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10th December 2018
Hello Everyone,

I would like to share an update with you all regarding my daughter's health/recovery, she gained about 2-3 kgs within in this 2 years and we are bit happy to see her in this condition when compared to the worst situation she has been through. However, her health condition is not stable always and doctors are not much satisfied with the stoma (Ileostomy). 

Per recent visit to the doctors need to hold on for another 4-6 months for further surgery because still they see there is a dis-motility issue and stools are not passing through Anus. Also they huge developmental delay. They have recommended for Neurologist,  speech and physiotherapy consultations.

We will meet the Neurologist in the month of Feb'2019 for further neuro related diagnostics.

Thanks again,
Ravi
Hello Everyone,

I would like to share an update with you all regarding my daughter's health/recovery, she gained about 2-3 kgs within in this 2 years and we are bit happy to see her in this condition when compared to the worst situation she has been through. However, her health condition is not stable always and doctors are not much satisfied with the stoma (Ileostomy). 

Per recent visit to the doctors need to hold on for another 4-6 months for further surgery because still they see there is a dis-motility issue and stools are not passing through Anus. Also they huge developmental delay. They have recommended for Neurologist,  speech and physiotherapy consultations.

We will meet the Neurologist in the month of Feb'2019 for further neuro related diagnostics.

Thanks again,
Ravi
12th July 2018
Dear supporters,

My daughter is bit doing well from the past few months. During our last visit to the hospital Doctors confirmed that her intestines are not yet recovered from dis-motility we need to wait for another year or so to re-attempt for Stoma Closure.

Due to long usage of TPN they have observed one side effect (Which they have expected) so far that is her Eye Ball movement is not moving to the both ends and caused Squint, which requires surgery to correct the Squint for her eyes; however, we are holding it off for now.

We want her to be completely recovered from the main disease then we will proceed with the side effects part. Hopefully, she will not develop any other side effects.

Thanks again for your support and prayers.

Regards,
Ravi
Dear supporters,

My daughter is bit doing well from the past few months. During our last visit to the hospital Doctors confirmed that her intestines are not yet recovered from dis-motility we need to wait for another year or so to re-attempt for Stoma Closure.

Due to long usage of TPN they have observed one side effect (Which they have expected) so far that is her Eye Ball movement is not moving to the both ends and caused Squint, which requires surgery to correct the Squint for her eyes; however, we are holding it off for now.

We want her to be completely recovered from the main disease then we will proceed with the side effects part. Hopefully, she will not develop any other side effects.

Thanks again for your support and prayers.

Regards,
Ravi
24th April 2018
My Dear Supporters,

Without your tremendous support we will not be able to come all the way what we are going though now. Post "ileostomy" we have waited for more than 1 year to a call on next surgery which is required to close the stoma. In our followup visit Surgeon and Gastroenterology Team suggested to close the stoma on a temporary basis so that we will come to know how far the "ileostomy" helped her to recover from the Mid-gut dis-motility disorder if everything goes well then can proceed with the permanent closure part. They have closed the stoma temporary and  and we have monitored for 2 days, sad part is it did give any positive indication towards permanent closure and resulted with high blood infection (CRP >90). High temperature levels at 105 and seizure were observed.

Doctors confirmed that her intestines are not yet recovered from dis-motility then they re-opened the stoma. Currently she is in the hospital for Seizure management and we need to wait for another year or so to re-attempt for Stoma Closure.

I will keep you all posted about her condition.

Thanks again for your support and prayers.

Regards,
Ravi. V


My Dear Supporters,

Without your tremendous support we will not be able to come all the way what we are going though now. Post "ileostomy" we have waited for more than 1 year to a call on next surgery which is required to close the stoma. In our followup visit Surgeon and Gastroenterology Team suggested to close the stoma on a temporary basis so that we will come to know how far the "ileostomy" helped her to recover from the Mid-gut dis-motility disorder if everything goes well then can proceed with the permanent closure part. They have closed the stoma temporary and  and we have monitored for 2 days, sad part is it did give any positive indication towards permanent closure and resulted with high blood infection (CRP >90). High temperature levels at 105 and seizure were observed.

Doctors confirmed that her intestines are not yet recovered from dis-motility then they re-opened the stoma. Currently she is in the hospital for Seizure management and we need to wait for another year or so to re-attempt for Stoma Closure.

I will keep you all posted about her condition.

Thanks again for your support and prayers.

Regards,
Ravi. V