Peeps therapy and medical

On Friday, October 20, 2017 our lives where changed forever when our youngest of 6 children suddenly experienced a sudden loss of movement in her arms and legs. Below is a fairly detailed explanation of what happened and her diagnoses of Accute Flaccid Myelitis. Her spinal damage is from C2-sacrum with multiple large lessions bissecting her spine.
Penelope is now home and currently doing amazing.
Should you choose to donate please know that your donation will go to her direct care. She will require multiple braces, wheel chairs, adaptive seating as well as transportation to and from appointments. We hope to get her into an inpatient rehabilitation as soon as possible and there will we costs associated with getting her there. There will also be modifications that need made to our current home until we have the ability to get a more handicap accessible home. 
Please feel free to reach out to me on facebook if you have questions about AFM or how Peep is doing. 

https://myelitis.org/living-with-myelitis/disease-information/#afm 



Friday October 20
Just before 3pm Penelope rolled off of a siblings bed into an empty rubbermaid tub. She cried a little but settled down quickly and we left to go run errands, When we returned home I noticed her right eye drooping and upon trying to get her out of the carseat she cryed when i moved her arms. Alarmed that she cried I let go of her arms and they fell flaccid in her lap.
We immediately drove to the nearest hospital, IMC murray, they took us straight into trauma and within minutes she was in a spinal collar and we where being loaded onto life flight and air lifted to Primary Childrens Medical Center. 
The first hours where spent in trauma bay 4 they sent all kinds of tests, full body xrays, CT scan, MRI.  At 230am they moved us to the Pediatric Intensive care Unit. 
Upon arriving at the first hospital she was still moving her legs a little bit, as the night progressed I watched that gradually fade.
Saturday October 21
PICU team explained that the Xrays showed nothing broken and the MRI showed swelling of her spinal cord. 
The team of physicians has decided to send lab work to the CDC  monday to test for Enterovirus among other things.  It was explained that IVIG could potentially reduce the swelling in her spine and she was given her first dose. 
Sunday October 22
They decided to repeat the MRI with contrast and get the entire spine. Penelope was resting well and got her second dose of IVIG.
Monday, October 23
Neurology came and explained that Penelopes injurys are not caused by her fall. The second MRI showed the damage and swelling involves her entire spine, mostly the grey matter with multiple large lessions bisecting her spine. They took the neck collar off and I got to hold her again.
The neurologist explained that Penelope has a disease called Accute Flaccid Myelitus and is paralyzed from the neck down. The rehab specialist explained that they would set us up with the supportive care for her when it was time to bring her home and that MAYBE when Penelope is much older she will be able to work a power chair with her head or mouth. 
Tuesday-Friday 
Peep was moved up to the Neuro trauma unit and then bounced back to PICU with a UTI that caused a fever. 
Saturday-Sunday 
I was extremely frustrated that our physicians had not reached out to anyone following this disease and was told that if there was someone I wanted them to consult with I could provide the contact information. So I spent all weekend researching, calling and emailing everyone i could find contact info for. 
Monday October 30th 
Our team consulted with the doctors I provided contact information for and explained why some of the treatments being tried would be to risky for Peep. 
Penelope still had no movement in her arms or legs.
Tuesday October 31
Penelope had her gtube placed. She did well but was super grumpy as expected. The nurses dressed her in the cutest kitty costume. 

WEDNESDAY NOVEMBER 1 
Penelope shocks everyone and moved her left arm at the shoulder and elbow. Still no movement in her right arm but she recoils her legs when pinched although she does not indicate the pain. 
She was casted for AFO leg braces to keep her tendon from shortening.

November 2-14
I stayed with Penelope in the hospital as much as possible through her entire stay, even taking all 5 of the other kids to stay in her room all day multiple times. This two week period was hard as I spent so much time at the hospital learning all of her cares that Steven had to miss work on multiple occasions. 
We started her estim protocol, learned her bowel cared, medication schedule, gtube care, catheter care and so much more about therapy and how to protect her. 
We also discovered she has a Solitary Kidney.