Miriam’s first VEPTR expansion will be performed this Monday morning (June 24) by Dr. Williams. We apologize for neglecting to update the schedule here for those keeping her in your prayers (thank you!). The procedure was moved up because Miriam has been having some discomfort and irritation from one of her devices near the spot where her skin broke down in March. At implantation Dr. Williams intentionally left the VEPTR that anchors into her spine in her lower back longer than usual. (When she gets tall enough it will need to be exchanged for a larger size rod, but this extra length should help delay that larger surgery.) However, this left a tail end of the rod that protrudes noticeably under her skin. It has continued to irritate her from the inside, even after Dr. Shapiro shortened it in March. Over the last month it has developed a bursa – a fluid filled sac – and Dr. Williams decided to go ahead with her expansion to remove the irritation. He will move the extra length of rod up rather than lengthening the device, so the end should be flush with her spine and no longer protrude.

Dr. Nowlin is also scheduled to be there for the procedure, to scope Miriam’s throat and make sure there is no trace of the fibroma present. She has thankfully had no obvious symptoms, but we are glad he will be there to make sure her throat is healthy before they begin. He will also have a good baseline for comparison if (God forbid) the brief intubation required for this procedure causes anything to grow in her throat again.

Dr. Williams has told us that Miriam will likely go home Monday night, barring any unusual complications from the surgery. She should be back to herself in just a few days. Please pray for a straight-forward surgery, an easy recovery, and protection over her throat. Thank you for walking this road with us.