Audrey was born with a rare neurological condition called polymicrogyria. We received this diagnosis when she was 3 weeks old when we were admitted to children’s hospital because she was having infantile spasms.
The doctors did not give us much hope on the life Audrey would live and the things she would be able to do. There was so much unknown at that time and endless therapy sessions every week.
Well we soon learned as time went on that our girl was and is a fighter! Although her brain is constantly misfiring and we’ve had our ups and downs with getting her seizures under control she’s met her milestones and even started daycare in August.
Things were beginning to feel “normal” and we got to a point that even though weekly therapies continued, 3 seizure medications were given morning and night. We struggled with numerous feeding issues, it seemed we were figuring things out and our girl was able to live a happy life....all seemed somewhat calm and we were enjoying the many milestones our girl had worked so hard to learn like her newest one walking! We were praying for her to walk by Christmas and instead she learned by Halloween! We couldn’t wait to celebrate Christmas with her this year and have those experiences with her actually playing with her toys with her siblings.
Well that week leading up to Christmas Audrey started running a fever, she was weak and wasn’t able to walk for Christmas. Our hearts hurt but we just thought she had a cold and would get better.
On Saturday Dec 26th we were admitted to Scottish Rite for adenovirus and pneumonia. She was put on high dose oxygen for several days and around the clock breathing treatments. She seemed to be improving from a virus stand point but then on Tuesday things started changing. Audrey started having seizures and these continued and increased more and more everyday. She began losing the use of her left side and wasn’t able to walk, stand, crawl, or sit up. This was all so upsetting and we didn’t understand what was happening to our baby girl. On Sunday we watched her have over a hundred seizures and that’s when things turned worse and we were quickly moved to the ICU.
Once we arrived in the ICU things continued to spiral out of control and she was given a breathing tube and now our sweet Audrey girl is in a medically induced coma because her brain was “on fire” and they just couldn’t stop the seizures. Doctors are hoping the answer is to let her brain rest and it’s like hitting the reset button. We are told she’s the most severe neurological patient they have right now and she’s very fragile.
Once they decide to start the weaning process to see if her brain starts seizing again we have a long road after that. There are multiple medications they have to wean her off and then get her able to breath on her own again. They also are recommending inpatient intensive rehab therapy to help her re-learn all her skills. Joe and I have made the decision to put our jobs on hold for the next several months so we can be there for all Audrey’s needs and also find the time to be there for her older brother and sister as well.
These decisions are going to effect our family financially as this leave will be without pay. We have no idea what the cost of all this is going to be for all this medical care but we do know she’s had a lot of medical needs and they will be extensive and need to continue even after we are discharged so we are asking for some help to offset this financial burden if you feel led.
Our family has been SO BLESSED with donations for hospital meals, snack baskets, an abundance of prayers, and comforting texts and phone calls already! We appreciate all of these things and it’s what’s kept us strong for Audrey and to keep fighting for her. Please keep the prayers coming that our sweet baby girl will continue this fight and prove once again that she CAN do anything!
Love to you all! Mandy and Joe
- Jane Maillet
- Jason Maillet
- The Rockwood Family
- Nita Burge
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