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.

The Three Questions

This is based on the short story by Leo Tolstoy - The three questions.
The story goes like this.... (Credits - Wikipedia)

A king determines that he will be able to cope with any occurrence only if he has the answers to three critical questions:

• What is the best time to do each thing?
• Who are the most important people to work with?
• What is the most important thing to do at all times?

Many educated men attempted to answer the king's questions, but they all came up with different answers. The king decided that he needed to ask a wise hermit in a nearby village. The hermit would only see common folk, however, so the king disguised himself as a peasant and left his guards behind to see the hermit. The hermit was digging flower beds when the king arrived. The king asked his questions, but the hermit went on digging rather laboriously. The king offered to dig for him for a while. After digging for some time, the king again asked his questions. Before the hermit could answer, a man emerged from the woods. He was bleeding from a terrible stomach wound. The king tended to him, and they stayed the night in the hermit's hut. By the next day the wounded man was doing better, but was incredulous at the help he had received. The man confessed that he knew who the king was, and that the king had executed his brother and seized his property. He had come to kill the king, but the guards wounded him in the stomach. The man pledged allegiance to the king, and he went on his way. The king asked the hermit again for his answers, and the hermit responded that he had just had his questions answered.

• The most important time is now. The present is the only time over which we have power.
• The most important person is whoever you are with.
• The most important thing is to do good to the person you are with.

Here is a person who has answered his three questions.
Narayanan Krishnan personally cooks and feeds 400 mentally ill destitute every single day since 2003 and he is selected as a candidate for the CNN hero of 2010.
Voting is open until Thursday, November 18, 2010 (6 am ET) on http://heroes.cnn.com/vote.aspx.

one day left to live series - 11 months and 27 days

We recently found about water therapy for babies with hypotonia and developmental delays. So I checked with Sripathi's physical therapist if we can try water therapy for him. She was very supportive about the therapy and we immediately bought the equipment from Water Way Babies with kind assistance from Nancy.

This morning when Ms. Peg arrived, I told her that i had filled the tub and its ready for Sripathi's therapy. She was all excited and helped me put the ring around his neck and lower him into the tub. He obviously looked perplexed his eyes widened and he started crying but as we started singing all the rhymes that we used to sing for him during PT, slowly he calmed down to the song but was still very scared. But Peg helped him move his feet and then he was fine. He kept moving his feet, started feeling the sides of the tub and then I started moving him hands. He could reach the floor of the tub and was able to stand with one foot. I can't say he likes it, but I'm guessing he will be okay after a couple more sessions in the water.

I'm so grateful to Peg for helping me with the therapy. Its really hard for just one person to handle a baby in water. Well eventually I'll learn to do it alone but its just safe to have one more person around.

That's with water therapy. And about Anat Baniel method its way too expensive for us to visit Anat herself for therapy. So I hope we could at least make it to Gainesville again but for a longer session than before.

Bye Bye Paati

Sripathi's grandma is returning to India.
He will miss her games and I'll miss her help in the kitchen.
But I'm also glad she is going back to India where she can resume all her usual activities, none of which she could do here in the US.

Bye Bye Paati

(And Hema ji thanks for the info, I'm trying everything everyday, now he is getting closer, but still poops like a goat :)

Golu 2010

Navrathri 2010 - Season for the doll fesival of south India. Last Sunday we had a navarathri satsang with golu.

24 Puratasi 2010

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

Consistency is not Sripathi's game. A visit to the gastroenterologist resulted in increased of lactulose from 7.5 ml to 10 ml twice a day. Added to it Dr.B strongly recommended giving Sripathi an overload of fluids. So we came back to try anything and everything to help Sripathi poop.

Some of the things we tried abundant fluids like apple juice, orange juice, prune juice, pear juice. Apart from fluids some of grandma’s therapies like juice of dry grapes soaked the previous day, boiled and cooled water of caraway seeds, boiled mashed corn, some tea.

Somehow finally he did start pooping regularly for the past 3 days. But sadly we are unable to determine what helps him and he is still on medication as well. Basically he is just not consistent with one method of relief so we just have to keep doing every method we know on a frequent interval.

