Salted Dill Lunchbox Rounds

Five minutes before she headed out the door today, Christa remember the lunch menu was not one of her favorites.  It’s grocery day here, which means my fridge is nearly bare, and we’re out of bread.  A cold lunch that would actually meet her calorie needs wasn’t looking very promising.  But then I noticed the little container of leftover cheese spread from the weekend.  It was to die for with Buttery Ritz crackers, and I thought it might pair well with ham in a wrap- so we did a little test run…The results were amazing.  I’m pretty sure we have a new found cold lunch favorite!image

Rolled into wraps for cold lunches or cut into appetizer rounds for tailgating, this recipe is versatile.  Layer on the the cream cheese spread a little heavier to beef up that calorie count, cut it back for the rest of the family!  I think you will love it however you spread it.

1 8 oz brick of cream cheese softened

1 stick of real butter, room temperature

1 T + 1 tsp dried dill

1 tsp onion salt

1 tsp garlic pwd

1 tsp Siracha sauce

Mix the butter & cream cheese in their softened state until smooth.  Add seasonings and Siracha. It’s ready to spread right away, or refrigerate overnight for extra flavor.  Spread a large flour tortilla with the cream cheese mixture.  Layer on sliced ham & add shredded cheese if desired.  I also would have added fresh lettuce for the lunch version if I would have had it on hand. Roll it up tightly and slice into halves or 1″ rounds.  Store in an airtight container.

https://www.etsy.com/listing/120163382/medical-binder-set-organizing-printables

I swore it would never happen to me, but occasionally I will find myself sitting at a clinic appointment wondering how long ago we finished an anabiotic, or “When did that cough start?”

Originally I kept all of Christa’s medical information organized in my laptop. This worked just fine but after a while I stopped going back to do the updates. Meds change, you go through surgeries, hospital stays and procedures, and pretty soon it all just seems like a blur.

For our home in general I love a countertop family binder. I keep our calendar, monthly menu, frequently referenced materials for my kids school and activities all filed away, plus a spot for discount cards & miscellaneous stuff that comes in the mail that I don’t want cluttering up my refrigerator.

While some of you may choose to do a medical binder altogether separate I think I am just going to add a spot in my home binder for medical. Look at these beautiful pages I found on Etsy!

image

 

https://www.etsy.com/listing/120163382/medical-binder-set-organizing-printables

There were a number of choices available on at sea, but this was my favorite for two reasons that jumped out at me.

1– I really liked that there was a symptom tracker page. Very helpful with CF symptoms that sometimes seem to come and go or when you’re trying to correlate them to something specific.

2– I thought it was a great feature that you could edit these pages on your computer. So for the information you want to be static you can go in and type it all in and then print to save to reference for years to come if need be.

Making masked treatments a bit easier

Back in the day when Bubbles the fish was a good pal of ours, I remember the little things that used to get on Christa’s nerves at treatment time…Straps that slipped and pulled her ears down, or worse pulled her hair, and having to give up your free hand to hold the neb equipment.  This meant no video games & even made reading hard.  Our solution was wearing a sun hat during nebulizer treatments.  She had a bright pink bucket hat with her name in felted letters which she wore for years.  I hope I have it saved in her box of childhood treasures, it was well loved by the time it was outgrown!

I stumbled upon something a little more inspired to pass onto all of you with mask-wearing children.  This mask strap is created by an Etsy seller who actually has Cystic Fibrosis herself.   Not only do I love the soft & smooth looking design of this contraption but I love it that we are able to support each other in so many ways.  Anyone who knows me, understands that I have a soft spot in my heart for Etsy.  As an Etsy shop owner myself I love the community and the premise of buying handcrafted items which will actually add value to your life. Click below to view this item or request one in your favorite fabric or color…

Plus the shop owner Khristina has graciously offered a discount to my blog readers! Simply use promo code “carrielux” at checkout to save 15% on one of your own!!

https://www.etsy.com/listing/102234754/lady-bug-strap-n-snap-size-mediu
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Creamy Tomato Tortellini Soup

creamy tomato tortellini soup

 

Thank you to Recipe Swagger for this delicious idea.  Two of our favorite things, tomato soup and Pasta, all wrapped into one steamy delicious dish.  I’m going to try this in the slow cooker today & freeze a few individual portions with extra cream for later!  Here is a link to the rest of the site- some amazing other good stuff there too!  http://recipeswagger.blogspot.com/2012/08/creamy-tomato-tortellini-soup.html

Creamy Tomato Tortellini Soup
Adapted from {Mrs. Schwartz’s Kitchen}

2 Tbl Olive Oil
2 tsp Minced Garlic
2-3 Tbl Sun Dried Tomatoes, chopped
1 tsp Onion Powder
1 Tbl Italian Seasoning
2 (10 3/4 oz) Cans of Condensed Tomato Soup
2 cups Half-and-half
2 cups Chicken Stock
1/2 tsp Salt
1/2 tsp Pepper
1 whole 9 Oz Package Of Cheese Filled Tortellini
1/2 cup Shredded Parmesan Cheese, for garnish

Directions
Saute garlic with the olive oil and sun dried tomatoes, onion powder, and Italian seasoning in a large stock pot over medium heat.
Add tomato soup, half and half, and chicken stock and bring to a simmer.
Once simmering, drop tortellini into the soup.
Cook according to the package directions.
Once tortellini are cooked, serve topped with Parmesan cheese.

