one day left to live series - 15 months and 25 days

testing times...

Seizures started on Sunday the 6th of February and recurred for three days.
In the meantime he was evaluated for Occupational therapy and Oral motor therapy.
He is also registered for ketogenic diet discussion.

On 11th Sripathi's Oral motor evaluation was performed. He failed miserably in most of the assessment. While I learned that my child is trying very hard to even suck a bottle. It just goes to show that his hypotonia is eating him alive. At least we can do something about it now. They have taught us two different therapies to perform at home. This is just the beginning. We have a long way to go.

To have fate slap us harder we've got the standing frame from Shriners. Sure I know it has to be used to help him but still is hard to take. Well this would be far better until fate slaps us flat to the ground once Sripathi's wheelchair arrives. Where do I have the time to feel depressed?

And to top it all on 12th of February he started crying and wailing for over an hour and a half we thought something was wrong with one of his testicles as they seemed to move and bulge every time he wailed louder. So we took him to his pediatrician who tested him with nose swab and oral swab which came back negative. Not sure what was wrong she suggested we take him to the hospital emergency department and get a ultrasound to make sure there are no problems with the intestine or testicle.

Dr.J at Florida hospital checked him and negated the testicle torsion issue but still they was thinking only other option would be an intestine problem so she suggested getting an X-Ray as well as the ultrasound. BTW all this while from 9:30 am up until 4:00 pm he was crying and wailing.

Of course the tests came back negative. But surprisingly Sripathi slept between 4:00 pm and 6:00 pm in the hospital. Dr.J also could not suggest us anything. But she was happy that Sripathi was resting. So the issue was closed as a false alarm.

A false alarm

His head is big but beautiful,
beautiful in every sense
for even a lame puppy is pretty at a glance.

His brown eyes seem to say something,
something from the past, something that has happened
sadly the harder I try the lesser I understand.

His flaccid arms can do much,
much more than lay by his side
for when they do you'll know he tried.

We are treading a tunnel,
tunnel with more fear and less foresight
where is the end? where is the light?