So now I’m all caught up…. Gabriel started a school program designed to give people like me (a single mom) a chance to go back to work or school.
It was a long and involved process to get him in, especially with his severe condition. I’ve been working the past year to make this happen for him. The school needed permission from Gabriel’s doctors before he could attend this program. I’ve had to obtain sevrel letters stating that he was stable enough to attend this program. We needed to get duplicated meds to keep at school, etc.
The school told me they had one nurse for hundreds of students and with his complicated feed schedule it was impossible for her to set up the pump, clean it, wait for the feed to be over then come back and clean the tubing. Instead they would request additional funding
from the school board for a extra nurse, just for Gabriel. If they were successful we would not have to take him off the pump during the day. Unfortunately this route proved unsuccessful. In the end, the only way to get him into school would be if he was off the feeding pump during the
day. I waited many months but under the guidance of his GI doctor, I slowly weaned Gabriel off the pump.
We weaned him from the pump to the bolus tube over the course of many many months. On the pump, his feed took about an hour but a bolus feed takes about five minutes. I now could bolus him during the day and he would only be hooked to the pump throughout the night.
After all these months, he could now go to school. He deserves a better life. For the past year the two of us have basically been confined to one room all day, hooked to his pump… I stayed by his side and read to him sang to him, used flash cards, we played, you name it. Our daily schedule was filled with appointments with any of his 12 doctors, so we rarely got to do anything else! This opportunity would expand his world.
Gabriel finally started school in Oct of 2012, we had to ease him into this new world.
Every week I took him to school and stayed with him for a few hours. Then we would go home. He’s made many friends while at school, Gabriel also gets therapy from an early childhood group for children with disabilities. Gabriel is thriving and I finally have time to work on changing our lives for the better.