Tinslee turned one on Saturday. Over the past week and a half, her doctors and nurses have told me that her vent settings and need for medications have been improving, which is the best birthday gift we could ask for, and we hope that it will help us find a medical team who can perform a tracheotomy and transition her to palliative care. For over three months, the hospital has said that her life isn’t worth living, but Tinslee is still here, and she’s still fighting.
I want to talk about some misinformation that has been going around in the media, because I believe it is important to set the record straight about my baby.
Tinslee has not had “dying spells” or blue spells requiring resuscitation for many months. The last time she had anything like that was right around her last surgery in August. She has not had any “dying spells” or blue spells since then. A lot of the nurses that care for her tell me that they enjoy caring for her. They pray for Tinslee before their shift is over, they decorate her room, and help me take good care of her. Tinslee enjoys her bubble gum oral care, and she lets us know when she needs a diaper change–but she is not having dying spells, and I do not believe that she is suffering.
Tinslee is a fighter, and as long as she keeps responding to us and showing she is fighting, as her mom I will keep fighting for her.
I hope and pray these new judges will give Tinslee a fair chance. Every parent should have a voice and decision in their child’s care.
During just these few months, Tinslee got to have her first Christmas, her first birthday, and now she’s improving! Tinslee is still fighting to get better and I’m going to keep fighting for her and with her!