Lucy's Journey with Hydrocephalus (among other things...): Esophagus Dilation #25

Lucy had her 25th esophagus dilation this week. TWENTY FIVE. I can't believe it. That's 25 times under general anesthesia (not including her other procedures), which is concerning considering there is some evidence that repeated exposure to general anesthesia can cause learning and language delays when administered to young children. It is concerning because that is a lot for a little body to deal with and there is always a risk that her esophagus will rupture requiring major surgery to repair it again. And frankly, it's concerning because I'm her mom and I never want her to be hurt or scared or uncomfortable.

True to form, Lucy did great. She had a quick procedure and a very quick recovery...probably her best one yet. We are often at the hospital for 10 hours on these days, but this time it was only 5 hours - Praise God!! And for the best news...her esophagus stayed fairly open. Her GI doctor is comfortable with an annual checkup in a year with the potential for an endoscopy / dilation, but it might not even be needed. Jason and I are THRILLED, to say the least! It is great to have this behind us for another year and be ready to focus on KINDERGARTEN for Lucy. To think we started these procedures over 4 years ago, every 3 - 4 weeks, it's awesome that her body has come this far.

On Tuesday, Lucy will be getting on the bus and heading off to Kindergarten. How awesome is that? We've met her teacher and "case worker" and the school nurse and have given handouts about hydrocephalus and TEF to them. It's an uncomfortable feeling to not be able to know everything about her day when she goes off to school, but our little one is ready to spread her wings and fly. I can't wait to see what God has planned for her.

We will share pictures from her first day of course!!

This week is a time for being joyful in our hope for sweet Lucy's future...may her diagnosis strengthen her, not hold her back. (Romans 12:12 - Be joyful in hope, patient in affliction and faithful in prayer)