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 - 10 months and 22 days

We are back and Sripathi is doing fine but not his dad. Aravind developed a fever the day we landed in Orlando. He is now on antibiotics and is recovering fast.

On the day we landed in Houston we visited a prayer hall. People were singing, playing the cymbals and drums sort of instruments. It must have been a little too loud for Sripathi because he immediately had a seizure but a short one.

On the 15th he had to fast nearly 4 hours to be sedated and taken for a Spinal tap or lumbar puncture. Later during the day he had to give blood tests. As usual the nurses were fighting hard and finally drew blood for 2 tests and after nearly an hour of struggle they called the doctor to check if the third test was necessary because they just could not find a vein to draw blood. After sometime the doctor returned the call stating that they would not require the third test.

After a long Wednesday he had a break on 16th and met his ophthalmologist on Friday afternoon. She was impressed with his improvements and told us to return after 6 months and mentioned that she might consider glasses for Sripathi if he is still far sighted. And as far as playing one eyed jack she said we need not worry about it but make sure he does not press or pry into his eyes.

Later we went to visit his neurologist who was also impressed with the way Sripathi was trying to roll and lift his head. He said all the tests so far the spinal tap and the 2 blood tests came back negative. He also said that it is happy to know that the tests are turning negative but at the same time we have to understand that we are not finding any answers.
He then explained how to wean him off the phenobarbital in 9 weeks as Keppra alone would be sufficient for now and if necessary he would go up on the Keppra.

Dr.W told us that seizures triggered by some kind of physical discomfort like constipation, congestion or like the other day which was caused by loud noise is not as critical as compared to seizures that are provoked without any reason. And such seizures would not cause much harm, but as much as possible we need to recognize Sripathi's discomforts and avoid such situations of lowering his seizure threshold.

He checked Sripathi physically and when he measured his head circumference he drew the graph and compared it with our last record which was 3 months back and said there is a 3 centimeter increase. He was quiet concerned at Sripathi's large head. He said it has to stop growing at this rate.

Our other concerns were with his motivation to use his hands. Apart from touching his toes and playing one eyed jack he doesn't seem to use them. Dr.W attributed this to his hypotonia and affirmed that this too would improve with time and therapy if not completely cured.
I had found about Anat Baniel method of movement therapy for special needs children like Sripathi. So I mentioned about this therapy to the doctor, he said it should be fine to engage him with this kind of therapy. Dr.W also asked us to return after 6 months if everything goes well. So I'll now try to fix up an appointment with the therapist in Gainesville. Hoping that we can drive Sripathi to the therapist on one of these Friday's.

Overall the feedbacks from both the doctors were good. So much for not having any hopes because I had absolutely nothing in my mind and was not anticipating anything.

one day left to live series - 10 months and 13 day

Thank you for all the kind comments on Sripathi's biggest milestone.
(Happy Ganesh Chaturti celebrations with virtual kozhukkatai.
And belated Janmastami wishes with virtual chedai.)

We are heading to Houston this Tuesday for his scheduled visit with the neurologist, neuro ophthalmologist and day long genetic tests at Texas Childrens hospital.

In the meantime his vision has greatly improved after Ms.Susan's arrival as his vision therapist. His occupational therapy is progressing moderately as he cooperates for at least 20 minutes with Ms.Julie but sadly even after 4 months of physical therapy he gets dislikes the PT sessions totally. Sripathi does several of the exercises during the day in bits but somehow does not want to do certain moves. If we continue performing tummy time on a boppy with his elbows tucked he would start wailing non-stop and simply exhaust himself crying and eventually fall asleep.

Guess its for his own fun Sripathi is playing this one-eyed jack for a couple of weeks now!

one day left to live series - 10 months and 1 day

Our Story - part IV

Shortly after his first admission at the hospital and starting on his new medication of Phenobarbital 4.5 ml twice a day, Sripathi had another seizure that lasted over 7 minutes and eventually re-hospitalized on the 10th of January.

