Just when we thought we were done with the whole casting process the Dr. wants more. Even though Jon’s heels touch the floor now his foot still drops when he lifts it. So back we go for more casting. At first he refused, but a new video game is a big carrot to dangle in front of a 17 year old boy. So he ultimately agreed. Then I get home and see that the authorization expires today, now I have to get that extended. I also still have appoints with the Cardiologist, the Pulmonologist and an OT evaluation with CCS (California Children’s Services) to schedule. I am tired just thinking about it all.
It was a hard appointment; I ended up having a melt down right there in the Dr’s office. Jon was giving me grief getting there, he was uncommunicative and argumentative while we were there and then he and my dear hubby were both giving the PT a hard time. She wanted to see Jon walk in his AFOs and they both just said no, can’t be done. What was that all about???? I had to tell them both to just be quiet and do what they asked. I think I might have actually told them to shut up and just do it. They did and he ended up not being able to do it. He couldn’t get his sandals on over the AFOs so I have to take him out for new shoes. The Dr wants him walking in them, not just wearing them to bed at night. It is kind of a mixed thing, yes it keeps his toes from dropping, making his muscles not work so hard lifting his feet to clear these toes but it does make getting around more difficult because of the stiffness of his gait in them and the weight and the risk of falling is increased.
Then we started talking about lifts and my dear husband the recovering control freak that he is said he was just waiting for me to make up my mind. I have no clue what we need and where to even begin looking. On top of that the powers that be who decide what DME coverage will cover see walking as a luxury. We need something to help Jon stand, he can still walk he just can’t get from a sitting position to standing by himself any more. They may consider walking a luxury, but we consider essential. So I just lost it, I started crying right there in front of everybody. The PT quietly walked out and closed the door. My son and husband just stood there looking at me. Mom NEVER falls apart; they just didn’t know what to do. Dave said he just wanted me to be happy—happy is not an option when talking about lifts. Being functional and saving our backs is the goal here. Keeping Jon walking as long as possible is the goal. The problem with being married to an engineer is that they ALWAYS think they can build a better mousetrap and for less money. The topic of discussion has revolved around the purchase of engine hoists and pulleys—my house will look like a garage. But with ceiling lift systems upward of $5,000 plus installation what do you do. We have two daughters also; we have college to pay for.
The upside is that they both treated me really great the rest of the day, Jon even apologized for his giving me a bad time. He reminded me that in reality I was the only sane one of all of us. I knew that, it is just nice to hear it! :)
Sorry to go on so long. Have a blessed day,