Horrific Invisible Rollercoaster

The thought that brought Orson the most trepidation going into his surgery last week was vomiting blood up after it was over like his sister told him she did after her surgery last year. Well it happened. More blood vomit. It’s absolutely expected after this sort of surgery but its nonetheless traumatic and scary for the puker and full of surprises for those taking care of the puker.

After his three hour fifteen minute procedure the ENT/surgeon came out to talk with us and said he was shocked at how many polyps Orson had. He said he had difficulty finding any passage at all and was shocked if Orson was breathing through his nose at all before this. But he assures us all the impacted (clear back to the back on both sides and up and down) sinus were cleaned out, along with tonsils and adenoids removed. Thanks Doc good work!

So then we go back to Orson who is balancing between sleep and awake in post op. He’d already thrown up blood the first time before we got to him and is looking miserable. When Orson pukes he thrashes violently around the general area he is in and yells. It’s like he is riding a terrible horrifying invisible rollercoaster and he can’t get off. But add to that roller coaster blood vomit. First thing the sweet post op nurse says to me is “careful mom he’s making real sudden movements.” She doesn’t know about his vomit coaster, but his Dad and I do. So next time he thrashed up out of the bed Frank Daddy grabbed his shoulders to hold him steady and I had the vomit bag (the nurses quickly upgraded him to a vomit bucket) to catch Orson’s worst fear in its expandable blue plastic sleeve, blood vomit.

The other sweet thin and petite post op nurse was like, “mom feel free to get right into the bed with your son its OK we will let you.” And I’m thinking “lady I’m 5 foot 10 and I’m all about that bass no treble so I don’t think crawling into the hospital bed with my son who’s attached to an IV and is vomiting blood is my best choice. I really really sincerely appreciate your idea but I’ll opt for leaning in and stroking his head as opposed to smashing him and getting blood vomit more directly on myself than I’ve already gotten.”

He would beg for water, drink a bit, then vomit blood. Common post op protocol. They gave him a bit of morphine which knocked him out well enough to take the edge off and get him upstairs to his overnight bed. Frank helped the nurse wheel his bed upstairs as opposed to waiting for transportation to come. Just as Frank left to go get Orson’s bag out of the car he blood vomited again only this time I was the only one there. So I’m attempting to hold him steady and also chase him with the vomit bucket. The results were not pretty. A kindly tech then changed the sheets with scary looking red bombs dropped in various places while I held Orson in my lap in a char. Then his nurse came in and asked, “so is this blood or vomit,” “both” I said as she changed the arm board and IV dressing that also was a victim of the vomit roller coaster.

Tonsils, adenoids, sinus surgery, and bronchoscopy’s done simultaneously are definitely in the more common procedures for kids/adults but it sure threw our little underweight CF boy’s body and mind for a loop. We’ve felt extremely grateful for his g-tube it has taken a tremendous amount of worry and stress out of taking care of him post op. We can do all meds through it. I even had a sweet friend back east make a video for me to show me how she administers enzymes through her daughters g-tube. While I didn’t master the task as well as her 5 years of experience has, I did manage to administer them as many times as it took for Orson to hate it and be motivated enough to start swallowing at least enzymes again. Five days later his ears are killing him, he’s got dark purple/red circles under his eyes, and most of his calories (like 95%) are administered through the g-tube because his pain is too bothersome to eat BUT he is already noticing his ability to breath clearer and we look forward to complete recovery when he can smell, breath, and hopefully have more desire to eat like the hungry hungry beast he needs to be.

Good job Frank Daddy for spending the night in the hospital and having your own solo blood vomit experiences throughout the night. Good job Orson for facing your fears and being a champion all star for all the crappy stuff you have to do. You remain to be The King of Brave. Good job my Mom (our Bebe Girl) for taking care of everything else so we could be at the hospital. You are one of our Angels. Good job amazing staff at the best hospital ever we appreciate all the kindness and care. We are one of those families that are too blessed to be stressed and its all because of our faith in a Heavenly Father who has a plan for each of us and helps us all along the way.

Foul Nights Wake Me Up When December Comes

So our theory with Orson’s g-tube feeds is we want him to be able to sleep without it for as much time as possible at night and for that reason we run at a feed rate which will end his feed at about 1:30am so we can unhook him, help him get to the toilet and then go back to bed without a tether.  It’s totally normal and we all basically sleep walk through the process. Lately though things have gotten a little crazy. It started a few weeks ago. I woke up to the alarm on his pump screaming at me through the monitor next to my bed and immediately I smell it. Shockingly foul but I’m so tired and in sleep walk mode so I remember actually thinking, “whatever it is I’ll find it in the morning and clean it up.” But as all things foul in a household full of kids and a dog you can’t put off the funk, it always always finds you. As I walked back into my bedroom from finishing up with my g-tube buddy, using my cell phone light I feel pulled one step farther from where I need to go to land in my bed. My stutter step tracks the cell phone flashlight onto a medium sized pile of poop next to my bed. Fantastic. So that is the beginning of the foul things in the night at our house and also the night I was pushed by an angel, because heaven knows stepping in a pile of my sweet-little-old-lady-cocker-spaniel’s poop on the carpet at 2am would have sent me into a fit of rage.

