My name is Kristen. On August 10th 2016, my mommy heart broke into a million pieces as I watched my sweet baby girl fight for her life while bacterial meningitis took over her brain. I sat by her side, held her itty bitty hand, and prayed that she would make it through the infection.
After three months and one day in the hospital, we were finally taking our Mighty Millie home. Bacterial meningitis causes significant trauma to the brain and as the brain heals, it leaves behind a large amount of scar tissue. As a result of the trauma and scar tissue, Millie has started suffering from seizures on a daily basis. Millie was also born with a rare kidney disease that affected her hearing. She is profoundly deaf, but this did not hold her back from being a chatter box. We use sign language to communicate with Millie, and her little hands were constantly in motion before she contracted bacterial meningitis.
One of the sweetest things to see was a conversation between Millie and her big brother, Maddox as they signed to one another. Millie’s big brother has been at her side since we brought her home as a newborn. The bond between Maddox and Millie was instant. He calls her “his MayMay”. When she learned to sit up on her own, Maddox sat behind her in case he needed to catch her. When Millie learned to crawl, Maddox was at her side, crawling with her and cheering her on. When she learned to walk, Maddox held her hand. When Millie walked unassisted for the first time it was Maddox who she walked to. He held his arms open, ready to catch Millie. She slowly took step after step while Maddox encouraged her to go a bit further. The journey of Millie’s first steps ended in a proud embrace from her big brother that overflowed with giggles.
Between the monitoring of Millie’s kidneys and the malformations of her middle ears, we were in and out of doctor's appointments constantly with our newborn Millie and her big brother Maddox. Maddox has been her hero during every appointment. He has held Millie through scans, tests, blood draws and evaluations. After Millie contracted bacterial meningitis, Maddox’s big brother role immediately amped up to a whole new level. The hours he spent holding her through the rough moments in the hospital turned into days, that turned into overnights, and eventually he moved into the hospital with us. We believe Millie progressed so well because her best friend was at her side, playing with her, reading to her, and encouraging her to go a bit further.
Millie has quite a few neurological changes, but that does not stop Maddox from treating her exactly like he did before she got sick. He is helping her learn to stand, walk, and to use her hands to sign again. He gets excited when Millie grabs a toy he is helping her play with. Millie does not smile often, but when she does, it is pure magic. We celebrate each smile. Each one.
Boats for Millie
Between her seizures and medications, Millie is being held back from progressing at her full potential. I have desperately reached out to Boston Children’s Hospital for help. A neurologist there has accepted Millie’s case and has already given us a second opinion. There is a procedure they want to perform on Millie that will possibly cure her seizures. The doctor is hopeful we will get more of “Millie” back after the procedure.
Maddox understands how important it is to get Millie to Boston and also understands the great financial cost that comes with the treatment Millie needs. Now, on his own, Maddox has started making paper boats to sell so he can help get his baby sister to Boston. He has a lot of paper and a really big heart. Boats are $1 a piece and can be personalized by Maddox.
Thank you all so much for the continued thoughts and prayers for our tough nugget, Mighty Millie...and her amazing big brother, Maddox.