Tuesday, September 28, 2010
Wednesday, September 22, 2010
Tuesday, September 21, 2010
He still is having some issues with seizures. They removed one of the seizure meds since they thought it was causing his platelets to drop however he's having some issues. At times, he has some terrible writhing type movements-looks very much like Michael J. Fox at times moving all over. His head moves so much it's hard to keep the nasal cannula on. He had some horrible cluster type seizures Sunday evening and again on Monday evening but seems better tonight. I spoke with his neurologist yesterday and he had me add one pill of his other seizure medicine to help Dear Son out. Today, we took him over to another hospital for a blood test.
I've been pretty tired keeping up with this new schedule. I am doing nebulizer treatments and chest pt four times a day, along with leg and feet massages for edema and doing his hand splint therapy to keep his wrists in alignment. All of this on top of meds every six hours, plus feeding, diaper changes, positioning changes, general grooming and moving him back and forth from the living room to the bedroom have me bushed! I don't think I sat down for a few hours between all of this.
I also have medical paperwork to do. I completed the paperwork for a Guardianship for him the week prior to his hospitalization and once the doctor returns the form, I can go to the courthouse for a date. It is recommended that a parent seek a guardianship for a person once they turn 18 so they can continue to make medical and financial decisions for them. I think this past year or so has really taken it's toll on me a bit. The lack of sleep really makes it more challenging to do all of these tasks. I typically get two to four days a month of uninterrupted sleep when his Dad takes him for the night and I am always amazed at how much better I feel and how much more I can get done on a full nights sleep.
Dear Son looks good, other than when he's having seizures or moving with all of the writhing type movements. One thing that seems better than previous pneumonias is all of the secretions. He doesn't seem to have any really. The antibiotic seems to be working so I am thankful for that.
Update: I just received a call from Dear Son's personal nurse at school. She inquired about him and offered to do any necessary treatments he needed. I hadn't thought about that option actually but she volunteered to do nebulizer treatments, oxygen, etc. I took Dear Son off his oxygen last night since he had pulled it off and his oxygen saturation was fine. He was on 1/2 liter all day yesterday. I think having school do a chest pt and nebulizer treatment would be great. I also talked to them about doing his splint therapy (these are arm splints to keep his wrists in a neutral position); the optimum schedule is three times a day and I suggested having him wear his splints to and from school. Each way is a 30 minute trip and that way, I'd only have to do one more treatment at home, at least on school days. I'll talk to the doctor's office on Friday about him returning to school next week. If it's a go, I think it will be great to have some assistance. To help out, I'll probably create a checklist to make things easier.
Friday, September 17, 2010
Tuesday, September 14, 2010
Monday, September 13, 2010
Friday, September 10, 2010
- Have a vision for your house- For me, I want to walk in every day to a clean, organized and beautiful home. That is peaceful to me.
- Know what you don't want- I don't like things on flat surfaces. It drives me crazy to have something in the sink and then you can't turn on the water until you move that item. Or to have something on the kitchen table and then you have to move it to eat. Who wants to live like that?
- Learn how to be a great housekeeper-Learn tips and tricks to clean more efficiently. I frequently read books and am always learning new ways to do things. Doing this, keeps me motivated. Also, recently I was talking to my friend's housekeeper and asked her about how they clean baseboards and she shared her tips with me. Don't be afraid to ask professionals or even friends whose homes you admire for tips.
- Get a cleaning schedule-If you really want to get it done fast, you have to have a schedule. Think of it like MapQuest, where they give you two options-do you want the shortest time or the shortest distance (sometimes that takes you longer). For housekeeping, you want the shortest amount of time and having a schedule allows you to be more efficient, thus saving you the maximum amount of time. In my book, cleaning is a lot like exercising, I am always happier when I am done.
- Get tools to make the job easier -For example, I love my Eureka Enviro Steam Mop-it does a great job, is non toxic and gets the floors really clean. No more scrub mop and bucket of water!
- Get tools that inspire you-I have a pretty broom that's black and white. There are so many options today, it doesn't have to be boring.
- Cut the clutter-Less really is more when it comes to cleaning. Pick a few things and get rid of the rest. As a general rule, I try to have no more than three/four things on a table. Makes it much easier to dust.
- Get a maid-If you don't want to do it yourself, hire someone. You don't get extra points for doing it yourself.
Guest bedroom in my former home.
My cleaning schedule consists of three basic parts: daily maintenance, focus (light) cleaning and zone (deep) cleaning. I start each day with my "Daily Routine/Maintenance". This is the first sheet in my home planning notebook that lists the order of the day, everything from my morning, afternoon and evening routines, along with cleaning tasks as well as my "to do" items for the day. Included in my morning routine are basic maintenance tasks related to housekeeping. These include: unloading the dishwasher, emptying trash, doing a load of laundry, making the beds and touching up the bathroom. I keep these "Daily Routine" forms in my 'Home" (Home Organization Manual for Efficiency-This is my own Dream Organizers product.) planning notebook (kind of like a Franklin Planner) and start a new form each day. I have all of my routines listed out and follow the tasks in the same order each day. This notebook sits on my desk and my entire day flows from this book.
Powder room in my former home. I had to laugh when I saw this picture-who uses bar soap or those room deodorizers anymore.
Sunday, September 05, 2010
Over the few weeks or so, I had been telling Dear Son stories about himself to keep his spirits up. Since his hospitalization last November, he has lost the ability to move his feet and legs and can no longer move his hands. I could no longer tell him that he would get stronger as I had always done, to reinforce the goals of physical therapy. I had to retrain myself a bit to not say those things since I know deep down that those skills are not coming back. At some point, in a progressive illness, the illness begins to win.
I’d talk about his good sense of humor and how when he was small, we’d get into the elevator at Big City Children’s Rehab Hopsital and Dear Son would start laughing; he loved elevators. The rest of the people in the elevator didn’t know it then, but soon everyone would be laughing. Dear Son would squeal when he got into the elevator and start laughing. He’d laugh so hard as the elevator went up that soon everyone in the elevator would start laughing. He had one of those laughs that made everyone laugh. I told him the story and then would comment that making everyone laugh was something that was good about him and that not everyone was like that. Or I’ll tell him stories about daycare. Dear Son would laugh every time the daycare own told a child they couldn’t do something. She’d say it in her thick accent and Dear Son would laugh because someone was getting in trouble, which he loved. The more she talked the harder he laughed which made it difficult to get the other kids to listen. Then she’d tell Dear Son to stop laughing which made him laugh harder. Soon she started laughing and soon everyone was laughing at the daycare. That’s the kind of kid he was.
Dear Son at school, preparing to make dog treats.
As his deterioration has progressed, I began to worry about Dear Son and how that must feel when your body doesn’t work like it used to. As a result, I’d focus on his personality or his smile. I told him that when he smiles, he lights up a room and that other people always notice his smile. I’d tell him that not everyone is like that and that is something special that is unique to him. He’d listen to me and I could tell he was thinking about it. I’d remind him that I always ask to see his face when I talk to him so I can see his smile, because it’s beautiful. Sometimes he has Mickey Mouse in front of his face when he’s lying down and I can’t see his face. (Since he can’t speak, I need to see his face to see if something is wrong.) What I wanted to do was to keep Dear Son’s spirits up and help him feel good about himself.
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