This time he underwent EEG monitoring for 38 hours. During which time we were asked to press a button that was attached to the monitors if we see him seize. And the second evening while I was feeding him expressed milk I noticed he was shifting his focus to his right, doubtful I called Aravind to check and we hesitantly pressed the button. The next day the doctor called us into the EEG monitoring room to show us the EEG reading and the video and explained to us that Sripathi did have a seizure the previous evening. And that throughout the 38 hours of EEG he seized only once. She told us that we'll have to bring him back to the hospital if his seizures last over 5 minutes. Finally we were discharged on the 13th of January 2010 with an additional prescription of Topomax 25 mg. The neurologist suggested we get his eye checked by an ophthalmologist and gave us her reference.

So we though our nightmares were over. Sripathi had a hard time with the medications but at least he was not seizing any more. On the 23rd of January he suddenly was running temperature and it was 101.7. We were getting ready to give him Tylenol or acetaminophen but prior to that we wanted to confirm with the on call nurse as the fever was really high. And bad news she asked us to take him to the ER rather than we administer any medicine as the fever is very high. So we go into ER and they gave him acetaminophen and also took his urine samples. They were trying to make sure he did not have any seizures. And then after 4 hours we left and by the next day his fever was gone.

Eventually we did take him to the Ophthalmologist on the 11th of February. Not sure if it was all the dilation and extra lights or just his gradual increase in weight that he had 2 seizures since we returned from the eye exam that day. So we called our neurologist who insisted that she sees him right away. She asked us to give him a bolus shot of Phenobarbital 10 ml. And we drove 30 miles. At her office Sripathi seemed very normal. He did not seem like he just had seizure and on top of it he had extra dose of medication. Even Dr.K was surprised. But she prescribed to increase his Topomax to 37.5 mg that's 1 and a half tablet twice a day. And she wished that he does not seize anymore.

Well wishes don't always come true; he was hospitalized the same evening after a 13 minute seizure. This was his third hospitalization for seizures. By now all the nurses and doctors were overly familiar with us. It was the routine sever blood work, this time they got the special nurses who are generally caring for patients who are being air lifted for treatments. This was because they usually are very quick and efficient. Guess it was time for them to show their efficient by drawing several vials of blood from my sons neck. I took not be in that room for long. Sripathi was wailing and I was wailing with him. It was not helping him or the nurses. I had to leave the room. Aravind was with him. After what seemed like hours one of the nurses brought a frail little creature turned red and blue from crying. I nursed him and he was the least interested he just wanted to feel safe and painless for some time and eventually fell asleep.

We were discharged on the 13th of February with 2.5 ml of Phenobarbital, 37.5 mg of Topomax and a new member Keppra .8 ml. That was not all. He was supposed to get more blood work performed outside because they could not draw enough blood the other day. The list from the neurologist marked almost 11 or 13 different tests. We finally ended not doing any of those unnecessary and out dated tests for epilepsy except for 3.

Things were going on fine for a couple of days but on 17th of February he had a breakthrough seizure and it was so different from the rest he had before, it seemed like he will be out of the seizure but again his eyes used to get locked, we got a video of it and Aravind took it to the neurologist. Who on looking at the video felt that he was probably out of the seizure but to fired and seemed like he was still seizing. But again even she was puzzled. She anyways asked us to increase his Keppra to 1.6 ml. And to add to all the uncertainty that we were surviving she gave all the records pertaining to Sripathi and suggested that we take him to an Epilepsy center probably in Miami or Gainesville or any other that our Insurance could cover. She said that she was worried why Sripathi's seizures could not be controlled by three different medications and preferred that a specialist takes a look at him for a second opinion.

Our friends had contacted a specialist at Houston's Texas Children's hospital. Dr.W the epilepsy specialist was ready to take a look at Sripathi immediately and gave us an appointment with a week. In the meantime Sripathi had another seizure on the 21st of February.

On 26th we went to TCH, first Sripathi was scheduled for EEG and later in the day we met Dr.W who spent nearly 2 hours with us. First listening to all that has been happening since Sripathi's first seizure to the last one on the 21st. Then he spent sufficient time explaining to us about Sripathi's seizures. First he said his EEG was totally abnormal and he was surprised at how they missed to read his EEG properly back in Orlando. Then he said that his seizures were worse and critical. He called that cryptogenic localization-related epilepsy with (Tonic versive seizures) independent left and right hemisphere seizures. Other impressions he provided were that Sripathi has a developmental encephalopathy with global delays, prominent hypotonia, macrocephaly which suggests a neurometabolic disoeder.

