Update on Ani’s Health

It’s been almost four months since we started getting diagnoses for Ani. At that point, she was sleeping up to 18 hours a day and worn out all the time. She was so incredibly sick.

What’s wrong with her: Ani has Ehlers-Danlos Syndrome, POTS, Fibromyalgia, and Celiac Disease.

What we’re doing to treat her: Every day Ani takes a beta blocker to help control the racing heart from the POTS. She did an experiment trying various POTS remedies and found that Nuun electrolyte tablets work best for her. She takes one in the morning and one in the evening now. She takes Lyrica for the Fibro pain. Recently she had to up her dose because the drilling pain that she now knows is from the fibro started up again. Hopefully, we’ll be able to decrease it back down in a couple weeks. She is careful with her range of motion to avoid EDS pain and, of course, she eats no gluten so the Celiac is usually a non-issue. She has been going to physical therapy for her neck (side effect of the EDS) and that pain has decreased a whole lot, enough that she no longer takes Aleve regularly. She is getting better at watching her body temperature (she has trouble regulating her body temperature because of the general dysautonomia that includes the POTS).

So how is she doing?

Amazing.

She’s still so incredibly sick, but when I think of how my daughter was just a few short months ago, the difference is incredible and so encouraging. I’ll be honest. I did not think she would survive. She was getting worse and worse. I thought she was going to die. She thought she was going to die. It was bad.

In March, a friend asked if they could dedicate their monthly fast to Ani’s health. Her whole family fasted for Ani. She encouraged others to do the same. I will always believe that changed everything for my daughter. It was within days that we started getting answers. We found doctors willing to help instead of brushing her off. We got medication, we got a treatment plan to help her, we got diagnoses.

She still has bad days. Some are very, very bad. On the Fourth of July, we had a church picnic. It was hot. We live in Texas, after all. She got overheated. Getting overheated means she got sick. Very sick. She slept most of the afternoon/evening that day. The big difference is, though, that the next morning she got up and was functional. She didn’t need three days to recover. That is a miracle. She still gets exhausted relatively easily, too, and she never feels truly good. But it’s livable.

Over the last week, she spent several days being a substitute nanny for three little girls and still did her normal program directing at taekwondo and also babysat a little girl Friday night. These are things she literally couldn’t have done just a few months ago (though I think she might sleep most of today since she was so exhausted by last night). She’s got plans to go see Spider-Man with one friend and Wonder Woman with some other friends. She’s training at taekwondo and working toward her second degree black belt again. She’s actually being able to be a human. Most importantly, she has hope for a future. A sometimes painful, taking medication for life future, but still a wonderful, full, happy future.

Back At It, Also We Had a Good Spring Break

Fritz, upon discovering today is the first day of spring, wondered just why we had spring break last week before spring started. Good question. Of course, living in south Texas the temperature has been quite spring-like since, well, January.

Last week was fun. Cameron went on Trek. This is a thing Mormon kids do to simulated being pioneers. They wore pioneer clothes (plus tennis shoes because we’re not that crazy). Slept outside. Cooked some of their meals on a fire. Were put in groups called families with a Ma and Pa. Pulled handcarts (and in the case of Cameron’s family, also pulled the chariot of their “sister” in a wheelchair). Got sunburned. Walked 26.6 miles over three days. Sang 99 Cartons of Milk on the Wall. Twice. And then sang 499 Cartons of Milk on the Wall. He absolutely loved it.

Back At It, Also We Had a Good Spring Break

Wednesday Ani saw her rheumatologist and got some diagnoses and a treatment plan that is already helping a little bit.

Friday I took the kids to see Beauty and the Beast. We loved it. It was absolutely perfect. We’ll definitely be buying it when it is released on DVD (or, rather, digitally from Amazon because that’s what we do).

Back At It, Also We Had a Good Spring Break

It’s been a year since we started redecorating Ani’s room. We’ve still got a few touch-ups left to do, but now we’re ready to move on to Cameron’s and the boys’ rooms. Saturday we went and got paint chips from Home Depot in pink (Cameron), blue (Cameron and Fritz), and yellow (Adrian) to choose from. Cameron and Fritz separately picked the exact same shade of blue.

Spring Break also included lots of reading (I’ve read 13 books so far in March), youtube videos, video game playing, and Cameron working at spring break camp at taekwondo after he returned from Trek.

