Ava Kate’s Story

Site created on February 19, 2019

Welcome to Ava Kate Jennings’ CaringBridge website. We want to keep our family and friends updated in one place, and provide a space for everyone connected to Ava to send encouragement her way.  Jessica and Jeff are grateful to have you on this journey with them.  


Since you are here, you may know that Ava Kate, who is a spunky, sporty, 8 yr old in Charlottesville VA,  was admitted to UVA Pediatric Intensive Care around 3am on Sunday Feb 17 following a seizure.  She had never had a seizure before, but had been managing flu-like symptoms for a couple weeks, with routine antibiotics and good care from a local  pediatrician.  


The seizure was  a big surprise although Ava had been discharged  earlier the same day with a cough, lethargy, petechiae, and abnormal blood cell counts. Otherwise,  she was doing okay.  This seizure at home (while Jessica was lying next to her bed) kicked off a neurological  battle like no fight she has ever been in.   Once in the ICU she had a second major seizure.  Ava Kate has had 2 MRIs and 2 CT scans, a lumbar puncture & as of Wednesday this week, she constantly had 7 or 8 medicines being delivered.  As of Thursday Feb 21, she has an endotracheal tube  in her airway, a feeding tube going from her nose to her stomach,  an arterial catheter in her arm to go along with multiple IV catheters, a PICC Line, Oxygen, a foley catheter, and all vitals are being closely monitored.  She has had EEG monitors on her head twice this week, measuring her brain function.  While she looks like she is sleeping, her brain has actually been quite active but “disorganized.”  


The original seizure episode, the subsequent events, and all the work up Ava has been through are scary, and extremely rare.  The exact cause of her original fevers and illness are unknown, but the worst symptom that the docs are going after has changed 3 times...Encephalitis, CNS Vasculitis, Cerebral edema, and as of today, it is CNS Vasculopathy.  Yesterday was a difficult day of discovery and decisions on treatment plan, and today has been more calm, referred to by her incredible ICU docs as “maintenance” day, keeping her comfortable and preventing her from getting worse.  Ava Kate hasn’t spoken since Sunday early morning and just today, has attempted to open her eyes several times...during some of these quick moments, she moves her head and arms showing more activity than her docs have seen since her admission. The overall prognosis is that the time from Tuesday February 19, till now, has been marked with promising signs of progress.   Please read Jeff and Jessica’s updates as they come in.


Thank you for linking up with the Jennings family as they navigate some rough terrain, keeping their minds keenly focused on Ava’s recovery and their hearts (and ours) dialed-in to what Grace and Provision the One Author of Life has ordained that this journey will consist of.  

Newest Update

June 11, 2020

Journal entry by Jeff Jennings —

Hello friends and family,

Well, it's been an interesting year to say the least. We were very concerned when COVID-19 began due to Ava's compromised immune system on her current medications. Her doctor wanted to start her on a new immunosuppressant because she was not fully maintaining between her IVIG infusions, but he decided to wait on that since it would have further compromised her immune system. We decided to continue treatment as is for the time being to see what would happen. 

Today was IVIG day. The good news is that it had been five weeks since her last infusion, and she maintained well. Her doctor said this marks the first time since starting treatment that we can say she has actually made progress in terms of her body being able to maintain with less medication in her system! Praise God! We will now wait six weeks before her next infusion to see if this trend continues. 

On another note, we are participating in the July 4th Cure JM Walk Strong Across America fundraiser. This is an important event that raises funds for Juvenile Myositis research, which is seriously lacking due to the rare nature of this disease. The walks they hold each year are their biggest fundraisers, which have been threatened by the COVID-19 pandemic.

We are rising to the challenge to encourage people to support Cure JM research by walking with us on or before July 4th - from the comfort of your home, in your yard, or around your neighborhood. 

The COVID-19 crisis has shown us that now more than ever, we need to move Juvenile Myositis research forward. COVID-19 has increased the vulnerability of children and teens with JM who receive treatments that suppress their immune systems. This is why we are committed as ever to our mission to find better treatments and a cure.

All proceeds benefit Cure JM Foundation, a non-profit dedicated to finding a cure for Juvenile Myositis.

Please consider joining us by donating to Team Ava today and sharing our Facebook Team Page.

Here are the links! 

https://www.facebook.com/donate/837683523423519/ 

http://events.curejm.org/site/TR/Walk/General?px=1006674&pg=personal&fr_id=1264

Thank-you all for your support!

Love,

Jeff, Jessica, and Ava
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