Help Bentley & The Wilson family

As some of you know, Ali has been battling an uphill climb with Bentleys health for a while now. While she is in and out of the hospital prioritizing being there for Bentley, it’s difficult for her to work as much as she normally does in order to keep bills paid & also find time to rest inbetween caring for two sweet kids. Ali is a PCA at Childress hospital herself gives so much to helping other children, it’s time we help hers! With Christmas right around the corner, her daughters birthday, and things like new clothes to fit Bentleys G tube & any additional items he may need during this process of figuring out his medical conditions, finances are truly the last thing Ali should be worrying about right now. If you have the money & feel compelled to donate, I know this mama would so appreciate it. She does not ask for help, but she is the first one to give it, as I’ve even been a recipient myself of her kindness recently. If you’re one to donate, especially around the holidays, please consider helping this local family who needs support right now in more ways than one. Thank you

Below is a short description of Bentley’s current medicinal conditions from Ali-

Bentley has cerebral palsy, but we have no explanation as to why he would have it so the doctors believe that he has an underlying syndrome that we have not found yet despite extensive genetic testing. He’s had feeding issues his whole life but things went way downhill in early November when he started hardly drinking by mouth and also wouldn’t tolerate feeds through his NG tube anymore. He lost 12oz in 1 week which is huge for him because he is already below the 1st percentile so he got admitted for 2 weeks on 11/21. During that time, they did an upper endoscopy where they found nothing wrong structurally and all biopsies came back normal. This is the story of Bentley’s life. Things are very obviously wrong but everything always comes back normal. He also had a gtube placed during that admission. At this point, Bentley will not drink any formula by mouth so all nutrition goes through the gtube but he will drink pedialyte for comfort. When we got discharged from his last admission, he had gained some weight and was tolerating feeds through the gtube for a few days but then quickly declined again and started vomiting 4 days after coming home. That continued for over a week while I was communicating with his feeding team, trying new things but nothing was really helping so he lost weight again. And then he got a respiratory virus over the weekend which is just making the vomiting worse. The doctors and I believe he has a volume issue where his stomach can’t handle the volume that he needs in order to grow. We have thought that since he had the NG tube and the goal with the gtube is to try different types of nutrition where he doesn’t need as much volume but gets equal benefit. They don’t like to make those kinds of changes so close to when the gtube is placed so that is why they are waiting. And now with him being sick, we wouldn’t know if he’s vomiting because he’s not tolerating a change or because he’s sick. I am also thinking that maybe his stomach doesn’t empty in the appropriate time that it should but haven’t had a chance to really discuss that with the doctors yet. So we are back at Cincinnati Children’s admitted for the second time in a month to try to help him get through this virus and try to come up with a plan so that he stops vomiting his current feeding plan.