7,000 Hours Later

Gut reflections, 4 years into g-tube life.


Orson has had his g-tube for four years now. It is still strange, incredibly cool, and can be emotionally draining for him all at once. He loves having a trap door for liquid meds. He loves watching youtube (studio C, and kid snipets) videos while his morning bolus feed is accomplished. He typically does not like talking about his g-tube with people. Sometimes however he will randomly offer up the information depending on the social environment. He hates that it is always there. He hates the scared feeling he gets when someone on the playground accidentally kicks/bumps him in the stomach or it gets snagged on something unexpectedly. He has adapted exceptionally well to having a piece of plastic hooked into him every second of the day for the past 4 years. He still plays rough with siblings and dad, swims, does full participation in PE at school, and runs around like a maniac on the playground at recess. He has one skip night a week so if you add up the skip nights (52 and round up to include when his stomach is too upset to hook up at nights, or he skips for other reasons to 65 total skip nights a year) and get him doing his button 300 days a year every night for 4 years, he has run 1,200 nights of 6 hour continuous feeds. Approximate total hours tethered to his formula pump for the past 4 years is 7,200. That also means Frank or I have gotten up to unhook our buddy and get him to the bathroom 1,200 times.


It has blessedly never had to have been surgically placed again since its original placement in 2015. We have become experts in removing the old button and replacing it quickly for him. We have learned the best kind of tape to use and how to prevent it from tugging on him while he sleeps like a wild wiggly child each night. His teachers or myself have taken a “foley” and/or tape with us on each field trip he has ever gone on, or anytime we leave the house at all for just in case emergencies of it coming out and needing to save the sight from closing up.


He continues to not have the desire to eat much orally. I continue to wonder if I’m doing the right thing using the canned formula or if I should use a fancy blender and do custom formulations for him like other g-tube moms I know who do that very successfully. I tried it for a while back in December of 2017 when he had tonsil/adenoid/sinus/bronch done on the same day and afterwards couldn’t eat orally for 9 days. It was really neat to do the blends but for several reasons we went back to the canned formula.

He periodically asks when he can get rid of the g-tube. We explain that it would be a slow process over a year or more where he would taper the use of it while continuing to maintain or gain weight and then finally end use of it and then the decision could be made at that point to remove it or not.  


I went back and read the post I wrote after his surgery and it really was a terrible time. We had no idea how awful the entire anesthesia experience would be for him. Four years and a handful of other anesthesia’s later we see that its just extremely taxing on him mentally and physically every time he goes under. Torturous on the kid. It was also our first experience in a negative hospital environment. Insurance had us use a different facility than we were used to and it was not great. A huge miscommunication between the surgeon and the hospitalists happened and no one wanted to contact the surgeon to clarify so Orson ended up fasting unnecessarily for 39 hours. My hindsight and gained experience over the past 4 years of life with hospitalized chronically ill children has me seeing the situation he was in with anger. I would do it so differently with my now knowledge. I’m sick to my stomach now thinking about how we let him suffer because we were afraid to defy the “hospital” when we knew better from the surgeon. But then I try to remember that anger solves nothing and that we have learned a truckload since then and most importantly I remember the sweet sweet King Of Brave who fed his bear when he could not eat himself. What a sweet daddy he will be.


The g-tube has been a mighty lesson for Orson in strength, endurance, compassion, and courage. We’ve definitely learned about all those things from watching him.

King Of Brave 2019

2019 April vs. 2015 April family photo

Spark the Fight & Weight Loss Update

Sparking the Fight of Compliance

This is a year of blossoming and growth for all the children. Particularly it seems for our oldest child as she reaches the end of elementary school. It is on my mind always that this is the last year that they will all be together at the same school. I guess I didn't realize I would only have two years of that and once I did the last year seems very precious. Also thinking of the schedule change and location change and routine change that comes with next school year, this same daughter starting junior high and leaving the home 50 minutes earlier than she does now really really really seems impossible. We need a solid two hours to successfully complete our morning routine (sinus issues, bathroom time, vests, g-tube work, inhalers, nebs, antibiotics, pills, scripture study, breakfast, pack up) so that pushes us all up to waking up at 5 and getting started. 

