Friday, June 15, 2018

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 8th 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. 


Sunday, May 6, 2018

Loosing More Than A Ruby

 I am blowing off the dust of the blog tonight. I just have this post rattling around in my head and I have to get it out. It’s bothering me the rattling.

First. I received this text from a cherished friend on January 24th.

“Hey I’m tired of wearing my fat clothes. Do you want to work together to loose weight? I don’t want to put up money or prizes or anything. I just want to work together and encourage each other along the way. Once a week weigh in’s. Are you in?”

It took me a minute to decide what to tell her. I knew I had gained a significant amount of weight not only with adding on a dozen pounds or so after each of my four babies but even AFTER my last baby was born gaining an unhealthy amount of weight. But with it all, the weight I mean. I still felt like I had confidence and accepted my body for what it was. I still felt beautiful. Until recently. Enjoy a digression…

Starting Weight
Part of my confidence and joy (despite my weight gain) in life comes from my hobbies. I love to create. Typically through fabric, sometimes paper and pen. Sewing my own clothes just how I want them fills me with happiness. Since my first job at Sally’s Fabrics I’ve been coo coo for sewing my own clothes. Thrilling. This past year I particularly enjoyed a high waisted maxi skirt. I even made two of them (which for me is restraint because when I love something I make I usually obsess until I have one in 12 different colors, like a fabric gluten). The first one turned out (in my mind which is all the counts when it comes to wearing what I sew) so fantastic that I made another to wear to my husband’s Christmas work party. I loved the femininity of the floor length skirt and how flowy it was. I felt like a queen whenever I wore it. I could get down on the floor with the kids and sit cris cross. It had pockets. It had color. I loved it and wore it often. One time earlier this fall I even wore it as I “saved” a kindergartener on my sons playground who had gotten their knee stuck between the bars of the playground equipment. The principal was running to get some WD40 and I jumped to the top of the playground structure with another playground aide and helped get his leg out before any grease could arrive. When the bell rang and all the kindergarteners ran for their teacher lines I stood at the top and couldn’t help looking back at my shadow to see my skirt billowing like a super hero cape. Power skirt. But then this very power skirt that I loved was what I was wearing when within the same month two of my long term hair clients asked me while I was cutting their hair if I was pregnant. I was shocked both times. Especially when one lady even had the guts to add, “are you sure?” These were mature women too. How could they say that? My heart was so hurt. And then all that confidence I had in my appearance and my awesome power skirt crumbled to the ground. I felt like I knew then what I must look like to others and it was devastating to think that I had gained enough weight to lead people to believe I was pregnant.

So yeah I was interested in giving weight loss a go with my friend. I’d never really ever tried dieting. I just watched myself gradually rise up in weight passively over the past 10 child bearing years. Just watching and buying bigger jeans and looser blouses. So I agreed to start with her that next Monday January 29th, 2018. She is a faithful friend. Diligently coming over every week to my house so it would be more convenient for me to make our weigh in appointments.

At 18 Pounds Lost 
I was shocked and invigorated when weight began coming off. So grateful that she’d asked me to do this with her. My one and only strategy for the first month was calories. I know protein keeps me feeling better than when I just eat carbs but I didn’t go crazy with a strict food plan. I simply ate portion sizes of the things I enjoyed, logged them in the FREE version of the UnderArmor My Fitness Pal app and went about my way. Keeping my calories around 1,200 a day in the first month I lost 18 pounds. No exercise, just counting calories for real. Never having dieted before I thought this would be my normal monthly average. YEAH NO it slowed down. The next month (March) I was able to loss 9.6 pounds and began attempting to reach my step goal (10,000) more diligently. Then for April I focused on closer to 1,000 calories a day and was able to loose another 9.6 pounds then add to my delight that I can run two miles (taking a few walking breaks) which I’ve never ever done in my whole life. Total I’ve lost 38 pounds so far. That is 6 more pounds than my baby girl weighs right now. So I can pick her up and hold her and literally feel how much weight I’ve lost. I’m thrilled and happy for the things I’ve learned about myself. I’ve learned what my triggers are. Having to say no to people, or experiencing conflict with family members was a big trigger. When my kids are sick is another. It’s made me into a crier when I’ve never been a crier. But that’s been way better than eating a sleeve or two of EL Fudge cookies. I feel better after I cry as opposed to feeling sick and still sad and upset. Its been empowering and really fun to see my clothes get too big for me. I fit into a jean size 6 times smaller than I was when I started. I’m not done yet. Really to get to the middle of my “healthy weight range” and not just teeter at the top I have still about as much to go as I’ve lost. But I’m excited about it. I’m so excited that I tried and that I’ve learned so much and am enjoying making healthy changes and healthy choices.

