To bring you up to date on the latest medical decisions that have been made for Ben at the facility where he lives…he had an EGD to check his Esophagus for ongoing Barrett’s syndrome (pre-cancerous condition of the esophagus) on April 20th, 2018. The biopsy came back negative (GOOD). We thought that was it, considering it was such good news. Then, it was suggested at his facility that he be put on a “bland” diet, as the EGD had also shown gastritis of the stomach, and that could cause the future threat of cancer if his esophagus became inflamed. Soooo, even though as his parents and guardians, we felt that was an extreme measure, they put the bland diet into action “cold turkey!” What a shock to Ben’s system…whose greatest joy in life was to eat what tasted good to him (which included many things that can cause gastritis of the stomach…pizza, coke, rich foods, etc.). They said he handled the change bravely…but when he came home for a visit in July, he looked into my eyes intently with a pained look, as though to say, “What is happening to me down there?” We changed his birthday cake to comply with the diet (no chocolate), and again, he looked at me/us like, “This is NOT what I expected or wanted!” It is SO hard that he not be able to enjoy the few things that make him happy, even if it IS best for him.
The second thing he is dealing with is that his right hand is shaking profusely with a tremor when he lifts it to take a drink of water (or any liquid when taking his pills). He was to see the Neurologist at his facility today (August 20th, 2018), but the computer system there is down, so that has been postponed. That is of great concern to us, since he takes many meds…three different ones for seizures, plus others. The dosages and interactions need to be checked, and quickly. All we can do is pray–“Dear Lord, thank You that You have ALWAYS been looking out for Ben, and You will continue to…Your timing perfect. Be with Ben…comfort and keep him always…giving him peace in his “toilsome” world. Please soothe a mother and father’s aching heart for their loved one. We praise & thank You most high!