Not only are those new glasses cute, but they have made everyday life a lot easier. The previous pair were trouble from week one and despite trying various remedies, Toby had one of those true love-hate relationships with them. He loves to be able to see, but he sure hated wearing those glasses. He had taken to wearing his old "baby" glasses which, despite their small size and improper fit, were a whole lot more comfortable. These new glasses are an answer to prayer. In conjunction with a custom strap from Framehuggers, Toby has been happily wearing these for the past three weeks. He removed the strap once the first day he had it, but since then has been a happy camper. File this under: Things that seem like no big deal but are actually huge when you have to live with them hour after hour, day after day.
His eyes continue to do well. We are still waiting to see what the doctor decides about future surgery, but meanwhile enjoy a break from patching.
Last week included a visit to his pulmonologist and nutritionist. His lungs are doing well and we have been able to reduce the breathing treatments from twice a day to only once. The nutritionist was less pleased. His weight is down since the last time they saw him, which roughly corresponds with the period of time we have not been tubing him. Their plan is to have him weighed in a month and restart the tube feedings if he has not gained enough weight, about half a pound. My plan is to do my best to avoid this up to and including kicking and screaming. It is frustrating to think about going back. He has come so far but can't quite seem to get to the top of the mountain. It is not helping that, if anything, he seems to be eating less the past few weeks. It seems like we have already tried everything to get the good, high-calorie stuff into him. But we are hunting around for another new trick or two to try, even while knowing that success will probably only come after plodding along a while longer with more of these small steps.
Developmentally, Toby is progressing well. He loves to be read to and is engaging in more imaginative play. It is fun to read to him and later hear Billy Goats Gruff Trip Trapping over bridges, But still, diggers are his favorite. Despite the parade of tractors through town here, he has plans to some day be a farmer who drives not a tractor but a digger.
Hooray for sunshine, dirt, and little boys. And bedtime.
