As most of you guys may remember and know, my incredibly strong baby boy Bentley, who’s not such a baby anymore, is not doing very well. I haven’t given many updates because I have a lot on my plate right now, juggling life as a single mom to Bentley, but also having my other two children, his 12-year-old sister and 4-year-old sister. I have been having a lot of fear and anxiety right now with what is going on with Bennie because he is so complex and fragile, and anything can happen. I feel like I can't breathe right now; someone keeps choking me over and over again.

He ended up getting cellulitis around his G-tube area, and with being immune-compromised, he can’t fight infections as well as us. On top of that, his genetic disorder causes complications when he becomes stressed, which can come from infections or surgery and anesthesia. He was hospitalized last week on the 15th and had surgery to remove the abscess that was caused by the staph infection. He did IV antibiotics, then Wolfson’s Children’s Hospital sent him home Friday evening on an oral antibiotic. He started vomiting on day 2 of them and shaking, which I know means he is going through a metabolic crisis. No one, meaning the doctors, is listening to me and starting him on the medication that has worked for him the past two times. He is having seizures and has suffered from a stroke. His upper extremities won’t stop shaking and twitching, and his left lip/side is excessively drooling. He is whining, and his lower extremity is stiff and stuck in a frog-leg position with his toes twitching. First, it was his left hand, but now both are balled up and sweaty. He has not been able to sleep since Saturday. He is getting worse, and his pulse and heart rate will elevate super high and drop super low. His oxygen is at 94 now.

I had a meeting this morning with different specialists and have a patient advocate involved. If things do not get better, I want him transferred to another hospital, meaning UF Shands in Gainesville. My baby is screaming for help through those loving strong eyes of his, and he has been going through way too much his whole life. I so wish I could trade places with him, and no one is helping him, and it’s making me so sick. Anyways, my mom reached out to COTA, and they are stating he has no more funds in his account through them that we all raised 5 years ago. I hate asking, but I do need help and assistance with bills as I cannot work, and on top of the back and forth trips between the girls and him, I am only one person, and I can’t do this all currently on my own, but I will do whatever I need to do, promise you that for my babies.

If you cannot donate, I completely understand. Things are super hard financially right now in this economy, but if you can help in other ways and put me, my Benny, and my whole family in your prayers, I would so appreciate it. This is not only hard for me and Benny but also his sisters. It’s confusing to Ryleigh and familiar to Lillie, who struggles with it still from past experiences. Anything helps, and if you are close with hospitals or know people who can help me advocate for Bentley, please help!!

If I am busy, you can call my mom, Susan Lawson, for updates or message her. It’s really hard for me to talk about it; I get super upset. But feel free to message me too if needed. I’ll try my hardest.