Today we went back to school and everything went great. Everyone focused and worked hard and we even got all of our all together work done (rarely does that all get done in one day). Ten more weeks of school and then we’re off for the summer!

My Cleaning Plan

The other day I was talking to my best friend on the phone and mentioned that the room I was in was echoing because I had taken all the furniture out of it. She asked why and I explained that I do that every month so I can sweep and mop under everything. She said I have it way more together than she does. This is not true, however. She’s a single working mom and still somehow manages to feed her kids and get them to school on time and everything. I, however, am slightly neurotic and inherited a love of marking things off lists from my mother and so I have, over time, developed a cleaning plan that works really well for me.

I took the ideas I use from FlyLady, Side-Tracked Home Executives, and some other random cleaning gurus. For a long time I wrote my to do’s out on paper (and even tried the SHE index card system – which did not work for me at all). Now I use some apps on my phone. I use the calendar that came with my iPhone for scheduling, Wunderlist for my to do list, and MealBoard for menu planning, grocery list, and pantry inventory.

I have things I do every day, every week, and recurring on some other schedule. They are all entered into Wunderlist so they show up each day for me automatically. Some things are somewhat silly to be listed as a to do, but, as I said, I really like checking things off my list so I leave them. As things come up (like if a kid is doing a multi-day thing for Scouts), I’ll add it to my to do list temporarily. If I come up with something extra to do (for example, reviewing a book I have finished), I add it as needed. Below are my regularly scheduled chores.

Daily:
*Pray (I’m great with bedtime prayers, not so much with morning so this reminds me)
*Upstairs Toilet (either wipe it down with a Clorox wipe or use the brush inside the bowl)
*Downstairs Toilet
*Vitamins (I put them out on a shelf so people can pick theirs up and take them any time)
*Read Scriptures (currently reading the Doctrine and Covenants and using a verse by verse book to help with studying)
*Add to Letter (I write to my aunt every Wednesday, but if I write it all at once I forget a lot of things so I add things daily)
*Journal
*Spot Clean Cage (guinea pigs – pick up their poop)
*Family Scriptures
*Picture of the Day (I’ve taken a picture each day since 2011, plus in 2009)
*P365 Page (add the picture of the day to a digital scrapbook page)
*Dishes
*Finances (yes, I update our finances every day – I actually enjoy it)
*Indexing (I do one batch a day)
*PokeWalk (with Fritz)
*Wash Critter Kitchen (sugar gliders are horribly messy when they eat so we have a plastic container with their food dish in their cage)
*Critter Food 1/2/3 (we always have three mixes of food cubes for the gliders in the freezer and each morning I take one out, put it in a dish, and stick it in the refrigerator so it’s thawed by evening when they get fed)
*Brush Lola (she is such a shedder!)
*Notebook (I check the next day’s meals and schedule and add them to the to do list, noting if I will need to take any meat out to thaw or make bread or whatever in the morning)
*Pinterest (I’m always looking for gluten and dairy free recipes)

Sundays
*Cut chicken (I have chicken issues so I get all the gross stuff cut off at one time and freeze single breasts in ziploc baggies so they are ready to be used as needed; I cut the chicken on Sundays because I grocery shop Friday and Monday is trash day and if the nasty bits sit in the garage in the Texas heat longer than a day it is really gross)
*Sacrament (because of the Celiac we have to bring crackers for taking the Sacrament at church)
*Write to Steven (he’s a friend of Ani’s serving a mission right now)
*FHE (because of the big kids’ work schedule and Jamie taking taekwondo on Monday evenings, we do Family Home Evening on Sundays)
*Church
*Skype Jamie’s Mum

Mondays
*Sweep Living Room
*Trash (Cam) (taking out the trash is Cameron’s assigned job)
*Cans (once they pick the trash up, we have to bring the cans back in)

Tuesdays
*Counters
*Sweep Kitchen
*Taekwondo (I only add taekwondo to the list when I’ll be going there – otherwise it would be on there almost daily)

Wednesdays
*Bathe Lola (Cam) (another of his assigned jobs)
*Refrigerator (clean out the leftovers we didn’t eat)
*Sweep Stairs
*Print Letter to Aunt Betty
*Take Cameron to Work (he works Wednesdays, but Ani doesn’t)

