Grace’s Story

Site created on May 14, 2019


I'm starting this site on behalf of my sister Grace to help keep family and friends updated on her diagnosis and progress. 



As some of you may or may not know, Grace had been experiencing some pretty severe headaches the last number of weeks. On April 29, she was brought down to United Hospital in St. Paul. At that time, she was diagnosed with Chairi Malformation(kee-AH-ree mal-for-MAY-shun). Chairi is a condition she was born with, it's a condition in which the brain tissue extends into the spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and moving it downward. She was given a good prognosis and was discharged the following day with medications to help keep the headaches under control. On mother's day, Grace went to brunch with family. She wasn't feeling well so when she got home she took the medications to help with her headache. Shortly after, she experienced severe symptoms, she couldn't breathe, her left side went numb and her speech was slurred. Corri brought her to the hospital in Granite and she was admitted immediately. She stayed over night in Granite, but on Monday morning it was decided she would be transported via ambulance back down to United in St. Paul. Last night she had an extensive  MRI. It showed that she had a left ventricle artery dissection, which caused a small stroke. They said the prior diagnoses did not cause this dissection, that this is completely separate and likely was not the root cause of the headaches after all. Today they did a swallow test, unfortunately she didn't pass. Because she's unable to swallow, they put a feeding tube in. She's sedated to help with the pain, but she's awake and is talking. The neurologist is planning on sending her up from ICU to the rehab floor within the next day or so. They say she'll have to start speech therapy and occupational therapy. They plan on intense therapy for 3 hours a day, 7 days a week. We are unsure at this time when she'll be able to come home. However, the doctor is confident she'll have a good recovery and the symptoms should not be permanent.


I'll keep this site updated as we get updates along the way. 


We'd also like to take this time to thank everyone for the calls and texts. 

Newest Update

May 23, 2019

Journal entry by sara o —

Today I got to go with Grace to the History center with a couple of her therapists and a few other patients. It was a nice break for her to get out of the hospital setting for a couple hours. She walked on her own the entire time, including a number of stairs, she did great! 

The best news yet, Grace was given the okay today to leave earlier then her original release date of Monday, she's getting out TOMORROW! 

Her rehab is not finished tomorrow when she gets to go home, she'll start with outpatient care next week. It sounds like she'll be required to go to therapy a couple times a week until they're satisfied with her recovery. At this time we don't have a timeframe on how long that may take. 

She has a follow up MRI in three months to check the progress and recovery of her dissection. 

Since she has come so far with her recovery, I'll have fewer and fewer updates to provide. At this time we'll keep her page up and post periodically, but it will be quite a bit less then the last week or so. 

Again, a big thank you to everyone for the support, prayers, well wishes, cards, flowers, ect., for Grace throughout the last week and a half. 
Read More of the journal titled "May 23, 2019"
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