I have been aware of the school day morning miracle happening each day this year again since school started. All summer long we drag through treatments and breakfast each morning and I think "how in the world do we ever get this all done and packing lunches by our 8:00 departure time on school days?" We really have angels helping us each morning. Perhaps they hold down the hands of the clock just a few seconds each minute so somehow it works. Even more miraculous are the school day mornings when I see each Saturday and Sunday all year round being the ultimate struggle to get through treatments.

She received one of the biggest surprises of her life when she tried out for the school play. She tried out for a supporting character and landed a lead instead. That boost of confidence gave her the courage to run for student council and although she didn’t win she chose to still be a class representative. Then at church she joined a group of other musicians with her viola and they have been practicing for a “I Am A Child of God,” primary program.

With this grown up schedule added on to the regular family seasonal schedule of soccer, fall parties, and her activity days for girls meetings it’s been exhausting for her. She loves all of it and doesn’t want to miss anything. She is trying very hard to keep up with it all. Then as predictable as every start of school year she begins to loose the desire to eat to make more time for friends and activities. Not taking the time to eat begins to snowball the health of anyone but particularly someone whose body already demands extra calories and oxygen.

At clinic a week and a half ago it all showed up clear as day on the vitals and pulmonary function tests. Her tank is running on empty. Her PFT’s were down 15 points below what they were BEFORE she was hospitalized over the summer. Her weight gain has slowed down enough to crash her off of her trend line. What was most disheartening and discouraging was how she took the news at the clinic. Resigned. Passive. Acquiescent.

So I come home and as I tell my husband everything I saw and heard at clinic which usually takes a few days for me to remember all the details we slowly together come up with our parent plan. We have to spark the fight of compliance and extra compliance and assertive compliance to her treatments. We keep asking what more can we do to help and what more can we do to encourage her in this life altering skill of compliance to her detailed and arduous never ending medical regimen. She has the pain, discomfort, and burden of the disease and we do what we can to help her figure out what works for her to relieve that as much as possible. I don’t like to ever  use the H word but I HATE when she’s suffering digestive wise of sinus wise or airway clearance wise and I have no more tools to hand her.

Things are slowly dropping off of her busy schedule and by the end of this week things will have gone back to our baseline of family business but then she’s left to dig herself out of the health hole she has gotten into by participating in these amazing social and mentally growth promoting activities.

The pulmonologist was so kind and understanding at clinic with Maelee’s drop in statistics. She was encouraging, overlooked the angsty elleventeen jazz and said come back again soon so we can check all your numbers.

We know she is full of strength. We watch her use it everyday. Now we need to be the best compliance coaches we can be as parents because it is not only her that is benefitting but all her siblings watching and coming up behind her. The clinic in November will bring more news to see what is next for Maelee in the last few weeks of 2018. And by that I mean another possible hospitalization or the best side of the coin soaring numbers of plenty and sleeping in her own bed.

Kamarah’s weight loss update. 

The stress of the last four years showed itself in the choices I made with food. Last time I wrote about it I was at 38 pounds lost. I am so grateful to say that right now I am holding steady at 67 pounds lost. I was selfishly hoping to get to a full 70 pounds before I blogged about it again but I’m very thankful for the success of 67 and need to remember that. I have lost more than I ever thought I could. I met two of the three goals I had and have accepted that the third goal will remain as a war wound of motherhood.

The three goals being. One: fit into my awesome red pants. I fit into them and now they are much to big for me so I am on the hunt for just as rad of a pair or red pants. Two: my wedding ring fits on my finger again, and also loose at that. The third goal which is actually a great way to keep me humble and kind will not as it seems ever be fixed by weight loss. I have a long spray of bulging spider veins on my left leg that wrap around the back all the way to the front and down my leg. I thought loosing weight would diminish those but it turns out you can’t un-stretch blood vessels and that’s OK because I’m full of joy everyday by the babies I carried that brought those veins.

My weight loss strategy has remained the same. 1,000 – 1,200 calories (tracked by me on My Fitness Pal App by UnderArmor the free one not the premium version), and to get 10,000 steps and day and or 30 “active minutes.” I would say 98% of my active minutes have come from walking either in place while I watch or listen to something or by walking in my neighborhood. I do not have a trainer, a gym membership, use pills, surgery, or anything else besides those things. My favorite way to think about my calories is waking up everyday with $1,000 to spend. I have become really good at finding the things I like and feel the best spending that $1,000 on everyday, and do still sometimes fall for traps of delicious sugar cookies, donuts and pizza. But I own up to those traps and pay out the money and don’t overspend.