More seriously and recently my g-tube buddy has experienced many foul things himself at night. Mainly throwing up and pooping multiple times a night. It all started the first weekend in November when I was scheduled to go out of town with my oldest daughter to her school science camp. It really hasn’t gotten a whole lot better since then besides the vomiting has stopped and I’ve become  a tyrant with his digestive supplement routine to try to alleviate some of his pain and discomfort. But this normally great sleeper who can and did two pouches of formula a night like a champion is down to one and some change. In tandem with this night time awfulness like a woman who lost her sense of reason I began to watch the second season of a very intense show with my husband at night before I went to bed. So now even when I’m expecting it a panicked six year old sneaking up on me and whisper screaming “MOM” into my face multiple times a night is extremely unsettling. Were all walking on a very frayed rope these days. I’m thankful that at least the second season ended in a very satisfying way, except for Bob. Poor Bob.

But the silver lining’s are plentiful. His stomach x-ray shows no blockage like last year. Which leads us to believe that his pain and discomfort and cramping and night time trouble are from the puss and mucus dripping into his stomach from his extreme sinusitis combined with his nasal polyps all working together to sabotage our son’s health and ability to breath clearly. Also on a thorough clinic visit last week he literally blew everyone away with his PFT (pulmonary function test) scores which were as high as 123. An unheard of personal best for him. So while he is devastatingly loosing weight right now, can’t breathe through his nose, has crazy chapped lips, trouble in the bathroom all times of day and especially at night, isn’t getting enough sleep…..even with all of this physical chaos his lungs are strong. And this my CF team assured me is a huge and definitely the biggest goal of a CF body is to keep those lungs healthy.

So now we wait for adenoid/tonsil/sinus scrape/bronch surgery in December with a hope of finding some big time relief for him after he heals up from it. We are really working so hard to cheer for our boy and keep him intake-ing as much caloric fuel as possible as we wait out surgery day. When Heavenly Father created Orson he made a strong, kind, and especially joyful soul he’s got so much going for him just not nose breathing right now. Thanks be to Heavenly Father who gives us the silver linings amidst the rain. How very miserable it would be without them.

You Did It Again Fry Sauce And I Love You For It

One of my favorite roles to play is daughter. I love hanging out with my mom and feel extremely fortunate to have her in close proximity and in my life. I try to take lots of pictures with her and make lots of memories. I am and always have been so proud to be Sharon’s Youngest Daughter. Last month I was able to be with her in the super exciting setting of her formative years home town of St. George, Utah.

2nd and 3rd Generation Frostop lovers!

Having never driven to St. George as an adult I was really surprised at how close it is to the Arizona border. I knew it was located at the bottom of Utah but seriously its so stinking close to being in Arizona. Not sure why that interested me so much but it really did. Especially when we went to Glitter Mountain and while taking that dirt road we literally weaved in and out and between and back again from Arizona to Utah.

This is it! We are at the magical one and only Jacob Lake!

All my memories of being in St. George and getting to St. George as a kid orbit around two locations, Jacob Lake and Larsen’s Frostop. We would be devastated if it was winter and Jacob Lake was closed when we happened to be driving to St. George to visit family as a kid. So when we pulled in to the tiny parking lot on top of the mountain I was practically floating inside with my four kids, niece and Mom in tow. I wanted my kids to be as excited as I was to be there. Did they know how lucky they were? Of course not. But I tried not to let the five cranky kids in the car for too long energy zap my joy at being back at this magical location once again. My Mom and I basked in the glow of the rustic lodge diner (like for reals rustic hasn’t been “updated” or “renovated” since perhaps the 1950’s not fake rustic like Claim Jumper’s) while sipping a milkshake and eating cookies and trying to wrangle the kids who were definitely not in the same joyful planet we were on. One day I dream of walking in with appreciative older and wise children at my side (and my husband he will be there too) who say something like, “whoa Mom you were right this place is indescribably awesome to me. I can’t even express how happy I am to be here right now with you.” Then as I wipe a tear of joy myself I’ll order us a round of shakes and grilled cheese sandwiches which we will eat in witty conversation sitting in the swivel seats at the bar. They’ll suggest a selfie photoshoot which I will of course agree with. Then for the next week we will all find ourselves saying things like, “remember Jacob Lake, oh man that was the best.” In the mean time it is what it is so we kept on driving.

I loved sitting with my Mom captain and co-captain making our way through town and listening and watching her get excited as she remembered and related family, friend, school and church stories. Neighbors she had. Jobs she survived. College. Her parents. Her siblings. It was so neat for me. I kept thinking, “my mom is the coolest.” And she really is.

Then the next day after we enjoyed a superbly put on main street America parade we were able to go to Larsen’s Frostop. Really as a kid I ordered the same thing everywhere I went so I hate to admit how excited I was to have a milkshake at Larsen’s after having one the afternoon before at Jacob Lake but I cannot tell a lie (especially about something as serious as a milkshake and fry sauce) I was giddy to eat at Larsen’s. I just remembered the many times I was there with my family as a kid. My sister’s walking me down the skinny little white bricked hallway to the bathroom. The colors of the tables and walls. Everything was just how it had been when I was there with my own Dad and Mom and three brothers and two sisters and it was just a perfect memory recreation for me. I remembered it all and those hot French fries in fry sauce took me back to sitting across the table from my Dad and Mom when I was fancy free and living under a magically provided for roof. Can anything be wrong with the world when your dipping fry’s in fry sauce in Utah? No. Nope. It cannot.

