is attempting to lift up an almost 6 pound head. I'm so proud of him. Its not a one time effort. He is frequently trying it everyday now for the past 3 or four days. I showed a photograph of Sripathi with his head held up to Miss. Peg and she was so amazed. She said he is taking a lot of effort to do what he is doing. And when Miss. Susan was showing him the light box, he almost touched the pinwheel and then turned over and lifted his head up and she was so happy to see him do that. So this is more than just The Good part.

The Bad, no OT yet. The one place we were supposed to take him for evaluation on Monday was a not so great place. That's what Miss.Peg felt "if we are having to travel 13 miles every week for his therapy it better be worth it". So now we've found another OT location a little closer to where we live, but we are yet to get an appointment with them. So hoping it works out soon. And both Miss.Peg, Sripathi's physical therapist and Miss.Susan, vision therapist have good opinions of this new place. So The Bad part is no longer bad.

The Ugly, Sripathi was fine all this while but once he started rolling over and trying to lift his head, because of the weight he sort of drops his head down with a thud. On top of it I had put bracelets on his hands so he kind of hit his head on the bracelets as well. And now he is bruised his head, cheek and wrist. It started out as red spots and by that night it started to swell. The next day he continued to roll and lift and drop his head and these bruises got worst. So we got an appointment with his pediatrician. When we went in to see her we also noticed that his wrist and fingers on the left hand were swollen. So after examining all the bruises Dr.C was also not sure if it was all because of a bracelet. She doubts it could be some insect bite. So she has now prescribed an antibiotic Keflex 4cc thrice a day and topical cream Mupirocin. So hoping this will cure his bruises and most importantly NOT retard him of his head lifting ability. So waiting for The Ugly part get prettier soon.

one day left to live series - 7 months and 6 days

A Drama day!
It was around 4 in the evening, I was feeding Sripathi Alimentum. There was a call and it was his pediatrician. She said the results of the anemic test was out and that Sripathi's hemoglobin levels were dangerously low. She asked me how he is doing and whether he was bleeding? But to me he looked fine. No issues no blood. So then she said that she had already discussed his situation with a hematologist at Florida hospital and that they would be contacting us as soon as possible. Then she mentioned something that made my heart drop. She said the hematologist is suggesting to run further tests on him at the hospital and possibly he might have a blood transfusion. I asked her for more details as in the numbers that refer to his low hemo. It was 5.5 and the normal range is between 11 and 14. They were also concerned about his seizures. So she said that after they run the tests they would contact the doctors at Texas children's hospital to discuss and decide on the blood transfusion.

I called Aravind and told him what i heard, he said he would come home immediately. I had actually recorded what the ped had spoken so I called my good old friend Dr.Lekshmi ji at Houston and asked if she had time to talk. As always she is a gem and gave me time. I played the recording with all the technical details. I just want to hear from her that things are okay and its fine to go ahead with a transfusion. And yes that's what she said and she seemed concerned about why he became anemic. She said giving Sripathi a unit of blood is fine and would cause no harm rather it would make him feel better but its highly important to find the reasons for anemia.

Within an hour we received a call from the Florida hospital and they said that Sripathi needs to be admitted today, but before that we need to bring him into the ER soon. So after giving Sripathi his regular seizure medication, we left after an hour just to make sure we don't get stuck in the evening traffic. In the ER they asked us the background, they drew some blood from him, the resident doctor Dr.Jan, checked him and she also said he looks fine. Yes the doctor was Indian like us. She got the complete picture of Sripathi's medical history and then said that she would contact Dr.H from hematology with the results and see where they want to head from there. Shortly the nurse and doctor were back to draw more blood :(

I'm not going to mention anything about Sripathi's reaction here, its obvious he was terrified. Now within 2 hours of coming into the ER and having the blood work done Dr.Jan told us that we may not be required to stay in the hospital . yeee! Looks like the obvious reason for his low hemo was because of very low iron. So she said that he will have to take supplemental ferrous sulphate daily. Well actually it takes 2 to 3 months for the bone marrow to absorb the supplements so in the mean time the hematologist will see Sripathi the very next day in his office. So the blessed child had his first dose of ferrous sulphate at the hospital, saving himself from blood transfusion.

Today by 10.30 am Sripathi had his seizure medication, nursed then had his second dose of Iron supplement and was sleeping in my arms in the hematologist's office. So here we were explaining the complete history to Dr.H one of the best hematologists. He said that he wants me to check my blood work and in the meantime i need to take Iron supplements too. He said that since for now it is obvious that its because of iron deficiency that Sripaathi's hemo levels are low, he wants to continue the iron for a couple more days and check back on him. So we'll be meeting him on Tuesday again, when they'll check if Sripathi is able to absorb the supplement. Only if they see any hitch in that would he recommend any further tests related to bone marrow, or his genetic issue or epilepsy or even consider the blood transfusion. Because even given the very low levels Sripathi is physically showing no signs of distress.

So we are now home with our blessed baby and perfectly sure everything is fine.

one day left to live series - 7 months and 5 days

Sripathi was supposed to get his HIB yesterday. But when the ped checked him she felt that he was pale. She said they'll get his blood work to ensure he is not anemic and then give him his shot on Monday.

We gave him formula milk yesterday, as he has allergy with normal formula we gave him Alimentum. As a first time i gave him just 1 oz. Hope he does not have any issues with this formula.
Sriparhi's therapist Miss.Peg will be on vacation. I hope by the time she returns Sripathi will be able to do tummy time without much fuss. It breaks our heart to hear him wail when placed on his tummy on a boppy. But we have to do it more often just to help him get control over his head and shoulders. Wish there is a easier way for him to learn this.

one day left to live series - 6 months and 11 days

The pediatrician visit is not until tomorrow. Actually Sripathi will be getting his vaccination shot. He's been having seizures since he was 2 months old. So the neurologist had initially suggested that we stop vaccinations as that could trigger further seizures. Now that he is on medication we have been advised to restart his vaccination low and slow, like one vaccination per week and to proceed with the next shot only if he was alright.
So i just gave him 1.2 ml of Tylenol after confirming the same with a best friend/best doctor Lekshmi ji. The tylenol is to make sure he does not get a fever, as fever can trigger seizures.


Even after having the tylenol he had a hard time going to sleep. He did take short naps in the morning and afternoon, but i felt that was not enough. Moreover i had to rock him all along.
I'm trying to find some kind of sleep therapy, but nobody i know really knows anything about a sleep therapy.


Anyway today we went to costco to get Sripathi's passport size photographs taken.
BTW he already has his passport, since we are basically from India, we now need to apply for an Indian visa for Sripathi.



"Take nothing for granted in a second it can all be gone"