On the morning of Friday, October 24, 2014 Faith’s nurse, Amy, was just getting Faith out of bed around 7:15am. Amy yelled out “Ashley, come look at Faith’s eyes.” So, I went into her room to take a look at her eyes.They were not tracking the same. One eye was looking one way and the other, the other way. I didn’t think to much of it because it was morning and things like this happen all the time. Many times, with Faith, something will not be normal in the morning and then later that day everything will be back to normal. I was going out of town for the weekend and so I had Mic to come and check it out since he was going to be in charge of her for the next few days. Fast forward to about 4:00PM the same day. I called Mic to check in and he told me that Faith was still not tracking and was more drooly. Then there was a short silence. And I said “What else?” I could tell there was something he wasn’t telling me. He said “Faith has stopped smiling. She is unable to smile.” I said “You had better call the doctor and tell her just to keep her updated.” Mic called and they ended up going to the ER at Children’s Mercy Hospital Friday evening. Faith’s doctor was concerned there could be a shunt malfunction. At the ER, Faith had some xrays and CT of her head. All was well with the shunt. The ER sent them home.
Monday, October 27, 2014 Mic and I went with Faith to a routine doctor visit with the Endocrinologist in Kansas City. This appointment had been scheduled for months. As we were leaving the Endocrinology office, Faith’s primary doctor at CMH (children’s mercy hospital) called and asked if we were still in Kansas City. She asked us to come to her office at the hospital so she could get a better look at Faith and hopefully to get her in for some more testing. When we got there the doctor was looking Faith over and asked “When did she stop blinking?” Mic and I had no idea that Faith wasn’t blinking any more. The doctor admitted Faith to the hospital for an MRI and requested the neurosurgery doctor look it over.
Tuesday, October 28, 2014 MRI complete
Wednesday, October 29, 2014 Neurosurgery talked to us and said he wished Faith had a “healthier spine”. Well, we all wish that. He didn’t say much more. He did say we will just have to wait and see if she gains her control back in her face. Complete side note: She knows when she needs her nose or mouth suctioned or wiped off. She can feel her hair on her face. But she can’t smile, blink or move her nose. To me totally weird.
Friday, October 31, 2014 I got a text while at work from Faith’s nurse saying, she can’t wake up Faith from her nap. Fast forward about 30 mins. I went home and when I got there Mimi and Papa (Doc and Phoebe) were there.
This day was Amy’s (Faith’s nurse and Best Friend) last day with us and my parents came over to tell Amy goodbye. They didn’t know Faith wouldn’t wake up. But Faith is totally in LOVE with my parents and she woke up at the sound of their voices. Amy has been with Faith for 3 years and with Faith being 3.5 years old it’s a big deal that Amy is no longer with us. :( I am still having a hard time with no Amy. She became part of our family and one of MY dearest friends. She wasn’t just a nurse to me she was my helper. She treated all three of my kids as if they were her own. She didn’t take care of just Faith, she took care of all of us. I never had to doubt anything she did or her question her judgement on anything EVER. I miss her SO much! Amy moved to Washington State to be close to her father. She has a new job being a nursing director and I’m sure she is Amazing!
It is now December 7, 2014 and Faith has gained some control in her face. Her right side is better than her left. She is now able to wink not blink but wink her right eye on command. It’s so strange that someone can wink but not blink. I am still learning new things about the human body almost everyday from this girl. She is pretty much base line (back to her normal self) other then her face muscle control. She is back to being her cute sassy self.
Monday, October 27, 2014 Mic and I went with Faith to a routine doctor visit with the Endocrinologist in Kansas City. This appointment had been scheduled for months. As we were leaving the Endocrinology office, Faith’s primary doctor at CMH (children’s mercy hospital) called and asked if we were still in Kansas City. She asked us to come to her office at the hospital so she could get a better look at Faith and hopefully to get her in for some more testing. When we got there the doctor was looking Faith over and asked “When did she stop blinking?” Mic and I had no idea that Faith wasn’t blinking any more. The doctor admitted Faith to the hospital for an MRI and requested the neurosurgery doctor look it over.
Tuesday, October 28, 2014 MRI complete
Wednesday, October 29, 2014 Neurosurgery talked to us and said he wished Faith had a “healthier spine”. Well, we all wish that. He didn’t say much more. He did say we will just have to wait and see if she gains her control back in her face. Complete side note: She knows when she needs her nose or mouth suctioned or wiped off. She can feel her hair on her face. But she can’t smile, blink or move her nose. To me totally weird.
Friday, October 31, 2014 I got a text while at work from Faith’s nurse saying, she can’t wake up Faith from her nap. Fast forward about 30 mins. I went home and when I got there Mimi and Papa (Doc and Phoebe) were there.
This day was Amy’s (Faith’s nurse and Best Friend) last day with us and my parents came over to tell Amy goodbye. They didn’t know Faith wouldn’t wake up. But Faith is totally in LOVE with my parents and she woke up at the sound of their voices. Amy has been with Faith for 3 years and with Faith being 3.5 years old it’s a big deal that Amy is no longer with us. :( I am still having a hard time with no Amy. She became part of our family and one of MY dearest friends. She wasn’t just a nurse to me she was my helper. She treated all three of my kids as if they were her own. She didn’t take care of just Faith, she took care of all of us. I never had to doubt anything she did or her question her judgement on anything EVER. I miss her SO much! Amy moved to Washington State to be close to her father. She has a new job being a nursing director and I’m sure she is Amazing!
It is now December 7, 2014 and Faith has gained some control in her face. Her right side is better than her left. She is now able to wink not blink but wink her right eye on command. It’s so strange that someone can wink but not blink. I am still learning new things about the human body almost everyday from this girl. She is pretty much base line (back to her normal self) other then her face muscle control. She is back to being her cute sassy self.