High Calorie Singles for the freezer!

Just home from a long clinic day…  The clinic itself isn’t actually that long or tedious, we always enjoy seeing our providers, and the clinic is awesome; but the day overall including 5 hours on the road & a few mandatory stops in the city, do become a bit long.  I’ve been thinking over a few things we need to buckle down on and re-commit to on my drive.  Number one that I had to share with you all was a super idea that I must give credit elsewhere for.  Our dietitian Barb gave us this one, Thanks Barb!   I couldn’t believe I’d never thought of this specifically before, because I do this for single meals during harvest, and with left-overs…Barb said rather than try to make a tiny casserole full of the high fat ingredients, or somehow specialize Christa’s portion of the meal, some CF cooks like to make an entire high cal dish, then freeze individual portions for later use!  So today I’m going to make her a casserole, later this week a dessert and also later this week a  I can make it technically for the whole family, we’ll just have a little & portion the rest out for Christa to have later when the schedule for cooking is a bit pressed.

pyrex I decided to use the pyrex dishes like these to freeze in.  I have a mismatched assortment of these on hand already.  I’m not a fan of microwaving plastic, and I have a feeling that these items will be pulled out at the very last minute & need to go into the microwave.

The dish I’m going to freeze first for her is a creamy tomato & tortellini Soup.  It’ still frigid here, so a soup/pasta combo will be very appropriate for a quick meal.  I’ll post the recipe for you in “High cal Eats” too.  Here is a quick link in case you want it NOW :)

http://recipeswagger.blogspot.com/2012/08/creamy-tomato-tortellini-soup.html

Travel Treatment Kit

Before I even step into this post I feel it’s fair to say that just because this works for is, doesn’t mean your Dr. will love the idea. As with any changes in treatment plan be sure to discuss with your own individual clinic.  That said, this little kit has allowed Christa to participate in sleepovers & slumber parties just like any other pre -teen.  The bag has become prettier, but the contents are basically the same, I’ll walk you through what we pack for a one night stay away from home with a friend.

image image

This little bag was great purchase from my friend Pam, who is a “Thirty-One gifts” consultant.. I’m even going to link you to the bag in case you’re interested in getting one of your own.    It was called the timeless beauty bag.   https://www.mythirtyone.com/pamcox

The right side compartment is just for her brush, hair bands & tissues.

The small pouch in the center holds a good two days worth of enzymes- just in case, & then I pack her AM & PM Meds in those little dose zip top bags. Makes it easy for her to just grab the envelope & put it in her purse or pocket, especially if they’re going out to eat.

The center straps hold toothbrush, toothpaste & Chapstick- a must through any season in Iowa!

The pocket on the left holds her inhalers, aero chamber, nasal spray & PEP device.  Again I realize everyone’s items of need are different, but hers right now fit just perfectly!

When she was younger she said the girls at sleepovers would all help her count exhalations as she used her Acapella.  Then I think she went through a phase of taking her kit to a quiet room to  complete them.  Most of the time now her friends don’t think much of her pulling out the items to use whenever.

Treatment Area Organization

I wanted to share with you a little about how I organize our treatment area for Christa. It was very important to us that she be able to complete her respiratory treatments in a space that was central to our house so that she would always feel included in whatever was going on, but also have the things that motivated her to spend time there.  The reality is, treatments add up to a pretty good chunk of  her time, let’s make it quality time in several ways.  I also felt pretty strongly that it all look nice in the end and leave my great room feeling like a comfortable home versus a hospital room or treatment facility.
So this is what I came up with;  sure everyone’s space & needs are different, so this is just me sharing.   I’d love to see some other ideas you’ve all had to deal with this massive amount of stuff in creative ways!  I’ll give you a little tour through the photos…

treatment casetreatment area close

The bottom base is made out of two upcycled closet doors that I refinished. I built compartments like a horizontal bookcase using doubled 2×12′s to make the section walls. I needed spaces customized for each of the individual things that I store underneath. Her vest unit is on the left and is seated on a rolling slide out platform so that it can be a little closer to Christa as she is seated & roll back to store. The center two compartments have extra hidden space in the back where I store nebulized medications that don’t require refrigeration, extra nebulizer kits, tubing, Kleenex, etc. The two cute little totes you see you were just something from Target. The left one holds the clean pieces for the nebulizer kits ready to use. They have been boiled and dried thoroughly in. I keep them covered with a clean dish towel inside the tote. The right one holds the dirties ready to be washed and sanitized. I do a batch method which I feel saves me the most time, I usually have about 10 reusable kits open at any given time for her. The far right holds a few more supplies in the hidden back and upfront is a beautiful little garbage can for all those Kleenex we go through.
The small totes on the top are her nasal sprays and inhalers. And a box of Kleenex ready to use. The tiered basket on the left house is a good book to read a couple of family games, usually some cards, and her tablet and charger. The top holds her nebulizer and cord neatly. The unit is open in the back so the vest cord can go through the back to plug in.

