one day left to live series - 32 months and 12 days

Sripathi always showed signs that he enjoyed the company of other children, though he cannot always use his vision appropriately to see them or use his arms and legs to play with them he simply feels delightful hearing their voices and feeling their touch.
Here are some pictures from his school and home with his friends.

With Tanvi.

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 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.