Saturday, September 24, 2016

Please Help Me To Smell the Bacon and Not to Eat It


What do you get when you put a one year old, a 4 year old, and a 7 year old in a 10x10 room for three hours with a toxic medical waste trashcan, an adjustable medical exam table equipped with stirrups, and a spiny doctors stool?

Easy it’s a CF Clinic visit with the Adams family!

Man I wish the punch line to that joke was funnier. I will have to keep thinking on a better closer for that one. I should probably work something into the punch line about the stirrups and the spiny doctors stool because the kids each feel the need to play with these at some point during the three hours in the room and each at the most awkward time possible.

I’ll be honest the appointments are mayhem, but also miraculous in many ways and we have an amazing support team of medical professionals who are sincere and capable.

Ruby was sounding good and growing well. She has a nice “curve” to her growth chart. She got lots of compliments on being Maelee’s twin.

We walked away with some weight loss for Orson since last visit. Not unexpected from the three week long battle with the stomach flu we had along with the rest of the state of Arizona in September. Stomach flu isn’t fun for anyone of course, but especially for someone who does enteral feeding. Poor guy, but he is on the upswing so away we go back to “two cans a night” and as much half and half as we can convince him to drink with his teeny tiny portioned meals and snacks (and yes we tried heavy whipping cream but that didn’t work).

Maelee was confirmed at this appointment with having asthma along with CF which isn’t uncommon and just requires some increase of diligence and awareness and medication changes. The thumbs down news is that she is on hospital watch again because she had poor scores on her lung function test along with having lungs that are “wheezy and coarse” sounding. The double thumbs down news is that her weight is also slightly down. It’s all interrelated with the lung function because if it takes more energy to breath more calories are burned just by breathing so your weight goes down and losing weight is bad news for lung function. It’s a relentless cycle of weight loss and lung function.  

She was prescribed a new calorie goal of 2,700 calories a day which seems like a fun thing to do, but it can get tedious and stressful with everyone is bothering you to eat and creates a unique kind of pressure opposite to what the world around you is pressuring you to do. Then there is the pressure in her mind of the potential of a IV antibiotic hospital stay. Which hasn’t happened to her yet but seems inevitable since this isn’t the first time she has had low lung function and been on hospital watch in the past year.

So our goal is to beef her up and clean her lungs out over the next month and then get re-tested to see how she does and if she will be admitted for the “CF clean out” along with IV antibiotics.

What am I doing to help her? We go on more walks and bike rides to get her lungs pumping since ironically while it burns calories its also the best way to have healthy lungs, exercise I mean. I am also taking breakfast to a whole new level and trying to be even more involved (what I really mean is I’m super bossy) with after school snacks and dinners packed with a caloric punch. While my favorite job as a mother is the Chief Encouraging Officer I do get a little tired of smelling all the bacon every morning and resisting the urge to also meet the 2,700 calorie goal right along with her (blast it all to the early holiday shipment of Danish Butter Cookies at Costco). And boy if I think I am at the grocery store and Costco a lot now I just think back to the last handful of Mom’s of teens with CF I met who have kids that are prescribed 10,000 calories a day to maintain weight. Oh yes that’s right the bacon party has only just begun.








Just a little snap shot of a brain storming grocery trip the day after our clinic visit. Getting ingredients for high calorie desserts and also some other stuff to hopefully healthily get calories as much as possible. Thank heavens that everyone in our house can have dairy. We would literally be up against a brick wall without the calories the kids get from dairy!!!!!!

Sunday, September 18, 2016

The Closest We Get to Politics

If any of my kids become political science majors it will not be from any influence I may have bestowed upon them. But once and a while we have conversations like this.

Monday, September 12, 2016

My "Konvert" Journey


I am typically a fiction reader and not a self help book reader but this book, "The Life Changing Magic of Tidying Up," came on respected friend recommendation so I gave it a shot. I ended up being so happy that I read Marie Kondo’s book! I feel it is safe to say I am a “Konvert” to her methods. Some of her ideas worked amazingly well for me, and some didn’t work with my lifestyle. But the overall message of simply treating every object in my home with gratitude and surrounding myself with things I love and think are beautiful has been a useful compass for me.


