As a lot of you know, Luke has weekly therapy sessions. Weekly he has occupational and physical therapy and twice a month he has speech therapy. When Luke first came home from the hospital he only had occupational therapy twice a month. As we have watched Luke not progress like we want we have upped therapy and introduced other forms. His therapy is through the First Steps program. It is through the state of Indiana for children 0-3 years old that are developmentally and/or physically behind. After Luke's third birthday, he will move to a preschool program through the school system. He will have his therapy while in preschool.
Today we had a meeting with Luke's coordinator and I came with questions. I know that Luke will need therapy after his third birthday. I needed to know where we went with therapy after his birthday in a year. You might think I'm crazy, but I'm a planner. I want to know before it comes up and bites me. The answers came and a lot more. To go to school, Luke has to be mobile. The teachers can't carry Luke. He can't crawl. So...we had the talk about a wheelchair. As much as I can say it is shock, but it isn't. Jonathin calls me Negative Nancy, but I consider myself Rita Reality. He says it is the medical education, but I think it is just my mom instincts. So where does this leave us...we now have the thoughts of a wheelchair or stroller like wheelchair. While then talking to our physical therapist she brought up some other home medical equipment. If possible she would like to get a stander. It will allow Luke to "stand" and work on muscles. Our therapist also thinks we will end up needing a walker and maybe braces. Once again I am not surprised and am glad someone finally said it.
I didn't get upset until Jonathin came home. I shed a few tears. In the words of our PT, Luke will have to fight for everything he does. Crawling, walking, standing will not come easy for him. As much as I like the support from everyone saying he will catch up, it can drive a person crazy at the same time. Reality is this...Luke is no where near where he should be. I still can't get over all the hurdles he has jumped. He makes me proud daily. Just sometimes, I need someone to speak reality to me.
We were so surprised how much our Jack took off after we introduced a walker and braces. It was his ticket. Sometimes it takes a reality check, like you said, to get things moving and to start planning. It's good to be prepared! Luke will have to fight and he will continue to show you just how strong he is. It doesn't make it easy, and it's OK to shed those tears.
ReplyDeleteI'm guilty of being one of those Suzy Sunshine people. I wish I could understand more of what you are going through but unfortunately I can only imagine what it must be like. I wish I could be that reality person that you need but I can't. I am always here to listen though! Love you friend!
ReplyDelete