Madelyn’s Story

Site created on March 26, 2021


Hey Family and Friends! We thought this would be a good way to keep everyone updated about Madelyn. Thank you for the food, gifts, and most of all prayers! Here's a little about Madelyn.

Throughout the pregnancy, Madelyn's long bones measured a few weeks behind the rest of her body. The specialists suspected some form of skeletal dysplasia, with osteogenesis imperfecta being their best guess. She was born on March 12, 2021 and spent 10 days in the NICU at Wellstar Cobb. They tested what seemed like every possible body system to see if anything was off. All tests came back normal, including a full skeletal x-ray, revealing no breaks or fractures. However, she rarely moved her right leg, so the nurses and doctors knew something was wrong.

Once discharged, we took her to her pediatrician. During the course of the exam, the doctor examined her hips, which made Madelyn extremely uncomfortable. The doctor was alarmed and sent us straight to get an x-ray on the leg, which revealed two hairline fractures on her femur and another on her tibia. Two days later, during a diaper change, I (Patrick) felt a pop in her left arm. She was again extremely uncomfortable, and we took her to CHOA's ER at Scottish Rite. X-rays revealed two more fractures in her humerus and one in her wrist.

So that's the beginning of the story! Check back for updates in the journal. 

Newest Update

Journal entry by Patrick Wright

Doctor visit yesterday went smoothly. Maddie was happy as could be during all of the normal check-up. The nurse was incredibly accommodating for us. She was slow and steady and patient with us. Although she knew Maddie had OI, we could tell she wasn't really sure exactly what that meant for her. So we appreciated that she simply took her time and allowed us to lead.

There were two nurses brought in to do the shots. They were quick, which was good. We were hoping Maddie would barely feel them, since we used numbing cream on her legs. This was not the case. She lost her mind when they injected the first one. Just like every other kid we've had the pleasure of seeing get shots.

But it's harder with her because we just aren't sure what's hurting. The shot or her bone? So we spent some time in the room just watching her. She didn't move one of her legs for a little while, so we were convinced she fractured. but then she started moving it again, so we thought maybe it was just the shots. She did great in the carseat on the way home.

The afternoon went okay. She was fussy, but we decided it was just gas and general soreness. She was moving both legs fine.

This morning she woke up like nothing had happened! Smiling, cooing, hungry. Just like any other day.

So overall a successful visit. Thank you for praying.

Next week we have her first physical therapy appointment on Monday. And on Tuesday morning we are having an ultrasound done on her hips.

We have a genetics appointment June 2nd. We are hoping that will jumpstart the infusion process.

We can't believe summer is already here!

We want to say thank you to our "village". We feel your prayers and support. Please continue to pray for wisdom and healing. He is able!

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