He told us that Sripathi was on the wrong medications. First he wanted us to wean him off the Topomax as he said that the side effects of it were already showing up on the EEG. But he said that any change in medication needs to be gradual or otherwise it could have adverse effects on his seizures. So one change at a time. Regarding the seizures he explained that Sripathi was first be placed of antiepileptic medications to control his seizures and only if they don't seem to help at all we should go for the next treatment which usual is surgery. Unfortunately Sripathi is not a candidate for surgery for the mere reason that his seizures are originating from both the left and the right sides of his brain. So the next possible treatment would be a Ketogenic diet. Not all patients fair well with this diet which is unique to each patient. Lastly if this does not work out then we can try the Vagus nerve stimulator, which involves a surgery to place a chip in the patient’s body. But for now he sent us home with a plan to wean Sripathi off the Topomax. And for convenience sake make the Keppra 1.5 ml from 1.6 ml. He also suggested that we extend our stay at Houston and get Sripathi checked by a neuro ophthalmologist, get an MRI and a few more blood tests.

Our stay typically planned for 3 days was extended to 30 days. On the 2nd of March Sripathi was given his Polio shots and on the 5rd of March he had his MRI and the results stated that Sripathi's brain had abnormally increased subcortical and periventricular white matter volume with abnormal thickening of the corpus callosum. The following evening he had cluster of seizures and eventually taken into ER. Later discharged with prescription for Diastat.

On the 9th of March Sripathi was scheduled for an eye exam and further blood work for Alexander’s disease, Canavans, the amino acid plasma which all eventually came back negative except for the CMA - chromosomal micro array. From which they found that Sripathi has a PHF8 gene duplication on the X chromosome. So later they had taken my blood samples to test for the same. The gene that has duplicated for Sripathi has never happened to anybody before.
Sripathi had his eyes checked by a neuro ophthalmologist. And as per the specialist Dr.E his eyes are perfect, but not the neurological connectivity with the brain. So he was diagnosed with Cortical visual impairment - CVI and he will require visual therapy.

On the 11th of March Sripathi had his HIB vaccination and the next day he had a 12 minute seizure and we administered Diastat for the first time. We had informed Dr.W's nurse about Sripathi's seizure and that evening we were informed to increase his Keppra to 2.5 ml. Gradually on the 14th of March we had weaned him off Topomax which took us over 2 weeks.

On the 22nd he got his Prevnar vaccine and the following day he had several seizures and was given a diastat. When we informed about his recurring seizures after vaccines Dr.W confirmed that Sripathi still has more room for intake of Keppra and suggested that we increase his Keppra to 3 ml which we did on the 24th of March but he still continued to have a 7 minute seizure that day and we gave him a diastat. Well we had to wait because the Keppra can take time to increase in his blood to help counter the epilepsy.

On the 27th of March we finally left to Orlando. Sripathi seemed fine throughout the flight but sadly seized in the car on our way from the airport. We stopped on the Highway and gave him a diastat. He was fine for a couple of days and again seized on the 29th for like 4 minutes.

The story so far...after that things seemed to settle. But like the calm before the storm Sripathi had several breakthrough seizures from the 9th of April till the 14th. Sometimes 6 seizures in a day. But each seizure would not last more than 5 minutes so we did not have to use diastat most of the time. On the 12th Dr.W increased his Keppra to 3.5 ml. Finally the seizures were controlled after we gave him a bolus 3.5 ml of Keppra.

one day left to live series - 9 months and 24 days

New Lesson - constipation can trigger Sripathi's seizure. Real prolonged seizures, which required two 2.5 mg Diastats to be administered rectally in 5 minutes interval.

one day left to live series - 9 months and 6 days

It's not fair. Not a nice way to start the 9th month. Three days of terrible seizures. In fact Dr.C did not give him his Prevnar vaccine last Thursday because he was still on antibiotics. Yet he had cluster of seizures on Friday. We contacted the on call neurologist and the result an increased does of Keppra from 4 ml twice a day to 4.5 and the phenobarbital still at 2.5 ml twice.
Moreover we were asked to administer a bulsar 1.5 ml of keprra on Friday as well as Saturday because the seizures where quite frequent. Anyways on Sunday it seemed to slow down.
Whatever be the reason and explanation for all his seizures, it's not fair.

one day left to live series - 8 months and 29 days

Some nice things to write about.
Sripathi's rashes or bruises have somewhat become alright now. We are still on antibiotics for the next 5 days.