So I’m writing tonight instead of sleeping because I haven’t written in a while and I have been wanting to talk about this fun weekend for a while. And I wanted to do a public service announcement for spending time with people that you love and making memories with the people you love that you’ll want to re-create in a couple of years. Because for me and for this time it just made the memories and time spent so full of love for family and for life. Long live milkshakes and fry sauce.

We had to stop for pics at the stunning St. George Temple.

We love to see the temple and the Christus statue in the visitors center!

My 8 year old son was very pleased that I asked him to take this

ridiculous excited picture of me. Thank you my son for being willing to let me make a fool of myself and to document it for me. I will keep asking you to do this for me over the years. Get used to it buddy.

This is a shot from the breathtaking scene at Glitter Mountain, which by the way

is technically in Arizona the great 48th state.

I tried to encourage the stanger taking this picture to get the Jacob Lake sign in it, but alas to no avail.

One of the happiest views on earth. Bakery displays. Oh my heart.

When Your Body Needs More Food Than Your Mouth Can Give It

                When we went to the ENT last week to get Orson’s nasal polyps checked out the scale said he was under weight three pounds since our last hospital scale weigh in. From then on 20 percent of me was listening to the ENT talking about using a combination of meds in attempt to shrink the polyps and put off surgery for a while and the other 80 percent of me was going in to red alert panic mode at the weight loss. My sleep was minimal that night as I wondered what I could do more to help my buddy catch back up to where he was and move ahead. Sleep would not come, until finally the right idea rolled to the front of my brain. Stop fighting this g-tube. Stop pretending he only needs night feeds. Stop avoiding the reality of this situation.

                That night I made a solid decision to get Orson to do some g-tube calories every morning. It was going to be a big emotional daily morning battle. And believe me another daily morning medicine battle is the last thing we need around this house. We tried to do it when he first got his button in 2015 but he really hated watching us do it. He cringed to see that syringe being flushed into his stomach and it put him into hysterics every time. He was doing so well at his night time sleeping feeds that I decided I would stop trying to push the feeds during the day. But now that I see him dropping back down I just kept thinking that I HAD to make this happen. I repeatedly flashed back to that AWFUL HPV vaccine commercial that is on so much right now. You know the one with the little boy shown in a backwards timeline from cancer to before cancer ending with him saying, “you didn’t know about this vaccine right Mom? Did you? Did you.” Like ANY mother or father who could have prevented their kid from getting cancer wouldn’t have tried. What a horrible marketing campaign and scare tactic. Anyway I kept picturing Orson as a spindly teenager and then as a grown man asking me, “Mom why didn’t you try harder. I literally had a straw that led straight to my stomach. Didn’t you know that calories would help me get bigger? Did you Mom? Did you?”

                So the next morning I poured one half of a cup of half and half out and syringed it up. The biggest syringes we have are 60 cc syringes which is 2 ounces or ¼ of a cup. I laid those two syringes out in front of Orson as he was sitting for the 30^th minute in front of the tiny little breakfast he had been struggling to eat (I think it was one boiled egg that day) and said, “Were doing this buddy. We have to. Your body needs more food that your mouth can give it.” The panic began. The hysterics commenced. The cries of “please stop Mom I’m going to barf, oh mom my stomach hurts” were heard. We got through about three ounces of half and half that morning. He stood up hunched over and moaning. He said how much it hurt and that he wouldn’t be able to play on the playground for morning recess.  

                I was so worried about him. I hated it. I hated to make him so upset before school. He forgot his backpack and eye glasses. It was a rough morning. I called the school nurse and told her what was going on and what I was going to start and asked her to please keep her eye on him when he came in to see her before lunch for enzymes.

                As the mornings went on of me trying to get Orson to let me use his button (g-tube) for a breakfast calorie boost the magical combination of Charles helping Orson instead of me happened one especially busy morning. That quickly evolved to Orson doing it himself. Today Orson syringed the full 8 ounces of Pediasure 1.5 cal per mL himself. This gave him 350 calories and 14 grams of protein. Potentially the most calorie rich breakfast he’s ever eaten in his life. I also had gotten those adorable 2 ounce probiotic shots at Costco for him and he sent one of those into his stomach too. Now here is a boy who a week before was in the depths of despair over 3 ounces of fluid being put through his button who now just sent a little under 12 (he did some miralax Gatorade too) ounces through all with his own two hands. He stood up and immediately started running around the house. I watched him run laps and be crazy on his playground at school before the bell rang. My heart was singing. It was another incredible miracle I was able to watch with my kids and their health challenges. The impossible again became possible and will soon slip into normal because of faith, effort, prayer, and the power of a loving Father in Heaven.

I tell you what marketing campaign I am a fan of, and its this

giraffe. Orson thinks he's hilarious.

Orson appreciated I showed him how much 8 ounces was

to him in a relatable way. He helps make cookies and this one cup measurer helped him see 8 ounces less

scary that 4 syringes.

4 syringes 2 ounces a piece may as well have been 5 gallons. It was very overwhelming for him to see it this way.

