one day left to live series - 6 months and 25 days

An update on Sripathi. Well for the past couple of days I've been noticing that he is about to have a seizure and when I talk to him and try to get his attention he is able to come out of it. But today though i tried my best he did end up having a seizure but was a very short one say 30 seconds or so. But the process of him about to have a seizure like the eyes pulling away and then coming back to normal was taking place in intervals for almost 4 minutes. So now I'm a little confused if I should consider that period as part of the seizure? But then again his postictale state was very obvious. If his seizure was long or severe he usually goes to sleep for alteast 30 minutes but this time around he did not feel really sleepy. But I'm planning to wait and see how Sripathi is able to handle his seizures before we can contact the neurologist because its otherwise too early to adjust the medication.

Apart from the seizure his therapy is going on, but Miss. Peg is unable to do much once Sripathi starts wailing. He is so uncontrollable. She is advising me to not pick him up too often and try to fnd a better way to soothe him. I'm trying to teach him to use a pacifier but he just wouldn't take one. I'm planning to buy different types of pacifiers and keep trying them hoping he will prefer to take one someday and the sooner the better.

For now I'm trying to workout a schedule or a routine for Sripathi because we lose a lot of time during the day when I could be geting him to do some of the exercises probably spread them throughout the day rather than get him to do it all at one time.

one day left to live series - 6 months and 15 days

So today Sripathi did take good naps, and he also went to bed early like around 8:00 pm but again he kind of lost his sleep for over an hour. I've just logged in after trying to put him to sleep this past hour.

Ok apart from that today was the second session with Miss.Peg for this week. He learned yet another exercise which he didn't like. As his arm muscles are week she taught us how one person can position him on his knees and hold on to his tummy and make him support his own head while the other person holds his elbows down by his sides. I know all this sounds like torture but we have to do whatever it takes to make him strong but yes slowly and steadily. we cannot afford to lose what we have by hastily hurrying things up.

oh BTW Aravind (my husband) and my in laws had been to NASA, well not quite literally. They actually went there to watch the shuttle launch. I did not want to take Sripathi, as its too hot out there. As its customary in Orlando they we stuck in traffic both ways. But they were on time to watch the shuttle take off at sharp 2:20 pm. It was a successful launch of Atlantis on its STS-132 mission with a crew of 6.

Right now my eyelids are so heavy and painful, i need some sleep. Good night.

one day left to live series - 6 months and 14 days

Sripathi did all his exercises well today, especially the ones that involve him to sit side ways. It was very difficult in the beginning and now he's getting the hang of it. And he had 2 good naps today. He was happily napping this morning when the coordinator Erin from Lighthouse, the visual therapy institute arrived. Since it was only a paper work session, Sripathi's nap went uninterrupted. Erin told me that the visual therapist would call us in less than 2 weeks and schedule an appointment to meet Sripathi.

Later in the afternoon he had another good nap though he woke in between it was not too hard for him to get back. And while he was napping there was yet another visitor. Though we knew this visitor was on his way, we never knew when he would knock at our doors. So who is this visitor? we had ordered a walking and barking Pluto for Sripathi, that was the mother's day gift from me to Sripathi. This toy is recommended for ages 3 and up but i still went ahead and bought it because Sripathi loves to hear barks. Funny right, but sometimes when he fusses to take his medication, i bark and yap like a puppy and he immediately smiles.


When we showed him his new friend, Sripathi didn't acknowledge but he didn't reject it altogether. So i think he'll grow to like his Pluto. Here is a picture of Pluto, will share a picture of Sripathi and Pluto once they start bonding :)

one day left to live series - 6 months and 13 days

Miss. Peg taught us few more exercises today. She also informed us that based on her evaluation from the last visit, it seems Sripathi behaves like a 2 month old baby. So our goals are now to ensure that he learns to control his head and trunk. We need to make sure Sripathi gets these exercises done at several intervals in a day. As his head is large and heavy most of these physical therapies are going to be difficult and painful for him. But we have start somewhere to help him stay independent someday. Me and Sripathi need an awful lot of strength and determination to perform these exercises.

Tomorrow is yet another therapy day. The visual therapist will be visiting Sripathi and evaluating him. BTW last night Sripathi had a tough time getting back to sleep after he woke up at around 2:00 a.m. He got some nap probably 30-40 mins twice this afternoon. I know that's not enough at all. Babies his age are supposed to nap 2 to 4 hours in the day and sleep for 12 hours at night. And Sripathi probably manages to get some 7 hours of sleep during the night and just 40 minutes of nap time during the day. This is the reason i'm trying to find about sleep therapy.

I was just looking up for some quote on sleep and see what i found
People who say they sleep like a baby usually don't have one. ~Leo J. Burke

Good night