Finally we did get his OT evaluation performed on Monday. He will be seen by an occupational therapist every week. As per Miss. Julie, Sripathi's OT will for now overlap with his PT and Vision therapy. They've already asked me to work on 4 different exercises for him at home.

Yesterday we went to visit the hematologist. After a quick blood work Dr.H came back to inform us that Sripathi's hemo level was just about perfect at 11.9. So he said that we can wean him off the Iron supplements in one month. And we'll meet the hematologist again in 3 months, that will be close to Sripathi's first birthday.

Tomorrow is another big day, a visit to the pediatrician for his Polio vaccination. Hope he will be seizure free after the shot. Fingers crossed. We have to watch him closely over the weekend though.

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 - 8 months and 17 days

Sripathi is doing fine after the HIB vaccine on 6th of July 2010. No seizures. :)

In the meantime he developed diaper rashes four days back. I tried balmex but it didn't seem to help, then I read that breast milk can be applied to any skin problem for a baby. I had some milk stored in the freezer, so I tried applying that and it seems to have cleared up all the rash.

Miss.Susan was here today for his vision therapy and she was impressed by the way he was trying to look at some of his familiar toys. She has given us a new toy to be introduced to him every once in a while, just so he starts to recognize more variety.

The best part is he will be going for an occupational therapy examination on Monday. A therapist would evaluate and decide on how to improve his fine motor skills. We have to travel 13 miles to get his evaluation done. And eventually have to do this trip to the OT every week.

He is actively rolling all around the living room. He is so fond of rolling over that one day he had held up one end of his blanket and kept rolling that we finally found him in a bundle. ;)

one day left to live series - 8 months and 7 days

It was one of those days when the sun is shy
a day before the patriotic holiday, the 4th of July
and I sure liked the way the day went by.

Mom likes art, I never knew
until Dad took us to a museum, that was long due
and grandma came along too.

- written on behalf of Sripathi :)

Yes we had been to the Orlando Museum of Art last Saturday. I had been asking Aravind to visit an art museum for a long time. Eventually we forgot about it until I read that Bank of America cardholders can visit the museum for free. It's not that admissions are expensive but this advertisement just brought back my desire to visit a museum again. Moreover this was a nice place to take Sripathi, I thought. One it may not be very crowded and best of all it won't be noisy. So when we entered, it was like they already knew we were coming with a child. The featured artist was Mo Willems. No we have not heard about him before. But looking at his works it was more than obvious that he was a children's artist. He has published several books for children with art and story that's so charming to a child's ears. So I've now got new ideas for Sripathi's leisure.

Sripathi has learned this new thing, holding his feet. Looks like he is amused by this act, he just keeps doing this very often.

Ok now let's hear something about his vaccination. So we went to the pediatrician today and Sripathi got his second HIB vaccination shot. Fingers crossed, hoping he does not seize. BTW it's our 4th wedding anniversary today and so hoping harder that he does not seize today.

one day left to live series - 8 months

Yes almost 8 months and Sripathi is just about fine these days. A lot has happened over the past 10 days or so since I blogged. Thanks to all for all the kind words for my battered self.

Ok some good stuff, i finally got to go meet Geeta, Mohit and their little one Arjun at their new home. Its a lovely home with a warm swimming pool. Thanks to our dear husbands who let us go swimming for almost 45 minutes. I and Geeta were just talking about how life has changed so much. Ever since we came to the US they have been our very close friends. We kind of did so many things together grocery shopping, traveling, movies, lunch and diners. But now its a big deal even to go visit each other. I hope it will change, rather go back to those days again.

But here is the best part, Sripathi has learned to roll, though with much difficulty because his head control is lacking. He is still trying to roll but just pushing his heavy head over his arm and then coordinating his lower body in the same direction. I was just amazed. We can see its difficult but i'm so proud of him that he relentlessly kept trying and finally he has succeeded. Though he has to learn it better or rather to do it the right way, at least he is willing to try, to learn. That's what is more important for a child like him.

