Hi praying friends,

It’s been a hectic week for Maddie. In order to ensure proper feeds, the doctors performed a small operation to install a gastrostomy tube directly into Maddie’s abdomen. The operation went smoothly and they started feeding from it last Sunday morning and she is now taking up to 7 ounces of formula at a time. She can also open her right eye about half way now although still no tracking. The doctors think she doesn’t have any damage to the nerves directly behind her eyes and that it’s more a neurological problem. She has positional stridor (heavy and partially blocked breathing). They did a laryngoscopy and found swollen vocal cords along with flappy tissue that they believe is causing the stridor and should correct over time. She cried during the entire procedure, which is good medically, but heart-wrenching. Her hands have loosened up a bit from being clenched tightly last week and shes gained a bit of weight as well.

Medically Maddie was cleared for discharge during the middle of this week, but we were a bit torn about where to send her for rehab. Due to insurance, she has to be transported directly to a rehab facility and the two options were DC or Baltimore. Ultimately, we chose to go to Kennedy Kreiger Institute in Baltimore based on our research and recommendations. This morning the ambulance team came and took Maddie for another ride while we drove separately in our car. We finished her admission paperwork, met her therapy team (who got a stroller ready), and she’s now settled in her room here in Baltimore.

We haven’t talked with the team yet about her discharge goals, but based on what people have told us, they estimate a 4-6 week stay before continuing her recovery at home. The title image is the parent room at KKI with showers, a coffee machine, water/ice, a fridge, and lockers.

Jen will stay here with her at KKI and Bill will return back home to be with Abby. We plan on letting Abby visit Maddie every weekend and maybe even explore Baltimore harbor a little bit.

For your prayers:
Maddie continues to recover neurologically with more awareness and purposeful movements.
Jen physically and emotionally as she’s tending to Maddie at the new facility.
Bill and Abby as they are going to be away from Jen and Maddie for an additional extended amount of time.
Grandparents and family who will help on the home front on top of their normal responsibilities

This is a step forward for Maddie and we are confident in God’s provision as we continue this journey. Thank you all for the love, support, and prayers. We appreciate all the emails, notes, and even cards you’ve sent.

Thank you,