one day left to live series - 12 months and 28 days

It was a long Monday. We had a scheduled appointment at Shriners hospital for children to discuss with Orthopedics based on suggestion from Sripathi’s physical therapist as he would soon need special equipments to help him sit, leg braces to help him bear weight on his legs and possible a wheelchair.

But first we had to meet with the nurse practitioner who would first read and understand Sripathi’s case. Further they did the x-ray of his spine to make sure it is taken care of before it starts curving or bending like it happens for most hypotonic children.

The Occupational therapist was kind enough to see us on short notice to discuss about Sripathi’s car seat, one that can be used for all types of travel mainly car and flight (to carefully transport him to Houston as needed) Unfortunately the products were extremely pricy and extremely difficult to handle and worst scenario was they were not fit for air travel. So we are just going to investigate further and try to work out without a special needs car seat with just the options available from Britax. We are just waiting for further inputs from therapist.

But apart from the car seat, she provided us with arm holders for Sripathi to learn to weight bear on his arms. She showed us special needs bath chairs. If we were in India I’m pretty sure bathing a special needs child would have been different. But here in an American apartment where I doubt a special needs bath chair for Sripathi may not fit, I’m desperately looking for alternative ways to help support him while bathing.

By the end of the day Sripathi was taken to the prosthetics department to get a cast of his legs. Sometime in January he will have to go back again to get the braces for his legs. We also have further appointments for his wheelchair and other special needs equipment evaluation.

We had left our house at around 9:45 am and returned only at 7:00 pm. We were all tired especially Sripathi.

To further append his list of troubles, Sripathi cannot wean off Lactulose rather we may have to go up on his does because he is not relieved of constipation. We visited the gastroenterologist the previous week and she confirmed that hypotonic children like Sripathi always need help to gets their bowels moving.

And his water therapy is not as successful either. He is not confident about staying in the water. And I’m not the least confident of letting go of the neck ring which will I suppose facilitate him to experiment. And Nancy from water ways has e-mailed me to check on our progress. So I’m thinking of capturing the therapy session on video and send it over to Nancy, maybe she can help suggest what I could do better.

It was thanksgiving, wanted to share this from the book of Ecclesiastes

To everything there is a season, and a time to every purpose under the heaven:

A time to be born, and a time to die; a time to plant, a time to reap that which is planted;

A time to kill, and a time to heal; a time to break down, and a time to build up;

A time to weep, and a time to laugh; a time to mourn, and a time to dance;

A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;

A time to get, and a time to lose; a time to keep, and a time to cast away;

A time to rend, and a time to sew; a time to keep silence, and a time to speak;

A time to love, and a time to hate; a time of war, and a time of peace.

Happy Thanksgiving!