Here is a short video. But i hope hope hope that he does not have a severe seizure that will draw out all his energy and leave him struggling back at the start line.





Oh some not bad stuff, Miss.Susan came back last week to discuss Sripathi's assessment. She said he has a lot of scope for improvement with his CVI. But she has insisted that we start Occupational therapy. She says its very important for him. I mentioned this to Miss.Peg the physical therapist. She has also agreed to mention it to early intervention. But we've been told that early intervention would not immediately agree to provide for an OT. But we are hoping they consider Sripathi's case because he is unable to use his hands and until he does there will be minimal progress. As per the assessment, he has scored only 5 out of 60 on his fine motor skills. Though i know whatever is going to happen would happen for the good, i just want to keep hoping my best for get to convince early intervention to accept and look though his case.

There is yet another not so bad news, i had to submit my resignation last Thursday.

one day left to live series - 7 months and 20 days

Days of bad timings.

The excited trip to Houston was far more than just excited. We reached Houston at around 1:30 pm CT on the 16th of June and within 2 hours we were in Dr.Lekshmi's clinic for Sripathi's most dreaded vaccination shot, the DTaP. Miss.Ruby, Dr.Lekshmi's nurse gave him the shot and he did not feel a thing, so obviously he did not cry. That's Ms.Ruby's lucky hands, nobody feels the pain of shots. Sripathi did just well that evening and slept well that night. The next morning I gave him is seizure medications as usual and put him down for a nap and I stepped into the shower. Within minutes my I heard him almost scream and I just jumped out of the tub and at the same moment my mom carried and brought Sripathi to the bathroom, I held him and tried to calm him but he went crazy and I noticed he was seizing. So told my mom to call Aravind and he came and carried Sripathi while i tried to dry myself and get the Diastat. It was horrible the way he was screaming, so far he has never made a noise while seizing, this time was totally diferent and his seizure was also getting severe, he was shivering and trembling, probably looked like the tonic clonic seizures i've heard about. I gave him the diastat rectally and unfortunately he pooped. And we were not sure if we can administer another dose. And he didn't stop seizing for well over 10 minutes and he was screaming all the while. And slowly he stopped and fell aleep for over an hour on m lap. My bad: I shouldn't have left his side, should have woken up earlier and had my shower before he woke.




Ok thought that was it for the day, we were all tired and he was overly exhausted from that one seizure. But things were from bad to worst as the day progressed. Later that afternoon when he was sleeping and Aravind was by his side I went to have lunch and as i was half way through i heard the same loud scream and I rushed to find him seizing. So to stop him from shaking and seizing and screaming we gave him another diastat and after a while he stopped and went to sleep, I put him beside me on the bed and we slept for over 2 hours. Then all of a sudden he waked up screaming and seizing. This time around it lasted 4 minutes well 1 minute less than the diastat cut off. So we were hoping, hoping real hard that nothing severe happens during the night. And luckily he had just one 30 second seizure at around 11 and then he slept well.



Today we were getting ready to leave to Texas children's hospital and just minutes before we left he seized for less than 30 seconds. We then reached the hospital in less than 45 minutes and right when we put him on the stroller he seized, again for less than 30 seconds. by the way these were all laughing seizures, yes he kind of giggles when he seizes. Then the EEG lasted for over one and a half hour including all the setting up of electrodes and stuff. During which time he never seized. duh. I though if he did seize during the EEG then neuros could read more about his seizure activity. Anyways 45 minutes after the EEG he did seizure twice and each lasted for probably only 10 seconds. Then we had his bloodwork done for longchain fatty acids and pipecolic acid. oh I forgot to mention, the doctor from the Genetics department mentioned that we can ignore the PHF8 gene duplication for now, because they don't have much information nor research in that area and so they are continuing to do these acid tests probably to check on his inborn metabolic disorders.



