Hi everyone,

Maddie‘s pacemaker interrogation on Monday had extremely positive results.  Her thresholds dropped to a very acceptable level (at or close to what they were at the time of surgery) and she hadn’t used the pacemaker all week since her previous interrogation!  This means a longer battery life, so potentially many years until her next surgery to replace the pacemaker.  Maddie‘s sutures have also been removed with no issues (half yesterday and the other half this morning).  She’s also been smiling and laughing more each day and  showing improvement with her head control, sitting and rolling.

Praise the lord also that Maddie‘s chylous effusions were barely noticeable based on an X-ray taken Tuesday morning.  Even so, the surgeon wants to wait until next Monday before starting feeds to continue to give her lymphatic system time to recover.  We’ve applied for a transfer back to INOVA Fairfax so they may or may not follow the same plan.  However, as the surgeon put it, there’s no right answer.  It’s just a matter of trial and error and seeing when and how easily Maddie‘s body can tolerate feeds.

In terms of the transfer, both sides (doctors, surgeons, case managers) have agreed and prepared and were ready to go this afternoon.  However, insurance has yet to approve the transfer (and may not depending on if they feel this is medically necessary), so until that happens, we’re in a holding period.  Bill started work again this week, so being closer to home makes more sense for our family, especially with Maddie in stable condition.

Here’s a video of Maddie playing with Jen’s hair.  She’s starting to get back to her old self and being interested in all the same things she used to be before surgery.

Thank you so much for your continued prayers!

Bill, Jen, Abby & Maddie