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.

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 - 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!

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.