After the bloodwork we had a quick lunch as the cafeteria on the 3rd floor right across the laboratry and headed to the 9th floor for the appointment with Dr.W. We were way to early but then again we did not want to drive back and forth. And the doctor was kind enough to see us early. And yes he did seize while we were waiting for the appointment. Phew after all the bad and worst things in succession which took me on a guilt trip, the doctor had something pleasing to say. He said that Sripathi's EEG though still certainly very abnormal because his brain is not working as it should. But the best part is the several series of spikes seen in his earlier EEG 3 months back have sort of disappeared now. Which is like a great thing. Which means there are chances that his brain can develop. We still have a long way to go but atleast we are on the road now. Ok now my question was whether he still needs this dreaded vaccine? And after some thinking Dr.W agreed to hold on the DTaP. So bye bye to the next three doses for now. I do not want to stand and watch Sripathi suffer with all those ridiculous reactions of unstoppable screaming and shivering and seizing. And Dr.W said we could increase Sripathi's Keppra to 5 ml for a week and then go back to 4 just to control these out of the vaccine seizures. Also give him a bolus of 4 ml today.

Then Aravind left to bring the car which was parked 20 minutes away from the Hospital as the garage 12 was full when we arrived. In that time I went to the progressive care unit on the 7th floor of the West tower, hoping to see Hannah and Carrie. Well not much luck, one Sripathi was not allowed into the room where Hannah was staying. next they gave me Hannah's room extension number and I called, but looks like Carrie was not around and nobody answered. So I left a card with a nurse and asked her to leave it in 711.

I've seen enough of unwell children for a day, we returned home gave Sripathi his bolus medicine and later in 2 and half hours time i gave him his regular seizure medication and the bad and carless parent that i'm forgot to start increasing that dose to 5 ml as told by the doctor. Why am I like this. bang me.

I should not be blogging in this frame of mind.

one day left to live series - 7 months and 17 days

A day of good tidings.
Miss.Susan, the vision therapist came over to further evaluate Sripathi following her first meeting with him. After about half an hour of showing him lights, patterns and over to carrying, holding and rocking him. Then she started explaining to me how we need to talk a lot, a real lot before me approach and touch him. That will be only way he'll learn to rather anticipate what's to happen and not get startled. But overall she said that Sripathi has a very good start. There is scope for improvement with steady therapy and practice. I was so pleased to hear such affirmative statements. Next session will be on Tuesday, when we'll be setting goals for Sripathi for the following months.

Later in the afternoon, we visited the hematologist. They did Sripathi's blood work. Then nurse Mike went over the blood results with us. We were happy and excited to know that Sripathi's hemoglobin levels have steadily increased from 6.8 to 8.3. Though low the nurse said that a progress is sufficient as it shows that he is able to absorb the Ferrous sulfate supplements. He did not have the Reticocytes count in hand and asked me to call back later during the week to get the details. Dr.H then walked in and said he was satisfied with the results and would want us to continue giving him the supplements for 6 weeks and then he would want to meet Sripathi.

So we are glad to pack our bags and fly to Houston tomorrow. I'm so excited to meet our dear friends, I should say my extended family. Hope to see that Sripathi's EEG is normal and hope he is getting the best out of his seizure medications. Fingers crossed!

Our story - part III

Sripathi being born on the 26th hour after my water broke was obviously infected. I do not remember what sort of an infection and not sure what levels was the infection, whatever that was it required him to stay on antibiotics for 2 days, administered via IV. After the second day he was fine to finally come home. We believed all the needles were done for good, how wrong we were.

So the pediatrician sees Sripathi after 2 days. He was perfect at least that’s what the ped said. Though he had minor glitches with the left eye tearing because of a blocked tear duct and we were asked to massage the eye 3 or 4 times a day. Another visit with the pediatrician in 2 weeks and we were all concerned about Sripathi’s large head. Having already done an MRI which was not really necessary, the ped suggested we get a head ultrasound. So we did that when Sripathi was 20 days old and it came back perfectly normal. So the ped measured Aravind’s and my head circumference. He said that since Aravind was also in the 98th percentile with a large head our son could have inherited it. So the matter was put to sleep assuming there was nothing to worry henceforth.

