Loved ones visit from Hawaii and positive changes ensue

There is so much about Jonika and Ollie’s visit that was wonderful. Jonika was helpful, cooking, cleaning, instigating organization for Andy in his bathroom, his room, and in his schoolwork. She even shared her knowledge from two years of weekly therapy to improve our family dynamics. And she also visited with friends and family.

Even Ollie (18 months) likes to help – he likes to shake my food and even pour it (but I can only let him ‘pour’ empty ones), and he likes to help with laundry, and he sweeps. It was great to watch him learn. I was packing up some things to give away that had to fit in the box a specific way. He would watch me put a piece in, then try himself and hand me the next one so he could learn how it fit correctly. He also loves to bounce on beds, swing, and rock in the rocking chair.

in the rocking chair with Granny M

And it was great that he knows some American Sign Language, especially now that I am learning some too. He and I communicate in facial expressions and hand movements, just like communication is done in ASL. When we visited Hawaii when he was only 3 months old, I was still verbal with only vowel sounds and that was all he could do too.

So far, no problem communicating with this young human although his verbal skills are increasing and all I can do now is a monotone sound.

Toddlers also bring home germs. Ollie threw up Thursday morning and by Saturday Andy, Stan, and Jonika were all sick. I had to go into mom mode and clean up Andy’s bed linens so I was exposed.

Andy convelescing on the couch watching the Olympics while Stan rallies himself to entertain Ollie

And sure enough, 48 hours after exposure I got the bug. But I was ready with my extension tube on my Mic-key button and an extra large plastic cup next to me all night. When I woke up with my button hopping up and down and I got that about to throw up feeling, I opened the tube into the cup. Even laying on bed it exploded in bursts into the cup. When I got up, I started with Gatorade and when that stayed down I did my meds. For new readers, you won’t remember my norovirus when I was still working. I could not stop vomiting and it would get stuck in my esophagus, burning away, until I could cough assist it out. That was only resolved with hospitalization. It was miserable and my esophogeal muscles work even less well now.

It was a snowy day, so Ollie got to go out and experience it for the first time. He was fine, walking around in wonder, until he fell and his hands got too cold. Then he cried and cried, and I think he was saying, “Take me back to Hawaii Mom!”

I had some more Gatorade and went back to bed. I slept a couple hours, then did cough assist and suction and had some more Gatorade. I kept the extension tube connected so I can monitor what comes out while I’m awake. By noon, I was able to tolerate one box of food.

My friend Alice stopped by to bring me some slipper socks, perfect for a snowy day.

In addition to extra family and friend visits during their stay (which were wonderful), Jonika had recommendations for our interactions with Andy. She has the unique insight of a 30-something adult, who is now a mom, and who spent four years being parented by us. One thing that really hit home was that we have to be role models, including cleaning up our cluttered areas if we expect Andy to keep his things uncluttered. So I worked on my office, which had been on my to do list for a long time. It is something that I have to do before we can do taxes. But this time, I am purging big time and I ordered a new rug to help motivate me. Another thing is to help Andy with time management, but only if wants help, and that has already helped more than once.

Jonika and Ollie left to fly back to Hawaii early on Wednesday morning. All three of us will miss them greatly.

Clutter and Taxes and Time, oh my!

A few weeks ago my niece, Ellie, who is in med school, told me, after reading my blog post where I mentioned my son’s addiction to his cell phone, about an app she uses to ignore her phone so she can focus on her studies. She thought it might help her cousin Andy. The app is Forest and is available for android and iPhone. The way it works is you pick how long you want to focus: 20 minutes or less you can plant a bush, for 25 minutes or greater you can plant a tree. If you leave the app before your time is up, then what you planted dies. Plus you get points for each tree or bush that lives, and when you get to 2500 points they will plant a real tree. Here is Thursday when I was working on taxes:

I downloaded and printed IRS Publication 502, Medical Expenses,which is 27 pages long. My husband gave me a hard time for not saving trees and I said but I am working on planting one!

I find the app very motivating for decluttering, cleaning, and doing other unsavory things like taxes. Unfortunately, Andy is not very motivated by it. Ellie told me, “don’t worry, he’ll figure it out”. I sure hope so and soon!

Speaking of that medical expenses publication, one particular item caught my eye. “You may be able to include in medical expenses the cost of lodging not provided in a hospital or similar institution. You can include the cost of such lodging while away from home if all of the following requirements are met. 

  1. The lodging is primarily for and essential to medical care. 
  2. The medical care is provided by a doctor in a licensed hospital or in a medical care facility related to, or the equivalent of, a licensed hospital.
  3. The lodging isn’t extravagant under the circumstances.
  4. There is no significant element of pleasure, recreation, or vacation in the travel away from the house.

The amount you include in medical expenses for lodging can’t be more than $50 for each night for each person.”

So the government wants to make sure you are going to the medical appointment only. Do not pass go. Do not have fun.

With Stan retired our income has lowered and our medical costs have risen. So now it actually makes sense for us to itemize medical expenses for our tax deduction. It’s more work but worth it.

My office has been terribly cluttered and I have always said someday I will organize it. Forest has helped me start. Now taxes have intervened but I will get back to the decluttering of my office. I can’t leave that for Stan and Andy after I am gone.

We don’t know how long I will have. Every ALS patient is different. Some can go on for 10 to 20 years, others get less than a year. So Forest came to me just in time. Thanks Ellie!