February 2023 AMCer

Kasen’s parents found out they were expecting in early October 2021 and were so excited to welcome a new person into their lives! Kasen’s mom had ultrasounds weekly due to high risk factors but the first couple showed nothing atypical. It was around 17 weeks gestation when medical professionals noticed Kasen wasn’t moving like he used to. He was diagnosed with Arthrogryposis affecting his arms, wrists, legs, and feet and possibly other areas, as well. Kasen’s parents were told they had options such as amniocentesis testing or termination but, they declined any invasive procedures and put their trust in their faith. Kasen was their miracle and they would not give up on him.

During her pregnancy, Kasen’s mom knew she had to find the best doctors who had the most experience with Arthrogryposis. She found out about The Paley Institute through another AMC mom and immediately made an appointment with Dr. Feldman via Zoom. Kasen’s parents were confident in their decision to see Dr. Feldman after speaking with him and vowed to do whatever it took to get Kasen there once he was born.

Around 24 weeks gestation, Kasen was spotted moving his arms again! This gave his parents hope to keep their heads up and faith that he was going to make it. He was so strong! The pregnancy was a roller coaster and they never knew what to expect. At a later appointment they received a diagnosis of “polyhydramnios,” which meant Kasen had a lot more fluid around him than he should have. After the measurements of fluid were taken several times, Kasen’s parents were told they would be having him today! Because of positioning as a result of not being able to bend his legs, it was decided a c-section was safest.

Later that evening, on June 6, 2022 at 4:50 pm Kasen Jay Greer entered this world with something his parents were hoping and praying for weeks they would be blessed enough to hear, the strongest, loudest cry. Kasen was 8 pounds and 3 ounces of pure perfection.

After Kasen was born, Mom and Dad were able to spend a few moments with him before he was taken to the NICU for evaluation. He was indeed a miracle! Watching him leave the room was difficult for them, but they knew he was in good hands. Kasen had a hard time eating and Mom spent what seemed like all day and all night trying to get him to latch and eat. They tried to switch to bottle feeding but he just didn’t have the energy. The nurses told Kasen’s parents that with his condition he might not ever latch or eat on his own or it could be a long while, so they placed an NG tube. After weeks of trying to get him to eat with very little progress the doctors told us a Gtube was necessary if we wanted to go home. At 5 weeks old they moved forward with the surgery and finally Kasen was able to leave the NICU. They were so excited to bring Kasen baby home and start stretching his joints! Early intervention is key with Arthrogryposis! The sooner you start stretching the sooner you will see the amazing progress these kids are capable of. They even sent Kasen home with a little baby set of splints for his wrists. So cute!

Once home they started casting for Kasen’s clubbed feet and made bigger splints for his wrists as he grew. He had new casts put on each week for months, a common AMC treatment called serial casting. Soon Kasen began therapy every other week and also no longer needed his gtube! Mom and Dad would work on stretching his wrists and relaxing his joints but there wasn’t much physical therapy they could do on his legs until he had surgery to make corrections!

Once Kasen was around 4 months old, they made the trip out to Florida to meet with Dr. Feldman in person and he suggested leg and feet surgery around 7 months old. With dislocated knees and legs that do not bend, surgery is required to make corrections that will allow weight bearing. Along the way Kasen’s parents met some amazing doctors and nurses at St. Louis Childrens Hospital and at Dr. Pauls office at Missouri Baptist. They also helped get Kasen to where he needed to be and they never gave up on him.

Kasen and his parents are currently in Florida for over a month for his surgery with Dr. Feldman and to receive pre and post op therapy at The Paley Institute’s world class therapy center. They had a hiccup in their original plans and had to reschedule everything to later in the month but they are now back on track now and the goal is to get Kasen’s legs and feet into a position that will allow him to start bearing weight so he can eventually learn to walk.

Despite everything Kasen has been through at such a young age, he is one of the happiest boys you will ever meet and his parents never want that to change! They want him to always be happy and know that he is perfect the way he is while doing whatever they can to help Kasen be as independent as he can be. 

Helping AMC Families Incorporated is assisting Kasen’s family with $5000 to use towards their lodging expenses during their stay in Florida.