Here is my happy kids playing on the before school playground! Hooray for that big smile

and not a hunched over in pain 5 year old.

Will I Ever Stop Throwing Mental Tantrums?

At the beginning of the year I wanted to write every week but I only lasted a few months before I choose not to keep that goal. When I did sit down something always came to me, but I stopped sitting down to try so things stopped coming. Hopefully one day I can be stronger with self-discipline but this instead has been a season of reading books late into the night.

This post bike ride selfie sent to my husband to have proof I

took the girls out for a morning bike ride probably

makes you wonder, "does she keep a piano in her garage with her bikes

or bikes inside the house with her piano." The answer is none

of your business. I can do what I want with my bikes.

Catching up on our CF news we had a positive clinic visit right before school started. The only sad part was that the scale in our clinic had broken so they had a loaner scale from another department. The night before I had happened to weigh my g-tuber on our home scale to see a monster weight gain and did a pre-victory celebration but then the next morning on the loaner scale in clinic he was five pounds less. I wanted to throw a tantrum and jump up and down and scream something about the scale telling lies but instead chose to act like a big girl (note the work ACT because I’m really not a big girl on the inside and throw tantrums in my head all day long. But I have gotten to be a pretty good actress over the years).

To sum up the rest of the clinic visit. We discussed boogers, poop, and BMI. All the typical hot topics. We adjusted some medicines in hopes of more comfort and life enjoyment all around the CF table. Ruby is at the magical age when instead of just whining and being miserable during long doctors appointments she try's to do whatever she can to escape from the room we are in and run through the halls screaming so that was fun as usual.

Now I’m all caught up on the basics of our CF times three kids story so I can move on to a personal antidote that I think is worth writing about.

I have the opportunity to teach the five turning six year olds in church. Last week our lesson was titled “Jesus Christ Loves Each of Us.” Its purpose was to “help children know that Jesus Christ loves and blesses children everywhere.”

A suggested lesson development was to tell two stories of Jesus and his relationship with children. The first story is found in Mark 10:13-16. We got into the details of the story and I explained that at first the disciples of Jesus stopped the children from coming to see Jesus, but when Jesus saw that he stopped them and let the children come. We talked about how Jesus “took them up in his arms, put his hands upon them, and blessed them” (Mark 10:16)

Since we only have a handful of kids in our class as we got to this part in the story I started to walk around to each five turning six year old and give them a big hug and let them know that Jesus loves them too and would like to give them a big hug and encourage them and bless them in their lives. By the time I went around the little class circle and was turning to give the last child a hug I turned to him to see his arms spread open waiting for me to come. It was the best part of my week. My heart was touched and I knew that for that little second when I turned to see his arms open wide that I got a heavenly hug as well from a sweet little 6 year old.

As I sat down happy to see the kids had enjoyed the story I began to tell the second story found in 3 Nephi 3:17. It is a similar story of children being blessed by their Savior Jesus Christ but this time. “he spake unto the multitude, and said into them: Behold your little ones. And as they looked to behold they cast their eyes towards heaven, and they saw the heavens open, and they saw angels descending out of the heavens as it were in the midst of fire; and they came down and encircled those littles ones about, and they were encircled about with fire; and the angles did minister into them.”

When I finished the second story another student in the class asked, “well are you going to go around the circle again and give us another hug or what?” It was fabulous, just what I needed and apparently what the five turning six year olds needed too. It was a great day to be a primary teacher.

I’m grateful for the opportunity to learn with the primary kids and focus on such wonderfully basic topics as “Jesus Christ loves each of us.”

PS – Plus being with primary aged kids is hilarious. You NEVER know what is going to happen. Like earlier that same day at church when we were all together from ages 3 to 8 learning about Moses and the children of Israel getting manna to eat. The magical teacher of the day had asked all the kids to “close their eyes very tight and not peek” so she could proceed to scatter some modern day manna on the ground for them to find (gram crackers). While my own eyes were squeezed shut tight and not peeking the next thing I know I’m being kissed on the lips. Thankfully it was just my own little 5 year old son, but still it makes me nervous to have a 5 year old boy in my charge who gets ideas like kissing women on the lips when their eyes are closed.

I Think We Can All Agree

               

Summer gratitude. Summer props. Round of applause for summer. Oldest son getting baptized. Oldest son becoming a Cub Scout. The lazy river. Tubeless hour. Making lots of silly hats. Tucson temple trip. Hearing that tiger growl and prowl 2 feet away from us. Choosing Oregano’s instead of something unique and local. Listening to Stone Fox. Listening to Dad get furious about the grandfather in Stone Fox. Hearing the fascinating and inspiring details of a missionary in Latvia. Charles finally getting glasses. 10 movies at the movie theater for $7 total. Talking through ten movies for only $7 with my mom on one side and my girlfriend on the other. Watching Moana every day with Ruby. Dad’s floral tie. Teaching Ruby to say “surfs up dude.” Burying my boys in the sand. Holding onto the head of a practically life size blow up giraffe while 5 kids rode waves. River offering Orson a free burrito. Watching my daughter be so brave and boogie board in the ocean. Meeting a man under the pier who handed our boys a one clawed crab. Watching the crabs run from one pier leg to the other between waves. Climbing the rock pier. Feeling so proud to make it to the end. Getting splashed by a huge surprise wave. Listening to “A Single Shard” and hoping that Tree Ear comes out OK in the end. Doing hours and hours or origami thanks to a thoughtful gift from a friend to our son. Reading Sadako And the Thousand Paper Cranes out loud to the boys on the same day that a real life inspirational bright and hopeful girl passed away from her own cancer battle. Bawling while I tried to read out loud. Explaining to the kids that crying is a really wonderful thing. Explaining that crying tears is such a great blessing and can help cleanse and heal our grief. Spending more time at the public pool than I ever thought I could. Being really grateful for %40 family pass sale in April. Picking up 2,347 legos 74 times. Looking for Ruby’s pacifier for at least one hour every day.