My personal goal is to make it to my year mark of when I started loosing weight which was January 29^th. At that point I will evaluate my weight and see what I need to do to maintain that weight. I sit comfortably smack dab in the middle of the healthy BMI range for my height of 5’10. Look up my weight I dare you. 

Doing Drugs Again and How to Fail A Glucose Test

A month ago today we had clinic. Each of the kids Cystic Fibrosis story remains to be curiously different to us as parents. We knew the disease would not affect them all in the same way of course, but it is interesting to us to see how it plays out symptoms wise and milestone wise simultaneously as a family experience.

Here we are seconds before vomit ignition on lab day

We see one child has taught us what asthma is in tandem with Cystic Fibrosis. I didn’t understand and couldn’t tell the difference between an asthma exacerbation and a CF exacerbation until this past year and a half. Now I know the difference and I also understand that they are exceptionally frustrating when they happen at the same time.

I never realized as a parent of a chronically ill child how thrilling and crushing new drugs can be. Relizorb for instance has been nothing but a massive blessing to our g-tube child who does a continuous feed 6 hours each night. Relizorb I’ve mentioned before, but to recap its this genius cartridge of enzymes that gets hooked up to his feed tubing that continuously releases pancreatic enzymes so he is literally receiving a continuous dose of enzymes. Life changing drug. Now cramps, malabsorption, diarrhea, middle of the night pain, less pill swallowing (at 2 in the morning no less), and overall miserableness is greatly reduced. We are so grateful for Relizorb. It has made life so much for pleasant for our son which makes life so much more pleasant for us.

Unfortunately due to the nature of tube feeding and a medicine prescribed to be used in tandem with tube feeding its coded under medical and not prescription codes as far as insurance goes. Because of this it has been explained to me over the past couple of months not something that any pharmacy wants to fill. Our insurance has said that they would cover it. Great! But then there are not pharmacies that will fill it that are “in network” with our insurance. So now there are I don’t know how many other CF patients who are also being told along with me as a mother of a CF son who is benefiting significantly from the drug that the “bridge program” provided as a very generous blessing by the pharmaceutical company will be running out for us in about a month and a half unless a miracle can happen and they can get a pharmacy set up to handle this hard to handle code. In our prayers we pray for Relizorb to be made available to all of the CF patients who are benefiting from it.

Then we have Orkambi. A new with in the past couple of years CF drug. Big big big news in the CF community. One of those new high faluting fandangled gene altering meds. It is supposed to help correct the core problem with CF bodies, which is how the water and salt function together on a (get ready for a big science word) “molecular level.” We jumped on that wagon as soon as we could for our only child who was old enough about a year and a half ago. The side effects were awful. She was miserable. Our parental decision then was do we encourage her to suffer through these side effects in hopes they will go away as some patients have found. Do we hope that pushing her through the literal pain and nausea and tearful stomachaches will be worth it if her lung function improves? It was hard to know what to do. We decided to pull her off of the medication. We still wonder if it was the right decision.

Now we are having our son start Orkambi. It took some doing and lots of phone calls on my part and work from a dozen people besides myself (you get very personalized service when our dealing with a $200,000 + a year drug) but he will start the med before the month of June is over. Are we nervous? Yes. He already has so many layers of mental and physical issues regarding his stomach, digestion, and overall well being. But then we remember how different he and she are in their CF story and we have hope that it will work for him. We have hope that he’ll be blessed by the drug like so many others with the DF508 mutation. That specifically will be in our prayers as we start him this month during the summer so if he does have unfortunate symptoms he will be at home and not at school to deal with them.

