So we have been home for almost a week. In some ways, we are settling in. Zine is stronger. He has mastered his sliding transfers again. He still goes back to bed and naps everyday. But the past couple of days it’s only been one nap instead of two naps. And some mornings he does not want to get up too early. Which is quite unusual for him. He has been known for being the early bird in our house.
He is still not wanting to eat a whole lot and seems to be sensitive to what he eats. And nothing tastes good to him. I welcomed him to my world where nothing tastes good. Not sure he appreciated that welcoming too much.
He has found his voice again! He is back to rambling and talking to anyone who will listen and then sometimes to those who don’t really want to listen. Ha! If you know Zine, you totally understand. However, what we have figured out is that Zine talks non stop because when he talks non stop, he controls the conversation and you can’t get too personal. He would hate for you to ask a real personal question and he have to tell the truth or change the subject.
We have home health nurses, home health occupational therapy, and home health physical therapy. He doesn’t like physical therapy. He thinks they are mean to him. 🙂 I personally like having home health nurses coming in. It gives us a place to call, when we have a problem or question. Two nights ago, we got his cath bag caught in the shower chair. So now I have a cath bag that has a hole in it and no extra bag. YIKES! So I call home health and when my brain doesn’t work…theirs does! So they had a solution for the night and came out the next day and got us a new bag. And I didn’t have to get out and drive into town to get one. Yay!!! But with nurses and therapists coming in almost daily, it does make for a crazy house. One day we had two different nurses come in one day.
Zine still does not want to admit the reality of where he is. So that continues to be a struggle. What is more important independence or safety? Finding the balance between the two is often difficult. A question we battle and discuss daily. He also has been struggling with denial/anger. Unfortunately, those of us that live with him….we don’t like the anger or denial stage at all. But we do try to be nice…sometimes.
I am definitely not settling in. I don’t feel well. I am very depressed. I am not motivated to do anything. I am tired. I am extremely unsettled and dissatisfied. Most all the time, I tend to roll with the flow. But seems like these past two weeks, I have not rolled with the flow as well as I usually do. Desiring peace and contentment for sure. I have more than just Zine weighing heavy on my mind right now so when multiple things are just tugging at me constantly, I think I become a bit frustrated and overwhelmed.
We still haven’t got back in a good school routine yet. Yes…we will be doing school all summer. But that’s okay. We won’t count how many days we’ve had to take off this semester. But when I think about it, we may not have finished our math books, but my kids have learned SOOOO much aside from the books. They’ve learned life lessons that many never learn. Their hearts and lives have been changed forever. So they’ve learned…no doubt! And my approach has become are you smarter now than you were when school started? If so, then it’s all good!!!
Tomorrow morning, we will be heading to the doctor. Zine’s enzymes must be checked again. We are hoping those liver enzymes have come down. There has not been one day this week that someone has not had a medical appointment! They have definitely kept me busy this week!
So…although life is better not in the hospital…I’m not sure we have settled in! I am beginning to wonder if we will ever settle?