Laying on my back talking on the phone to my Mom while Ruby climbs on top of me and jumps on my stomach at the same time my boys both simultaneously urgently need help with one particular fold of origami and also for me to pour them orange juice because its too full, then my niece whispers in my ear “Don’t worry Aunt Kamarah I will clean up those rice krispies.” Phone call ends.

Collecting poop for 72 hours for a CF related test. Laughing while I pack ice around the large jar of poop in a styrofoam ice chest that the lid wouldn’t close on. Driving the frozen poop to the lab. Walking into the every-seat-in-the-house-is-full lab with a large jar of poop. Explaining why the sample was a 72 hour collection to the lab tech. The lab initially refusing to take the sample we had very tediously collected by doctors orders for one of our CF kiddos. Calmly but urgently explaining some more. Sighing a massive sigh of relief when I walked out of that lab without a huge frozen jar of poop.

Beating the robotic numerical phone system and getting appointments for 4 x-rays when the human receptionist told me the week before my only option was walking in and waiting for three hours.

Watching Charles win the “stand on Uncle Selby’s back and balance before you fall into the pool contest” with the final count of 42 seconds.

Feeling pretty useless as a mother when my boys prance off to spend four days with their grandparents and don’t even miss me for a second. Then feeling pretty proud that they are fine without me.

Being grateful that my husband cares enough to find me real Rocky Road ice cream with actual mini marshmallows and not the insulting kind with marshmallow cream.

Having a daughter grown up enough to plan play dates through emails and texts. Watching her plan and carry out her own successful book club.

BUT my favorite part of the entire summer and what sums up this stage of our life as a family is our 4^th of July. We decided to start toilet training our youngest on July 3^rd because Frank Daddy would be home to help me. It went as well as can be expected. We were all waiting on baited breath for her to poop in the toilet. Finally the next day, 4^th of July, she did the glorious deed successfully. Watching her brothers and sister cheer for her was a tear jerking standing ovation moment. They may fight and squabble and hit and say hurtful things to each other at times, but darn it they know when to cheer – even nay especially when its for Ruby’s first poop in the toilet.

As myself and the older kids were driving home from the downtown fireworks I asked them what their favorite part of the day was. My oldest son said, “Mom I think we can all agree that when Ruby pooped in the toilet was our favorite part of the day.” Yeah that was pretty incredible. We all agreed.

So minus a few other million things that happened during the last 10 weeks that’s how we did summer 2017. We did no book reports as planned. The grade level worksheet books I bought remain 17% done. I am not sure anymore if I have all the kids school supplies from their lists because they tore into what I bought one day when I was distracted with company and exploded it all over the house and between their three backpacks. Good luck guys! I write it to remember it. I write it to show gratitude that I got to live it. Thanks summer, we love you. Come back again next year. If I win the lottery we will see you in Alaska, for a few days anyway.

Finding Another Reason for Tears, Slap Fights, and Airing of Grievances

      

 “WE NEED MORE POWER SCOTTY!”

“I’M GIVING IT ALL I’VE GOT!”

Or at least that is what we used to say previous to 2015 when we had a very generous stranger help us with that problem in our previous residence. We had all these perfect outlets in the area of our home we did treatments in and it was very sincerely a beautiful thing to a family in need of power for medical devices, like 6 of them at once. Then recently after 10 years in that home we moved into a different residence and left our dedicated medical equipment circuits behind.

     I was so happy with our new residence that I refused to admit there would be any issues with the electricity there. I thought, “well make this work. I can figure out a way to shuffle the machines around so that we can still get them done together.” But really it didn’t work. I was always worried I was either going to blow up one of their expensive machines or blow up the house. I was waiting to relive the scene from “Money Pit,” with Tom Hanks in the kitchen at any moment.

     After I accepted the reality of needing to get more electrical work done in our new place, we were able to soon have the assistance of our friend who is an electrician come to help us fix the outlets in our treatment/family/front room so that we could all be one big happy treatment family again. Still though all the cords and tubing with three SVN machines running (3 power cords, 3 tubing hoses) and three CPT machines (three power cords and six hoses) running twice a day and still being able to function in that room during non-treatment times was daunting. We didn’t think that it could be improved upon really though until one day this summer it did. It all began with a shocking statement by my husband.

