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.

one day left to live series - 7 months and 10 days

So we had another visitor and Sripathi is catching up with his Iron requirements while experimenting with new food. And look here my baby is cutting his first tooth. yippieee.

Yesterday our friends Sambi, Vinotha and their little saint Pranav came over to meet us once before they leave to Tampa for good. Now my reasons to visit Tampa is just getting stronger.
Pranav must be 3 and a half now and a very daddy loving kid. He loves to chant the maha mantra and adores Aravind during the satsangs. We'll miss him and the family during the satsangs. But I think it would be a really fine idea to drive down once a month to Tampa to have satsangs with new friends there.

So Vinotha brought Sripathi a cute little toy called the lullaby glowworm. Seems to have become Sripathi's favorite the first time he heard and saw the glowing face of the worm. We had a nice chat discussing parenting in general.

So what is Sripathi eating these days? He's getting this close to liking the Alimentum formula. Progressed from 2 ounces to 3 ounces today. While that sounds good there is more on his plate these days. I introduced rice cereal yesterday and he seems to like it, more so because i mixed it with breast milk. Apart from that we added banana to his stage one food list.

Okay there is more good news, we had a scheduled appointment with the Hematologist today and Sripathi had another blood work done. This one was to decide if he is improving with the new iron supplement in his diet or would he require further invasive tests performed to diagnose issues with his critically low levels of hemoglobin. So Dr.H was happy when he entered the exam room to inform us that Sripathi seems to be improving with the iron. His hemo levels have increased to 6.8 form 5.5. Though its still critically low (anything less than 8 is not acceptable) but what he was looking for is some improvement which is what Sripathi's blood work revealed. Further tests to find the Reticocytes from the same blood samples will be performed at Florida Hospital and we'll hear about the same during our next office visit with Dr.H next Tuesday.

Miss.Susan, yes a new therapist to work on Sripathi's vision will be here on Friday to evaluate him. Hmm.. hope we are getting somewhere closer to the light at the end of this tunnel.

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.

From an American swami

Love is everlasting forgiveness. Wisdom is to see everything in relation to the whole. If you understand that everything belongs to Him, you will be free of sadness - Anandamayi Ma.

A memorial day post

As I was browsing through my old photographs I found these from my trip to Washington during Christmas 2007. Its a honor to share these.

That's me, not sure what was running in my head then.
Life has taken me places and taught me several lessons.
This one was probably 'respect'.

Thank you Amy and the Glad to give foundation

During the second week of May, Amy Clark founder of Momadvice.com had organized a virtual bake sale on her blog Motherload. This virtual bake sale was a fundraising event for pediatric cancer research. With thoughtful support from Glad. This was my winning entry.

And surprise surprise I received a mail from Amy during the last week of may stating that won the contest. And today I received my goodies and a sweet little card from Amy. I loved everything i got and the apron is just lovely.
Here sneak into my box.

one day left to live series - 7 months and 3 days

Sripathi met his friend Arjun for the first time on Sunday. Arjun is our friends Mohit and Geeta's (yes her name is also Geetha but without the h) 4 month old son. Arjun is small but extremely cute. I was holding for a while and he dozed off on my shoulders. We were all so excited that we did not click any pictures. And we discussing all baby stuff, how do they sleep, all the new expressions they learn each week. Though they stated for less than an hour, it was really nice meeting up with them after a long time. Hope we will be meeting them soon.
Apart from all the excitement, Sripathi is due for his HIB tomorrow. And in 2 weeks we'll be flying to Huston for his scheduled appointment with the neurologist.