When Sripathi was one month old, he got his Hep B, which we did not give at the hospital. Later my mother noticed that Sripathi was looking away to his left and would not respond, since he was crying a little while back she though he was getting upset because he was hungry. So she asked me to nurse him and then he was fine. So we didn’t think much about the incident. When Sripathi turned 2 months old on 29th December, my parents left to India and on the same day Sripathi was given the 2nd month scheduled vaccines which were DtaP, Hep B dose 2 and oral Rotavirus. The very next day when I changed his diapers at around 7 in the morning, his face suddenly turned to his left and his eyes got focused to the left and he did not respond. I picked him up and tried to talk and get him to turn away but then only after a while did he respond. But then he fell asleep immediately. This same thing happened once again in the evening, so we called the ped and informed him and he suggested we bring him in the next day.

So on New year’s even we went to the ped, he heard all that we said, but then he did not want to take any decision without seeing things for himself, so he suggested that we take video if we see Sripathi showing signs of focusing away all of a sudden. And so we came back home and were glad that nothing happened that day. But the next day on 1st January 2010, at around 8 when I was changing Sripathi’s diapers and clothes, he did it again, in a fright I shook Aravind and asked him to get a video. I tried to show a torch light on Sripathi’s face, I tried to turn his head, I picked him up, I tried to nurse him. Nothing seemed to get Sripathi out of the fix. He came out on his own after a while and then immediately went to sleep. We were scared, so we called 911. The paramedics who came saw the video and said they were really not sure if this required any medical attention now that the baby is sleeping. But they mentioned that we need not hesitate to call them again if we felt uncomfortable. Once again at 11 I noticed the same thing but then Sripathi came out of it within few seconds.

Then at around 1 in the afternoon, it happened again and we called 911 again. They checked his vitals which seemed normal. Yet we were rushed to Arnold Palmer hospital. In the ER the first things that welcomed us were needles. Sripathi needed IV, just in case he has another seizure, the only way they can administer medication is via IV. I was psyched. I was crying and trembling and I was to continue this for over a month. We were explaining Sripathi’s condition to every physician and nurse. He was taken for a CT scan, given a spinal tab and that night Sripathi was admitted into the pediatric special care unit. He was almost unconscious because of the medications which were administered to stop what we learned were his seizures. Until then I’ve never heard about seizure, about pediatric special care, about how so many children are critically ill. We were devastated given the situation and more so because nobody could answer our questions. The next morning a neurologist visited Sripathi recommending another MRI following the one already done at birth. She said the CT did not reveal much. Also they’ll perform an EEG to monitor his brain activity. Every exam performed was terrible, I do not want to go over the details. The neurologist came in the next day and told me that the results of all the tests were not revealing anything precise. Yet its highly important that Sripathi stay on medication to control his seizures. So she prescribed a drug and wanted to keep Sripathi hospitalized for one more day to see if he is able to stay seizure free on the drug as well as to make sure he is able to keep the medicine in. So finally on the night of 4th January 2010 we left home with Sripathi and Phenobarbital (his new medication) but sadly not for long…

From an American Swami

God has taken from me too little and given me so much, For a moment I contemplated that to the degree one feels unworthy of grace, one will be grateful when it comes. It is gratitude that makes the heart receptive to receive the Lord's blessings.
(photograph - Bhimashankar, Maharashtra, India 2005)

one day left to live series - 7 months and 13 days

So Miss.Susan came home to evaluate Sripathi's vision. It was a long but fun session. I'm so grateful she could come. We waited for over 2 months to get visual therapy for Sripathi. Well from what i saw and what she explained, it was to find out in what areas Sripathi's vision needs attention.

Basically children with Cortical Visual Impairment or CVI have trouble interpreting what they see. though not necessarily an eye sight issue its caused mainly due to the brain abnormality.
They'll require several types of stimulation and practice or rather therapy to help improve their vision.

Sripathi had trouble looking at objects shown to him, he would not see any toy just shown on his face. But then he responds well to anything that has sound and light. So there is hope, yes he will be able to see the light at the end of the tunnel someday!

Apart from all this going well, Sripathi is constipated. Could be the iron supplement that's working its best. Anyways I'll need to increase his water intake which is the most recommended for constipation.

Miss.Susan will be back next Tuesday for further assessment.
There are several things lined up for next week, my appointment with the gynecologist, Sripathi's appointment with the Hematologist and we'll be flying to Houston for his appointment with the Neurologist.