The Chaotic Nonsense

The Beautiful Sense

     I say shocking because really it was. He said that he, “thinks I should get more of those IKEA rolling carts so all the kids have their own.” The shocking part was him suggesting a trip to IKEA. We had one IKEA rolling cart and were using it for only the SVN machines which complicated things because it forced the kids to all be close enough to that cart to reach their tubing. With my kids, forced closeness in proximity to siblings equals tears, slap fights, and excessive airing of grievances. So Frank helped me think more clearly and get us organized for the gauntlet of the 2017-2018 school year by helping my see past my mental block of treatment time being an unfixable tangle of cords and bodies to the kids having versatile range of motion during treatments. Instead of me setting it up for a group of people all trying to perform the same function simultaneously it is now very logically set up for three separate people doing their own treatments separately. Basically instead of nonsense we now have sense.

     Now I will take the time to give thunderous rounds of applause to my husband for not only seeing the plight and fixing it but doing all the dirty work (going to IKEA and putting the carts together) to achieve a huge assistance to my Air Traffic Control Tower problem each morning during treatments. Now surely the kids will be ingenious enough to find something else in the morning hours to cause the battles of tears, slap fights, and excessive airing of grievances because I'm sure will miss that excitement. A mother has to be realistic after all.

PS – I also want to thank the always diligent Swedish based designers of IKEA who help our home to be a better functioning place. In other words, IKEA, I love you.

    

They Shatter My Doubts

                It has been to date a summer filled with changes. Every day when I give Baby Ruby Forever her enzymes without having to get out applesauce to put them in I’m still surprised at her. I kept the applesauce available to use in case we needed it but after her first time of literally swallowing them without water, just swallowing them when I asked her to she hasn’t looked back. It is incredible to watch my kids do things easily that in my mind were going to be so so so difficult. My kids shatter my doubts. I am so excited to see them make progress towards independence with their care. Our situation is unique in that we have three levels of progression with Cystic Fibrosis.

They shatter my doubts, these guys right here.

                The first level, most advanced level, sits with our oldest brave newly double digit turned daughter. She is a courageous leader for her younger CF siblings, (whether she realizes it or not at this point). Six months ago she had her first complete sinus cleanout surgery plus adenoid removal surgery and since then her healing has brought with it huge benefits to her personal gauge of health. She knows now and can feel when her breathing and upper airways are clear and how to try to fix it when she is not. I’m so proud of her in gaining this skill, it was a challenging one to acquire (upper airway clearance) but she’s getting leaps and bounds better at it than ever before. To see her feel the physical difference in a blocked airway and then cringe to know how hard it is going to be to clear that and then to do the work to do it is really sensational. For instance she was laughing so hard today due to a hilarious friend at church (sorry primary teachers she may have been out of hand today) that she gave herself and amazing upper airway workout which left her feeling blocked. She came home from church and spent an hour fixing it, doing all the tricks of her trade (that she has learned for the past 10 years) to finally get it taken care of and with relief declare “I feel so much better now Mom, I really do.” We work with her to know what each pill does that she takes, and what each vial does that she inhales, and why its important to do all the stacks of extras that she does each day to feel healthy. She sets up her own pill box every week and follows a chart to make sure shes got them all. She is very close to being independent with her care and treatments with us praying, learning, watching, reminding, and encouraging from the sidelines. As she gets older well talk about insurance, where to get the cheapest over the counter supplies, etc – but thankfully we aren’t quite to that level yet (because I’m still figuring it out as well).

                Then we have our middle level of CF independence in our only g-tuber plus CF child, our own King of Brave, Orson. He is busy learning all about his g-tube. How to set up his feeds at night, how to hook and unhook himself from his machine, and how to keep his button site protected and safe. Along with having his one night every two weeks or so where he is very angry about having his protruding piece of plastic, he also has a sense of pride about his button. This comes of course from being the only one with one so he enjoys teaching his siblings about it (they love to help him hook and unhook and set it all up as well). He is also aware of what each swallowed and nebbed med does. All of this knowledge is being absorbed without him even being at the milestone of reading on his own yet which I always forget about him not being able to do that because he seems so mature and does so much for himself already in regards to care. He is very careful with his inhalers and I am grateful that he takes the instructions of the respiratory therapists so seriously and is so good at holding his breath and counting between puffs. He has always jumped at the opportunity of doing this on his own and progressing to the next level of self care. He is definitely a younger sibling who is racing to keep up with his older siblings and in this case, CF independence, it’s a really amazing blessing as his parent to see him trying so hard to be responsible in this very crucial part of his life.

                Whats been so wild about our now last level of CF independence in this our 2017 summer of change is watching our Baby Ruby Forever come out of the infantile CF stage where we are doing everything for her to watching her take those first steps to independence. She knows where her medicines are and can walk to carry them. She can hold her own neb cup. She enjoys counting to six in Spanish as we count breaths using her chamber. As I said before she is swallowing pills now. She has begun the always memorable journey of using the toilet and that is always a party for a CF human due to that darn pancreatic insufficiency and other CF nuances. My favorite part about the stage she has finally come into with CF care is that we have had more mornings that not this summer where all three kids are treatmenting at the same time! This is a motherhood miracle for me because its such a relief to have Pulmozyme and other important meds done first thing in the morning and not have to find time to work it in during the always changing day time schedule.

This is a blog post I wish I could go back in time and have myself read two years ago as I was holding my third little CF baby in my arms thinking, “how in the world will this ever work?” Two life changing years overflowing with blessings have happened to get us to these three separate levels of CF care.

