"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Sunday, January 15, 2012

February 6, 2012

I've started and stopped this entry a few times because I had really hoped I would have some positive news to share, but Benjamin has had a tough 2012 so far. He acquired his first respiratory virus the beginning of January and we spent 6 nights in the hospital. I have to say, I was extremely impressed with the ICU at Children's. He went downhill quickly and they were able to manage his care beautifully. I think since Benjamin has been doing so well (from a respiratory standpoint) we underestimated how dangerous the implications of catching a cold/virus could be for him. We also had a false sense of security thinking that because he had his Synagis shot, he wouldn't get RSV. Come to find out, his pulmonogist said one shot wasn't going to cut it. But, I'm happy to say he's doing much better now!

We're still battling with the seizures. He's on yet another new med in addition to the diet (yes, he's STILL on the diet) with no change. If anything, they're getting worse again. It's unbelievably frustrating and sad. People ask what we can do while he's having them, and the answer is absolutely nothing. I spend a majority of my day making tick marks on a piece of paper. From the sounds of it, I think his Dr. is planning on starting another medication in a couple of weeks. There are only 1 or 2 left to try so please pray that one of these will work for him. Our little man needs to catch a break. Jadyn and I pray every night before bedtime for Benjamin's seizures to stop. She's one of his biggest supporters. She really loves her "buddy" as she so affectionately calls him now.