Taking care of a child who has a special health care need is a very important and complex job.
My daughter has multiple diagnoses—ranging from mental illness to a neuromuscular disease to hypothyroidism. She takes medicine 5 times a day and has respiratory therapy twice a day. If she gets a virus or any other childhood disease, that schedule will double.
I am often asked “How do you remember everything?”
There is no way I could remember everything without a way to organize and keep track of everything. Here are the things I do to help me keep on schedule.
I cannot stress how important it is to get a 7-day medicine organizer box.
Before I used one, I would give her the scheduled medicine and then not remember if I had or not. By using the organizer, I never have this problem. If the box is empty, I know I gave her the medication. Every Sunday, I sit down and fill the organizer for the week.
Another very important part of this process is setting alarms.
You can use a watch, but I find it is better to use a cell phone so you can set multiple alarms.
I set and label an alarm for every time my daughter is due to take a medication. I also use alarms for myself and my other children. I label each alarm so I know who gets what and when.
My daughter also needs respiratory therapies twice a day. I set an alarm for these daily preventative sessions. They have become part of her morning and evening routine, which has helped.
It is when she becomes ill that it can get confusing. If she begins to have any signs of a respiratory illness, those therapies increase to every 4 hours. This is when a chart is very important.
I have a dry erase board especially for this. I make a grid and fill in the times and therapies she gets and when the next ones are due.
Being her parent sometimes feels like I am a nurse so, things must be organized.
It is crucial that her medications and treatments are given properly and on time. Find more helpful information in family support.
Finding durable medical equipment and transportation can be a challenge. But there are organizations and businesses that can help.