My faith in my children's ability to handle the disease they were born with increases every day and it gives me a constant reassurance of God’s planning and presence in each of our lives. They are doing it baby! Wahoo!

When Her Pancreas Was Broken From The Start

Me and Baby Maelee 10 years ago.

Can I just say my hair has never been

this long since this picture? #goals

 As I sat in the CF clinic exam room 10 years ago and our dietician was explaining to me the details of my baby not having a functioning pancreas I learned that she could, would, and does experience frequent and often constant stomach pain and cramping. I remember feeling relieved that I had justification for holding her even more. I hated to think that my tiny innocent baby could be hurting and not be able to tell me. As she has gotten older it is even more difficult to hear her say her stomach hurts and watch her suffer and know all the meds she is already taking and that it isn’t enough to end the pain. Watching my kids struggle with severe pancreatic insufficiency and their CF in general, has helped me to remember that what you see on the outside of a person is not at all reflective of the struggle and pain they are experiencing on the inside.  

Watching through mother eyes as my oldest has experienced rough and constant stream of dealing with her stomach issues since birth I was recently touched when I thought of her in relation to “a certain woman” referenced in the New Testament who had the issue of blood for over 12 years (Mark 5, etc). The woman “had suffered many things of many physicians, and had spent all that she had, and was nothing bettered, but rather grew worse” – Mark 5:26). “And, behold, a woman, which was diseased with an issue of blood twelve years, came behind him, and touched the hem of his garment: For she said within herself, If I may but touch his garment, I shall be whole” (Matthew 9: 20-21). I want her to have faith as this woman did to know that through Jesus she can and will be healed. I want her to fight through the throng of people to get her arm stretched out enough to touch the hem of Jesus’ garment. I know she can be that woman and is becoming that woman now.

I also know that not all healing comes on earth. So I need to help her to wait. That is one of my jobs as a mother. Help her to wait with faith and hope. That one day lung function and pancreatic insufficiency won’t be a problem for her and to be happy and enjoy life while she waits for that day.

Her glamorous ring.

Being the annoying song lady.

I'm not always perfect at compassion and motivating because there are days when I've run out of gas myself it seems. However, it is the little things that the Holy Ghost helps me to know will help. Things that are tiny in thought but powerful in purpose. Things like, finding a flower ring on clearance in the hospital gift shop and walking it up to her to find her awake from her post op nap vomiting blood. I wasn’t planning on getting anything but found the ring and was so happy to be able to give it to her during that difficult recovery. She was thrilled to wear the ring on her IV hand so it would still feel like a beautiful hand. Or when earlier this month when we were going to a follow up appointment that she was extremely nervous for I made her a hat the night before so she would have a little something new and special to wear to the appointment. She is my daughter after all so I knew a little “accessory courage”, one of my favorite kinds of courage to lighten the morning would go a long way (don’t worry I know courage comes from your heart but a fun hat or a pair of earrings can go a long way too in my warped opinion). You never know when you make someone something if they will really like it or not but it was just the thing to help her be positive through the appointment. Or a month before her hospitalization she was getting sick and we had months ahead signed up for a family 5K. She was really dragging and struggling throughout the race. A goofy song I had heard on the radio came to mind and we sang it together to get through the race. Something always comes to mind when the anxiousness of the moment presses on my own mind as I watch her.

Accessory courage at its best on CF clinic day.

When I was searching for some words I needed to hear this week I found something even better. It was this talk by Boyd K. Packer. He explains that we all (especially family members of people struggling mentally and physically) need to “become like angels who “move the water,” healing a spirit by erasing loneliness, embarrassment, or rejection…..If our view is limited to mortal life, some things become unbearable because they seem so unfair and so permanent. There are doctrines which, if understood, will bring a perspective toward and a composure regarding problems which otherwise have no satisfactory explanation…….That day of healing will come. Bodies which are deformed and minds that are warped will be made perfect. In the meantime, we must look after those who wait.”

I feel and see the love of Heavenly Father in my life as I live my life as a mother to all my children.

Comforting My Babies (Wrapped In Love)

I’m so grateful that I come from a family of sewers. Sewing has brought to me immeasurable amounts of joy, therapy, and much needed self-expression since I was a tiny kid threading needles back through my mom’s quilts stretched on quilt frames. Because I love sewing “sew” {so} much I try all sorts of projects but the most satisfying by far is making quilts for my kids. I say “quilts” in the lightest of terms. Don’t picture some elaborate pieced out masterpiece, instead picture something sturdy with color done in large blocks. I love that every bed in my house is covered in a quilt that I made myself. I love that to prepare for big occasions such as a baby being born, or milestone ages reached that I have made a quilt for my kids for that. It’s a journal of sorts. Something that is so special to me that I hope translates into that fabric and batting and binding and when they lay down to sleep or be comforted or warmed that they know their mama’s hands have been there to help make that happen.

Most recently I finished Charles turning 8 quilt because my accidental but then firmly abided by tradition has been to make a baby blanket, then a blanket when my kid turns 3 years old, then a blanket when they turn 8. I suppose I’ll carry it through to ages 12, 16, and then when they live on their own perhaps - - - we’ll see but for now we have those first three quilt ages established.

When I look at the quilts I remember what I thought about when I made them. I remember what was going on in our family and I love that seeing the fabric is what makes the memories come to me.

