My precious granddaughter has recently been diagnosed with arthrogryposis multiplex congenita, a rare condition characterized by rigid joints that cannot fully bend or stretch, and underdeveloped muscles surrounding those joints. It is primarily caused by lack of movement in the womb. In Amelia’s case, she was breech in utero and a fibroid was pressing against her legs for several months, preventing her from moving freely and allowing her joints and muscles to form properly. Her low muscle tone has also caused feeding issues, which has come with its own difficulties. This condition also is an umbrella diagnosis that usually comes with more genetic conditions, so this seems like it might just be the beginning of diagnoses.

Amelia’s care is extensive as Becca and Levi search for the best treatments for her. Her care team currently consists of her pediatrician, myofascial bodywork specialist, neurologically-specific chiropractor, tongue tie specialist, primitive reflex therapist, pediatric orthopedic specialist, speech/feeding therapist and will soon be joined by physical therapy and occupational therapy. Some of these therapies are not covered by insurance and many will only be covered for X number of visits. But her need for these treatments will be ongoing for the foreseeable future. In addition, the gas to travel to appointments has been a huge expense, as her doctors and therapists are located in Tulsa, Broken Arrow, Sand Springs, Verdigris and OKC. They will also be seeking a second opinion from another orthopedic specialist, either in OKC or Dallas.

If you feel led to help financially, any amount would be appreciated.

Prayers are also needed! Specific things to pray for include:

For Amelia to have the right therapies and the ones she doesn’t need would not be on their radar. 

For genetic testing and neurology referrals to speed up. That they could get an appointment in a cancellation spot. 

For wisdom in finding a different pediatric orthopedic, if one is needed. 

For Becca’s milk supply to increase and stay up. The stress from everything has really caused it to lag. 

For their three little boys to be understanding and not be impacted negatively by the differences in their life right now.

For strength and endurance for Becca and Levi as they navigate the days ahead.