one day left to live series - 26 months and 20 days

Last week Ms.Cynthia brought Sripathi a lot of good stuff. So he now has his lightbox, spinner, swirly mats. And to top it all he got his switches and pegs and the whole sensory kit. Hope all the stuff is useful for Sripathi, that i can efficiently use it to his advantage. God this is so tough because he hardly acknowledges any of the effort we put in to help him better his faculties.

We had been to the Texas Butterfly Garden and the Children's Aquarium at Fairbanks. The Butterfly Garden was really pretty, worth the time. I also collected some really pretty magnetic "stained glass" type of butterfly to show to Sripathi. On the other hand the Children's Aquarium was a drab. It was dark and dingy in the Aquarium. Sripathi could not see anything much other than one turtle whose Aquarium was surprisingly clear and well light. But I heard from my PT that there is another world Aquarium which is amazing. Hope we can make it there some weekend.

Okay now to add to the list of blows we've received. Today we went to Medical City, Dallas for Sripathi's swallow study. The Threapist tried several consistencies and nipple flows of Barium. Thin, thick, nectar consistency, Honey consistency, fast flow nipple, medium flow nipple. God Sripathi failed in everything. He kept aspirating in some way or the other. The Therapist had a look that told me for certain that she felt my son will join the ever growing list of tube fed kids. But she was kind enough to call and talk to our pediatrician who suggested that we don't decide anything right now and just go into his office tomorrow and then come up with a plan.

Until then or until a decision is made, I have to go back to feeding Sripathi with nectar consistency milk or juice in a medium flow nipple. Also I'll have to go back to feeding him pureed food. Well I'm speechless, to know that I've been feeding my son the wrong way for over 2 years! But there is light, there is definitely some light at the end of this tunnel. The therapist suggested that we progress to using Vital Stim that is NMES (Neuro muscular electrical stimulation) on his throat alt east 30 minutes 3 times a week. So I spoke to Sripathi's Speech Therapist who has graciously agreed to come 3 times a week to help him. Well I better consider it a blessing.

one day left to live series - 26 months and 9 days

Sripathi has been doing well thru December. He had just one seizure in December which also could have been avoided had we not stayed for a long time at Priya and Mahesh's house for the satsang.

The coordinator Karin Duffy from DBS provided us with a sensory room, resonance board and all the toys for Sripathi. Apart from these she had sent us some really nice classical music CD's for relaxation, concentration, thinking etc.
Sripathi enjoys classical music.

Recently i showed Sharon our PT, old videos of Sripathi rolling so well when he was 6 months. Then there were videos of him saying words like 'athai'. After watching a bunch of videos Sharon suggested that we visit a Developmental Pediatrician.

Ms.Cynthia the VT from IISD provided the Lightbox yesterday. Hope i get to efficiently use it.

I'm working on more books for Sripathi. After writing Love bound and Love Mount i just completed Love Ground. Also the Hadley courses are going well I've been scoring A+ for all my assignments.

My father gave a surprise visit yesterday. This is probably because of the drama i cause a week back when we were in Houston. Well I'm sick of taking about it, rather I'm tired.