Thursdays
*Catalog Food (I go through our cabinets and make sure my food inventory in MealBoard is correct)
*Menus (I plan a week at a time and grocery shop on Friday morning)
*Trash (Cam)
*Cans
*Taekwondo
*Mail Aunt Betty Letter
*Sweep Dining Room

Fridays
*Guinea Pig Cage (I put the girls in their pen on the floor and wash their bedding and clean the coroplast)
*Plan FHE
*Prepare for Sunday School
*Sweep Craft Room

Saturdays
*Prepare for Relief Society (if Sunday will be from the Gordon B. Hinckley manual or Teachings for Our Times)
*Pills (refill the pill containers to make it easy to put them out each morning)

Every 4 Weeks
*Mop in addition to sweep (when I do that I remove all furniture possible from the room; when I do the counters that week I remove everything as well; when I do the dining room I also wash the table)
*Wash Sheets, Dry Sheets, Make Beds

Every 24 Weeks
*Wash and Dry Mattress Pads (when I do the sheets)

First of the Month
*Cabinets (wash their doors and also the center island)
*Change Welcome Sign (my sister gave me a felt sign years ago and each month has a different little picture to go on it)
*Lego Calendar (I have a perpetual Lego calendar that I happily rearrange every month)
*Clean Dishwasher
*Clean Disposal
*Clean Washing Machine (I get little tablets for cleaning those three things each month)
*Lola’s Heartworm Medicine

If I don’t get around to something that is not a daily recurring chore, I just let it go to the next day. For example, I really hate washing the cabinets every month. It’s probably my least favorite chore (well, other than sweeping and mopping the stairs – I HATE that one). I finally got that one done on the 4th even though it was originally assigned on the 1st. Wunderlist puts overdue tasks at the top of my daily list in red so it annoys me until I do it. I never let things go way too long, mainly because I absolutely love ending a day with the entire “Today” list empty. That’s another thing my best friend recently noted about me. I feel the most productive when I’ve got a clean house and have marked things off my to do list. (But I’ll be honest… some days I don’t do much other than school, walk, and read because sometimes you just need a day off.)

Currently, I have an added recurring daily chore of plan school. As long as I do a little each day I get the next year’s plan done before the end of the current school year.

I check our laundry basket daily to see if laundry needs to be done. Usually that happens twice a week (and I add Wash Clothes, Dry Clothes, Fold Clothes, and Put Away Clothes to the list those days because marking off four things is way more awesome than just one). Towels get washed as needed, usually every week and a half or so. Ani and Cameron do their own laundry.

Dishes get washed a minimum of once a day, generally at night (so they get put away, generally by Fritz and Adrian, in the morning). Often the dishwasher needs to be run twice or even three times during the day and that gets done as needed.

I walk 10,000 steps at a minimum each day. Regular movement around the house is about 3500 steps. The PokeWalk adds a couple thousand. Taekwondo days also add a couple thousand. I have a path I walk around the main floor of our house. It’s an open floor plan so I make a convoluted circle of just over 100 steps over and over. It would be boring to just walk around and around like that so I read while I walk. It is one reason why I read so much. I read while I exercise. I also do a little picking up as I walk. Each time around I grab something in a place that doesn’t belong and as I make the circle I put it where it goes (or on the stairs if it belongs upstairs). That kills two (really three) birds with one stone.

I don’t put school on the to do list, but of course that gets done every morning. We try our best not to run into the afternoon, but on taekwondo days sometimes that is unavoidable.

My kids are big enough that on occasion I assign a random chore to one of them. Fritz is getting really good at sweeping the craft room (it’s the easiest to sweep since it’s small and pretty much empty). I am more likely to assign stuff to them when I’ve been busy doing other stuff and running out of time in the day.

Deeper cleaning projects I do as the urge strikes. Like right now I really want to clean the shelves in the craft room (again), but I haven’t quite gotten around to it. A while back I decided to use a toothbrush to clean the dirt-catching crevices in the cabinet doors. I did one door per day. When I get the urge to do a deep cleaning project, I add it to my daily to do list temporarily. I almost never do any major cleaning on the weekends (unless I feel like it). Weekends are for relaxation and church for me.

