Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Let me first introduce myself as the owner of this journal and site. My name is Cara Barone and I am one of Mia's aunts. Mia and her parents have given me permission to set up this site to best coordinate communication of Mia's progress as well as coordinate help for the family during this challenging time.
Mia was diagnosed with most probable Guillain- Barre Syndrome on 9/17/2018 when a good friend of hers from college took her to the ER at College Station where she attends college at Texas A&M. Guillain-Barre is a rare autoimmune disorder where the body attacks the myelin sheath which is the conductive lining of our nerves and nearly all patients end up with complete (but reversible) paralysis. This article describes her condition and is fairly easy to read:
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Guillain-Barré-Syndrome-Fact-SheetWithin 2 days Mia had near complete paralysis . Given the severity of her presentation, we quickly transfered her to Houston so she could receive the best medical care and support. This was an excellent decision because just a few days laters her breathing muscles were failing and she required mechanical ventilation in the ICU. Her diagnoses of Guillain Barre syndrome was confirmed with further testing.
Mia remained intubated and required full mechanical ventilation in the Neuro ICU for almost 2 weeks at St Lukes Hospital in Houston. Because her breathing muscles were not strong enough to support breathing all on her own the doctors decided to place a tracheostomy for continued breathing support.
After nearly 4 weeks at St Lukes Hospital, the doctors felt she was strong enough and ready to transfer to TIRR Memorial Rehabilitation Hospital.
http://tirr.memorialhermann.org. We arrived here on Friday Oct 12th.
Mia has a long journey ahead to recover her strength and learn how to function and walk on her own again. Although she has an excellent prognosis for full recovery, it will truly be an ultra-marathon in rehabilitation certain to be filled with joy and much frustration. We have been told that 75% of patients walk again within 6 months of diagnosis and 85% walk within 1 year. For some people it can take even longer.
While at TIRR she will have daily and intense physical and occupational therapy sessions. She is expected to be here for anywhere between 2-4 months before she is ready to transfer back to Austin to continue therapy as an outpatient while living at home with her parents.
As I write this first entry, today was the first time Mia was helped to sit up in a wheelchair with supports. It was Amazing!
Gina, Mia's mom, will be staying with Mia in Houston until she is ready to be discharged safely to home. Hot ticket items are meal support for Greg (Mia's dad) , Dominic and Luca (Mia's brothers) as well as helping to coordinate kid/teen activities with Greg when needed. Thank you! We hope start meal deliveries this week. :)
For meal support click here or on Support Links below t sign up (THANK YOU!):
https://docs.google.com/spreadsheets/d/1PBnuYy_pJgHjv5wmETLXGtRPlPnDs7BxF0T6vOD9RIc/edit?usp=sharingStay tuned for other ways to help....
I will continue to write updates as to how she is doing and you can write encouraging notes to Mia and her family on this site. For now, she has requested no visitors aside from her family so she can focus all of her energy on getting stronger.
Lastly, friends and family members should feel free to forward this page to anyone you think would like to help and/or follow Mia's progress!!! :)