Now for the rest of the story on Cystic Fibrosis Related Diabetes. We went a few days after school got out to do the highly anticipated two hour glucose test to get a reading on blood sugar levels. I got to the lab with both daughter and son in hand. When we got called back and saw that the drink was 10 ounces I gulped. Orson is absolutely definitely not physically capable of doing a 10 ounce bolus feed. His typical tolerance on a fantastic morning of health is a 6 ounce bolus feed and that is with me or his brother providing a cheerful convincing mode of assorted distractions during the bolus feed (not the typical morning when it’s a rushed and grumpy experience before school when we are lucky to get in 4 ounces). But we pressed on because that’s what parents do, convince their kids to do things that they don’t want to do. I had brought the syringes I needed and a handy dandy 24 inch extension set and I got to work cheerfully bolus feeding the 10 ounces into Orson’s g-tube while the very kind lab techs wearily watched from a two foot distance (it’s a very small room those lab rooms, the walls close in pretty fast). The whole time attempting to distract him from the experience with jokes, stories, encouraging words, assuring words. But the pressure on the 8^th ounce was too much not only for his mental state but for his physical state. He begged me to stop. He pleaded with me to stop. He began to cry. He asked to go to the bathroom (classic). The lab tech’s eyes got big. They expressed their concern the he was going to the bathroom to throw up. I vehemently guaranteed he wasn’t throwing up. I’m simultaneously saying mental prayers with me teeth clenched into my medical mother smile chatting with the lab techs and getting Maelee ready to drink her drink as well (orally thank heavens and much much much easier of a job than getting Orson to do it) while Orson was in the bathroom.

He returns from the bathroom. I slowly and very carefully finish bolusing the full 10 ounces of sugar water into Orson’s gut. He cries a little more but relents to the feed and gets through it. We move to the waiting room. Daughter is grateful she got through the drink. Son is hurting. Oh he’s hurting. He’s trying to put on a brave face. He’s trying to push through it by being excited to get “free” tablet time during his projected two hour wait for the second blood draw. His mental game was strong. He really tried hard to get through it. But his stomach, the same stomach he struggles with every minute of the day was not having 10 ounces of nasty sugar water sitting in it empty of anything else. He makes it about 27 minutes before his very sensitive stomach violently takes over and he vomits everywhere. I was in the splash zone. The tablet was in the splash zone. The carpet and upholstered chair in the semi-private waiting area were in the splash zone.

He was mortified. The semi private waiting area cleared quickly of any other waiters. I walked him dripping and in tears to the bathroom. I told him to wash his hands and wipe up the best he could after I used my purse wet wipes to get him started in the sad public vomiting experience. I also snagged some paper towels and began to clean up the mess and then peaked my head into the lab tech room to let her know of the room clearing vomit. The janitor came quickly. I wanted her to know I had been working on cleaning it up and that I was sorry for her trouble. She kindly assured me it was OK.

I walked Orson back to our lab camp site and sat him down (a couple of chairs over from the one with the caution cone on it in the drying process from disinfectant) in the still empty semi private waiting room. Maelee still had an hour and a half to wait before she could finish her testing with another blood draw. I let the lab tech know that I was going to take my son home (who wants to sit in their own vomit for an hour and a half in a public place or ANYWHERE?) and come back to sit with my daughter. The lab tech with sympathy told me that typically she would not allow me to leave but since my daughter was older and could safely wait alone she would let me. Thanks friend. Thanks.

So my buddy went home and got fixed up while I ran back to the lab to sit again. I felt so guilty and bad for literally forcing him to do the bolus. Long story shorter we are staring another mode of testing for CFRD which is good old fashioned glucose monitoring in July. I say in July because that’s when they’ll go back for their hospitalization determination day. Both of the older CF kids are on watch for a potential summer hospital stay with all-inclusive hospital monitoring and IV antibiotics. Weight and lung function have stayed low enough for enough clinic visits in a row to create concern medically and get them on “hospital watch,” to see if a round of IV antibiotics are necessary during the summer before school starts up again.

It is what it is. They are doing their best. We are really trying hard to be extremely diligent with treatments and to get them moving physically (basketball camp, lots of swimming, family running in place timed sets), to be able to say we’ve done everything we can to avoid the hospital. We hope it works and they stay out but they may still need to go in. Which would be OK and we would all survive it. It would be unfortunate to have PICC lines because it rules out the pool in the sweltering AZ summer but we’d deal. Time will tell. July will tell. So for now we will take June and hold her in our arms and thank her for lots of pool time and family memories made. I'm just now realizing though that if we did come home with IV's that would mean running to IV med's potentially simultaneously  which does make me sweaty. 

  

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.

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.