It really doesn’t take long to complete all the things I’ve assigned myself. Some of them literally take seconds, but need to be done every day to keep our house running smoothly. I am much more calm and am a much better wife and mother when my house is straight. I hate clutter. Because of that, it is imperative for me to have a “company-ready” house and my cleaning plan helps make that happen.

I’ve found that getting as much done as possible early is best for me. I am a morning person naturally. I have also found that if I do not get on the computer before a good number of my daily to do’s are done things also go better. It’s Newton’s Law about objects in motion staying in motion. As soon as I end up at rest (on the computer) I’m somehow stuck and have trouble getting moving again (the 250 step per hour reminder on my FitBit helps with that, though). Really, if things aren’t done by about 4, they probably aren’t getting done since I’m really tired by then.

The most important thing I have learned through tweaking and adjusting my plan is it will only work if it is customized to me. It’s why I had to take ideas from others, but still make it mine because me and my house are unique. So that is my advice to others who want to make a cleaning plan: Don’t just copy someone else. Make it your own. And, most importantly, make it something that you will do, is realistic for you, and meets your goals or you will not succeed.

The Corn Became an Elephant

Several months ago Ani’s friend Steven asked if Cameron liked corn. And then he showed up at our house with this slightly scary and totally bizarre giant ear of corn.

The Corn Became an Elephant

He had seen it on the side of the road put out with the trash, stopped, took it home, fix a tear it had, and then, for some reason that I still don’t actually know, gave it to us.

The Corn Became an Elephant

The corn amused us for a long time. We left it in my parents’ room when they came to visit and didn’t mention it to them just to see how long it would take for them to say something. It was also in that room when Tony and Roo came to visit because it seemed like something that should be there to greet them. It hung out by the piano for a while, too.

The Corn Became an Elephant

But, with a white elephant gift exchange planned for the last Wednesday night activity before Christmas, we decided it was time to let the corn go to a new home.

The Corn Became an Elephant

The girl who got it was delighted. She laughed and laughed. Her younger sister loved it so much, she said she wanted it for Christmas. And then she laid on it like it was a huge pillow for the rest of the evening.

The Corn Became an Elephant

As silly and slightly scary as that corn is, we did get quite a bit of enjoyment from it and now even more people are enjoying it. I guess it’s really true what they say about one man’s trash being another man’s treasure.

Homeless Packs

The first Sunday of this month I taught all the young women (ages 12-18) at church. This month’s Come Follow Me lessons are on Spiritual and Temporal Self-Reliance. I chose to give the lesson on What is the Lord’s way for providing for the poor and needy.

Homeless Packs

We talked about refugees, sharing the statistics I’ve collected in my research (and fact checking) and showing a couple church videos. (Invite a Refugee to Dinner and Refuge from the Storm) We talked about ways we can help the refugees and immigrants in our city. We talked about how everyone can be poor and needy in some way and how even just a smile can make a difference. We talked about the homeless population in our city. And we made homeless packs to keep in their parents’ cars and give out when they see someone homeless when they are out and about. Ani and I each made a pack and within days had given both of them out.

Homeless Packs

Each pack is in a gallon ziploc. They contain a bottle of water, a pair of socks, small pack of tissues, travel toothbrush and toothpaste, hand sanitizer, three individually wrapped wet wipes, sample size shampoo, conditioner, and lotion, bar of soap, package of nuts and two fruit by the foot in a sandwich size ziploc, and a dozen Wint-o-Green Lifesavers in a snack size ziploc. I hope those 24 homeless packs have been useful to the few Starfish* we could help with them and that has helped the young women understand a little better what they can do to provide for the poor and needy.

Homeless Packs

*Starfish comes from the story about the child throwing the starfish back into the ocean and making a difference to the one. When helping everyone seems overwhelming, the starfish story reminds us that helping even just one is better than none.

Young Womanhood Medallion

I received my first Young Womanhood medallion when I completed the old Personal Progress program back when I was a Laurel. Unfortunately, I lost that necklace years ago. On Sunday I was presented with a new Young Womanhood medallion for completing the current Personal Progress program. Since I am the Beehive Adviser, I had fewer value experience requirements, but I had to serve in Young Women for at least one year. I completed that year the end of August and I completed my last project last week. I love the Personal Progress program!
Young Womanhood Medallion