So far the two eight year old quilts that I have made have been special because turning 8 in our family means that you’re making the decision to follow Jesus Christ and get baptized and receive the gift of the Holy Ghost. The 8 year old quilts are made from clothes that my kids wore throughout the years leading up to their 8^th birthday. I want them to remember what they wore as they first learned about making choices and fixing mistakes and learned of their Savior Jesus Christ.

As I was just last month making Charles 8 year old quilt I thought about 5 years ago when I was making him his three year old quilt. I remember being so worried that I would not finish the quilt on time for Charles 3^rd birthday because Orson was so sick and I was not able to work on it as much as I wanted. The quilt meant a lot to Charles and he reminded me often of how excited he was to get it from me on his birthday.

When I realized that I definitely would not make my deadline because Orson had ended up being admitted to the hospital I remember being a wreck and tearfully asking my Mom if she would finish it for me because I knew how disappointed Charles would be if he didn’t get it as he was hoping. So that particular quilt is especially special because it has the hands of Charles grandmother and his mother in it. It was given to Charles on the morning of his 3^rd birthday in a house decorated by Dad and without his baby brother or Mom there to sing a birthday song. But thanks to my Mom, he DID get it and the legacy of fabric and thread continues over another generation of woman in my family.

I love the analogy of a quilt being like the Holy Ghost (AKA the Comforter, especially applicable in this case). “He is the Comforter (John 14:26). As the soothing voice of a loving parent can quiet a crying child, the whisperings of the Spirit can calm our fears, hush the nagging worries of our life, and comfort us when we grieve. The Holy Ghost can fill us "with hope and perfect love" and "teach [us] the peaceable things of the kingdom" (Moroni 8:26; D&C 36:2).” (link to quote and more info here).

To get to my point, I cannot sing. I cannot dance. But darn it I can sew a quilt under pressure.

I searched high and low amongst my 11,000 jpegs

but couldn't find the quilt pictures I wanted. This

one is adorable though so I'll post it. Picture

a really sweet picture of all three kids wrapped in their

3 year old quilts on Orson's 3rd birthday. Its adorable.

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My Fabric Journal. 

Maelee’s baby blanket (2007): Done in Mary Engelbreit (another obsession of mine) flower style. She being my first baby and my coming off working a full time job we had a little money to buy furniture and fix up her room which was all done from the colors in her quilt.

Charles baby blanket (2009): Lots of fish hand appliqued covered Charles baby blanket. It matched the theme I enforced for our 2^nd CF Great Strides Walk. We couldn’t afford to have more shirts made for our walk team so I made fish for us all to pin on our shirts from the year before. They matched Charles quilt.

Maelee’s 3 year old quilt (2010): My older sister who lived close by would pick Maelee up and take her to preschool for me so that I could finish Maelee’s three year old quilt. It was such a kind service that she did for me, simple and kind and needed. I was getting big with child as they say with baby Orson at the time and had a two year old and I remember how difficult it was to spread out my squares on the floor and get up and down like I needed to. I got that one done because of her.

Orson’s baby blanket (2011): Orson’s birth hit me like a fleet of semi trucks so it took a while to get his quilt done. My Mom actually picked the adorable cowboy fabric and the green satin on the back was the same fabric I had used to make the wedding neck ties for my brothers wedding. His quilt didn’t get done until at least 6 months after he was born, but it did make it to the hospital with him when he was admitted at 7 months for his first CF exacerbation.

Charles 3 year old quilt (2012): We were so devastated to be in the hospital with Orson on Charles birthday. We try to be very sensitive to him not getting the short end of the stick due to being the only one with CF and this felt like breaking that rule majorly. But as I said, my Mom rescued me and got it finished on time.

Orson’s 3 year old quilt (2014): This one looks as much like Charles as I could make it despite a different color scheme because those boys were and are inspirable. They have become such special friends to each other and I loved to be able to carry on that continuity. For my own selfish reasons I’ve always hoped that orange would be Orson’s favorite color so that is what I made his quilt with. You know, “O”range for “O”rson I thought would be cool.

Ruby’s baby blanket (2015): she had so many truly beautiful real deal quilts given to her that I felt my large blocked colorful sturdy ones would be inadequate in comparison, but I made her one just the same. It is from one of my favorite items at IKEA, the precut fabric block bundles they sell tucked away in a little corner of their textile section. The prints are all totally whacked and don’t match at all which is absolutely how I felt when she was born and I was sewing it, but it turned out beautiful despite my crazy fabric choices, perhaps even because of them.

Maelee’s 8 year old quilt (2015): This project was due 7 days after my 4^th child was born and I was definitely late turning it in. Maelee was old enough that I could talk her off the cliff of “mom doesn’t love me because my quilt isn’t done on my birthday” routine, but it was touch and go for a while. All of that summer was a big hot mess, but the quilt was finished before school started in August made with the dresses Maelee had worn all of her growing up to 8 years.

Charles 8 year old quilt (2017): This was a really fun sew. I was feeling happy that summer was near and that baseball and play season was almost over. I enjoyed making the blocks out of Charles t-shirts and remembering how I got most of them on various black Friday clothing hunts into the wee hours of the morning with my black Friday shopping posse.