Jordyn was born in February 2015 by emergency C-section. Even though Jordyn was full term she only weighed 5 pounds, 11 ounces and had many characteristics of a preemie. She was immediately isolated from other babies because she had what looked like a rash on her back, which was cleared within days with no explanation. Shortly after birth, she was transferred to a NICU at a different hospital because she could not eat and had some breathing difficulties. She spent the next 2 months in the NICU.
Jordyn was born with club feet and hip dysplasia. When she was 1 month old we started to treat both, so she had casts on both legs/feet and also wore a hip brace. Today, her hips are perfect. She continues to wear AFOs to straighten out her feet, and she has physical therapy multiple times a week to help with her low tone and scoliosis.
Some of the challenges Jordyn faces include low muscle tone, microcephaly, CVI, and impaired hearing. Jordyn never learned how to suck, swallow, and breathe together, so she has been fed via NG, then G-tube, and today has a GJ tube. She is 100% fed through the J-tube because she is a silent aspirator and has acid reflux. Jordyn requires 30+ treatments of blow by oxygen to help her recover from her major
desaturations caused by her continuous spitting up and reflux.
Jordyn started having seizures within days of her birth. At first they were undetected by the EEG, but that soon changed. She had tonic and non-clonic seizures, sometimes over 50 a day. We gained temporary control of them around 6 months, but shortly after she developed Infantile Spasms. It took us 4-5 months and 4 different treatments before the Infantile Spasms were controlled. Some days Jordyn would have over 200 spasms. Unfortunately, her tonic seizures and Infantile Spasms have returned. She is currently on ACTH/Prednisolone, ONFI, Topirmate, and Banzel.
Jordyn has many developmental delays and is just starting to hold her own head up. While she does let us know when she is upset, we still have not seen her smile. She has many early intervention therapists coming to our house so we can give her the best chance to develop. She has PT, OT, Vision Therapy, Hearing Therapy, a Massage Therapist, Music Therapist, etc.
In December 2015, we participated in a Xdome DNA study which showed Jordyn to have a nonsense KCNB1 mutation. We finally had an answer, although many doctors feel this may only be one piece of her puzzle.
Jordyn was born with club feet and hip dysplasia. When she was 1 month old we started to treat both, so she had casts on both legs/feet and also wore a hip brace. Today, her hips are perfect. She continues to wear AFOs to straighten out her feet, and she has physical therapy multiple times a week to help with her low tone and scoliosis.
Some of the challenges Jordyn faces include low muscle tone, microcephaly, CVI, and impaired hearing. Jordyn never learned how to suck, swallow, and breathe together, so she has been fed via NG, then G-tube, and today has a GJ tube. She is 100% fed through the J-tube because she is a silent aspirator and has acid reflux. Jordyn requires 30+ treatments of blow by oxygen to help her recover from her major
desaturations caused by her continuous spitting up and reflux.
Jordyn started having seizures within days of her birth. At first they were undetected by the EEG, but that soon changed. She had tonic and non-clonic seizures, sometimes over 50 a day. We gained temporary control of them around 6 months, but shortly after she developed Infantile Spasms. It took us 4-5 months and 4 different treatments before the Infantile Spasms were controlled. Some days Jordyn would have over 200 spasms. Unfortunately, her tonic seizures and Infantile Spasms have returned. She is currently on ACTH/Prednisolone, ONFI, Topirmate, and Banzel.
Jordyn has many developmental delays and is just starting to hold her own head up. While she does let us know when she is upset, we still have not seen her smile. She has many early intervention therapists coming to our house so we can give her the best chance to develop. She has PT, OT, Vision Therapy, Hearing Therapy, a Massage Therapist, Music Therapist, etc.
In December 2015, we participated in a Xdome DNA study which showed Jordyn to have a nonsense KCNB1 mutation. We finally had an answer, although many doctors feel this may only be one piece of her puzzle.