I started as instructed with my own clothes to get honed in with my ability to know what “sparked joy” and what did not. Once I got going it was amazing what I got rid of. I ended up completely emptying out my closet (don’t be too impressed it is a pretty tiny closet) and have nothing I wear hanging on a hanger anymore. It is all in my dresser drawers (except 3 jackets/coats that are laying folded in a bin) folded as precisely as can be (I kind of get a kick out of doing it the Marie Kondo way now). Every week when I do laundry I know exactly where to put everything that’s mine and have nothing hanging out or without a designated place which in the past wasn’t the case. I feel like my own possessions are nicely in order. I also feel like I know better my sense of style which in all honesty was often guided by what I found for super cheap when I happened to have some money to buy clothes. Now I feel like I know better what I feel good in and what I love to wear.

When it came to the other steps in the Kon Marie process I would often hit stumbling blocks because I share my home with five other people. But as I focused on my own possessions and my own space I found that I could really create orderly and enjoyable spaces that I didn’t have for myself before.

Marie Kondo emphasizes doing one massive clean out correctly once and not having to ever do it again – which I think is a fantastic concept – but with a family that is ebbing and flowing like mine is at this time it isn’t realistic to think that I will be able to do that with success. I can and did however throw away and organize and donate sacks and sacks of items. My kids closets for example which used to be filled with randomness are now completely empty, literally except a few hanging clothes. The kids love it because it is another space for them to use to read and play in and I love it because it looks a million times better than it did.

This book appealed to me because I have been trying to solve the puzzle of organization and storage in my home for the past 10 years with increasing speed and urgency as each of my four kids have been born into the home we thought would only hold one or two kids at most. I have consistently attempted to make our space work for our family and really feel like I have made a big difference through my own efforts, but having this book as encouragement and inspiration helped me think through the process differently than I had before creating a new level of success.  

I wasn't sure if I would be able to find a picture of a room to model mine after but when I saw this one I knew it was it! I found the picture of the room I wanted to draw inspiration from in the book, “Style Me Vintage Home,” by Keeley Harris.




I loved the colors and the comfort in the picture and although its just a snapshot of a corner of a room I am inspired by the details. The rag rug, the corner of the brick fireplace, the amazing wallpaper. The whole thing is amazing, I love it!

One thing that came from my implementation of the ideas in the book that I did not anticipate was what is happening to my front room. I have never been afraid to paint crazy colors and murals on my walls, which I was always very proud of before, but as I was going through the Kon Marie method in my home (and also figuring out what I really loved in my heart and mind) I suddenly wanted to cover up my dizzying colors and schemes and round things out. My husband and kids I think were slightly alarmed when I painted over everything. My kids all told me that they missed my tree mural, which I think I will re-do now since they all have remarked how disappointed they are that its gone (who knew they were so attached to it? Not me!). It is taking me a while to bring to pass the makeover in the front room, but I am really liking it so far. It’s funny though because since I have painted I don’t feel like we ever go into that room anymore, which is really weird because it’s a large chunk of our living space. I think it is because it’s not finished yet and I don’t think it feels right anymore to anyone.

Honestly I loved the idea of throwing myself into this process to benefit not only my home but also my own mind and heart. I felt a little like the character Julia Roberts played in the movie “Runaway Bride” when she try’s all the different eggs to see which kind she really likes and not just because they were the eggs her boyfriend at the time liked. It was a clarifying process for me that helped me see in regards to my own possessions what I derived joy from and what I had impulsively obtained or had grown apart from. I do feel like I have gained a better focus in my life. I am still not done. I am not sure how long it will take me. Marie Kondo says the average amount of time it takes is 6 months and I started in June so I still have three months left to hit the average. In the meantime I will press forward and enjoy the benefits of what has already happened from my efforts and patiently try to complete the rest. The following quotes from the books are some of my favorites.

Attachment to the past and fears concerning the future not only govern the way you select the things you own but also represent the criteria by which you make choices in every aspect of your life, including your relationships with people and your job.” – Marie Kondo

“The process of facing and selecting our possessions can be quite painful. It forces us to confront our imperfections and inadequacies and the foolish choices we made in the past.” - Marie Kondo

“To truly cherish the things that are important to you, you must first discard those that have outlived their purpose. And if you no longer need them, then that is neither wasteful nor shameful. Can you truthfully say that you treasure something buried so deeply in a cupboard or drawer that you have forgotten its existence?” – Marie Kondo

“The inside of a house or apartment after decluttering has much in common with a Shinto shrine... a place where there are no unnecessary things, and our thoughts become clear.” –Marie Kondo