A few weeks ago Benjamin had an equipment evaluation at Children's and boy was that a wake-up call! I left there feeling grateful that we can get all of this stuff (a special stroller, stander and bath seat), but at the same time I felt so unbelievably sad that we need it. Seeing the stroller we'll be getting (which I keep calling a wheelchair because that's what it looks like) made Benjamin's challenges that much more real to me. I think the kicker was on our way out we were stuck in an elevator with a set of identical twin boys, just about Ben's age. I had a smile plastered on my face, and I was talking to them while thinking I couldn't get out of that elevator fast enough. It was a reminder of what I should have had. I know we're blessed, and I'm incredibly thankfully for Benjamin each and every day, but not having Stephen can be torture.
In other medical news, Benjamin will be admitted to MGH in about a week to start the Ketogenic diet. It's basically an all fat diet that's used in children with seizures that are difficult to control with drugs. He'll have a special soy-based formula and we'll be given a list of all the things he can eat by mouth. We've been practicing... so far he's tried bacon in a mesh bag which he didn't mind, and just the other night I pureed a breakfast sausage which I believe, if he could, he would have given two thumbs up. He ate the whole thing! Because he has the g-tube, this diet won't be that hard to control, but it'll still be challenging because all his food has to be weighed.
It's hard for me to write more tonight because I can't take my mind off two other unbelievably special boys that are struggling with some health issues. Jadyn and I had a lot of people to pray for tonight.
More to come in a few weeks...
No comments:
Post a Comment