Help Sophia Beat Rett Syndrome
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Our Story:
Our beautiful baby girl started life out completely normal, healthy, happy and meeting her developmental milestones.
Then, when we went in for her 12 month checkup we spoke about Sophia still not being able to pull herself into a standing position. Her doctor said we would monitor it until her 18 month appointment and if she did not start standing or walking we would start physical therapy.
In september 2016 Sophia was 18 months and still not pulling to stand. We started PT and quickly were advised to incorperate OT as well because Sophia could not grasp things with her hands. October we started OT along with PT.
During a feeding evaluation in OT, Sophias therapist noticed she was having difficulty swallowing and her face was turning red. We went in to the docotor that afternoon and were scheduled for an esophagram the next morning and an appointment with a pediatric GI specialist after the esophagram.
The esophagram showed that Sophia was having silent aspirations. the GI scheduled a modified barium swallow study. Unfortunately Sophia developed a fever the next morning and was admitted to Dell Children's.
Over the next five days Sophia had an NG feeding tube placed, MRI, Neuro evaluation, genetics testing, and the swallow study done. the Swallow study showed that Sophia could not have anything by mouth without choking. we went home with a NG feeding tube.
Speech therapy/ Vitalstim began at the beginning of this month, January 2017.
Our diagnosis:
Today we went in to get the genetics results and were given the diagnosis of Rett Syndrome. Our main goal now is to get Sophia the best care and obtain the best quality of life for her. We will have to travel to different specialist and buy appropriate medical and daily living equiptment for Sophia. We will also have to keep her in continuous therapy even after the time frame that the insurance allows.
How your contributions will help:
These funds will be used to purchase the appropriate daily living and medical equiptment that our insurance will not cover, the expended therapies that she will need and the gas and travel expenses to help Sophia on her journey with Rett Syndrome. We are grateful for any and all monetary contributions but if this is somethinga that you cannot contribute we are requesting as many prayers for our sweet baby girl as we can get.
Thank you so much for taking the time to read though our new journey, I am truly honored to be this little girls mother and will do everything in my power to help her be as happy as possibe.
Jacquelyn Scott
Our beautiful baby girl started life out completely normal, healthy, happy and meeting her developmental milestones.
Then, when we went in for her 12 month checkup we spoke about Sophia still not being able to pull herself into a standing position. Her doctor said we would monitor it until her 18 month appointment and if she did not start standing or walking we would start physical therapy.
In september 2016 Sophia was 18 months and still not pulling to stand. We started PT and quickly were advised to incorperate OT as well because Sophia could not grasp things with her hands. October we started OT along with PT.
During a feeding evaluation in OT, Sophias therapist noticed she was having difficulty swallowing and her face was turning red. We went in to the docotor that afternoon and were scheduled for an esophagram the next morning and an appointment with a pediatric GI specialist after the esophagram.
The esophagram showed that Sophia was having silent aspirations. the GI scheduled a modified barium swallow study. Unfortunately Sophia developed a fever the next morning and was admitted to Dell Children's.
Over the next five days Sophia had an NG feeding tube placed, MRI, Neuro evaluation, genetics testing, and the swallow study done. the Swallow study showed that Sophia could not have anything by mouth without choking. we went home with a NG feeding tube.
Speech therapy/ Vitalstim began at the beginning of this month, January 2017.
Our diagnosis:
Today we went in to get the genetics results and were given the diagnosis of Rett Syndrome. Our main goal now is to get Sophia the best care and obtain the best quality of life for her. We will have to travel to different specialist and buy appropriate medical and daily living equiptment for Sophia. We will also have to keep her in continuous therapy even after the time frame that the insurance allows.
How your contributions will help:
These funds will be used to purchase the appropriate daily living and medical equiptment that our insurance will not cover, the expended therapies that she will need and the gas and travel expenses to help Sophia on her journey with Rett Syndrome. We are grateful for any and all monetary contributions but if this is somethinga that you cannot contribute we are requesting as many prayers for our sweet baby girl as we can get.
Thank you so much for taking the time to read though our new journey, I am truly honored to be this little girls mother and will do everything in my power to help her be as happy as possibe.
Jacquelyn Scott
Organizer
Jacquelyn Cline
Organizer
Cedar Park, TX