In front of this set up, just out of view, is a big fluffy fur beanbag chair that she sits on most of the time. She can turn facing the platform under the fireplace if she wants to do written work there or if she turned the other way there is a coffee table directly behind her beanbag chair that she can use for games or writing also. Christa loves being close to the fireplace especially during the early morning treatments. I know not everyone is a fan of placing the TV on top of the fireplace but it seems to work for us and I’ve learned to not mind it there. I can still decorate a little on the edge.
When Christa was younger we used to use a rolling cart system. Basically the same concept but all this stuff was on a wooden cart on wheels and we would move it around from location to location depending on what she was doing at treatment time. As she’s grown older she’s decided this is her favorite spot to be so most of the time she’s stationary here.

Christa’s Top 3 Entertainment Apps for Treatment Time

In a perfect world, Christa would scamper off to put on her vest without so much as a reminder, begin her treatment regimen each morning and crack open her favorite book while I whipp up organic smoothies and free range scrambled eggs in the kitchen…Alas, my home is not the picture of this perfection.  It goes more like this…Alarms go off and coffee pot goes on, when the last of her sleeping in moments are up, I flip on Christa’s bedroom light & wake her.  She seems to hang onto that last minute before 6:30 like it’s a golden treasure.  We could win an award for the bedhead that is witnessed at our house, sometimes the kids stumble out of their rooms looking like the barbies from the bottom of their toy chest.   Christa is pretty good about initiating her treatments which thrills me!   Lately her motivator to get them going seems to be time spent with her tablet.

christa top 3 apps

 

So when I asked Christa if she’d like to share her favorite three game apps with you all, it only took her moments to compile the list.  I’m assuming this is a list that evolves pretty rapidly.  It seems like everyday I see a new app uploaded from our Amazon account, thank goodness so many of them are free!  I’ve never been a huge fan of time spent in front of a video game, but using them to pass the time through an otherwise boring event like treatments is a pretty good compromise for us.  So, here are her current favs:

#1- Flappy Bird

#2- Glass Tower

#3- Happy Street

She also loves to “kik” so if you use that app & would like to chat with her let us know below!

Chicken Enchilada Pie

I have had several versions of this recipe over the years.  Each has been loved and devoured but this is our favorite rendition.  I think you could substitute brands if necessary, but I’m going to list a couple items which I think are the best.  I’m sure it was originally made with enchilada sauce, but my substitution of Amy’s tomato soup here makes this very kid-friendly.

 

enchilada5 Azteca flour tortilla shells

1 can Amy organic tomato soup

1 bag shredded cheddar cheese

1 8z block of cream cheese

1 pkg carving board chicken (or appx 2 cups cooked chicken)

1 small can diced green chilies

1 cup corn

1 cup black beans

*sour cream & avocado for garnish

Melt cream cheese until soft in a medium sized microwavable bowl.  Cut chicken into small pieces, and stir into cream cheese.  Add it chilies, corn & beans.

Grease the bottom of a glass pie plate and lay 1 tortilla in the base.  Scoop approximately 1/4 of the chicken mixture on & spread, then top with a portion of the tomato soup, and sprinkle with a portion of the cheese.  Add the next tortilla & continue to layer in this order.  Finish with a little soup over the top & a layer of cheese to melt.  Cover with foil and bake at 350 degrees for 25-30 minutes.

 

 

 

Cinnamon Honey Butter

 

Cinnamon honey butterI set this recipe aside years ago and never made it but after baking dinner rolls the other night I decided this would go perfectly….We demolished the whole batch within a couple days, it was one of those things the kids just couldn’t get enough of. While not great in huge quantities for the rest of us, this was a total hit with Christa and a wonderful add-on to boost those calories. We devoured it on toast the next morning and I bet it would also be delicious on pancakes or muffins. Our dietitian told us once to think about Christa’s favorite foods, and then think about the high calorie & high-fat things you could add to them. Cinnamon Honey Butter fits that bill, I might just have to make her a batch & store it in an empty sour cream container or something to disguise it!
Cinnamon Honey Butter
2 sticks room temperature butter
1 cup honey
3T olive oil
1 cup pwd sugar
1 tsp vanilla
2tbs cinnamon
1/2 tsp salt
Blend until smooth & store in an airtight container, the oil allows you to spread it a little even straight out of the fridge.