At 38 pounds lost. 
All that being said I still eat things I love and that are especially delicious and appealing but just less or only one item that is especially indulgent every once and a while. I bank calories for these foods to enjoy periodically. So here is my short list (my circle is small folks and I’m OK with it)

East Valley Arizona Food List Totally Worth Every Bite To Save Calories For List.

1.       A junior sized white pizza at Floridema’s Italian restaurant on Gilbert and Gaudalupe. This especially terrific pizza not only is a garlic and cheese lovers dream but the crust is boss. Not a hog that fills your bite up with nonsense bread but a gentleman’s crust who says, “yeah sure go ahead we work together here on this pizza I’ll be here to help you enjoy these bites. Each and every one.”

2.       Blueberry streusel donut from Hurt’s donuts in Tempe. I’ve said it before and I’ll say it again. This is something you need to taste in your earthly life. Do it. This streusel is unbeatable. The blueberry donut inside will also create a hashtag in your mind and it will be #bombdiggitybro and second runner up at Hurt’s is a pink lemonade cake donut. Trust me on this I know cake donuts.

3.       Anything on the menu at Carolina’s Mexican Food Restaurant (we convene at the Mesa Country Club location, but my brothers have been driving to Phoenix for the original local for years.) So I started as a huge fan of their mini chimi’s but am really super into the bean tostada (lame you say, well how about you take a bite and then we can talk. But really if you say anything bad I don’t want you to say it please). My husband goes for the mixed red and green burrito no beans. But what makes my mouth water just thinking about it are the chips and hot sauce. I just love it. Love is not an exaggeration.

4.       Sugar cookies from The Sweet Tooth Fairy. I know that they are well known for their cake bites but guys listen up those sugar cookies can’t be beat. Other bakeries get it on the décor and yeah their pretty I’ve even been tricked by their beauty into buying them (Kneaders sugar cookies) but am totally disappointed on taste. These pack the double fisted punch of both glamorous beauty and spectacular taste to match.

5.        The black cherry oreo dipped cone from Chocolates and Crème’s on Val Vista and Baseline. Cover your eyes and ears kids but one bite of this and I just wanted to make out with my husband. IT IS that tasty. But I didn’t do that because hey show some respect it’s a public place were not animals. It’s that good though it’s no joke.

6.       My most recent discovery is a new twist on an old favorite. I always thought people were weirdos for ordering their hamburger wrapped in lettuce at In N Out but now I’m one of them. Absolutely a lettuce wrapping weirder. I read up on the secret menu and found something that I knew I would love. I asked them to give me a “mustard grilled cheeseburger with chili’s protein style.” I’m so excited about this burger. Wrapping it in lettuce as opposed to the bread only enhanced the awesomeness of a mustard grilled cheeseburger with chili’s. I’m so happy that the secret menu is not really a secret and that I will always order this now when I In N Out.

I’m exhausted from writing about all my favorite foods. This post had nothing to do with my kids or how CF Is Not Forever. So to sum up on that side of things. Recent blood work came back with some typical flags and some dreaded flags. We’ll have some diabetes screening in May. Just a screening at this point and most likely a fasting glucose test but it’s time to get some knowledge on CFRD (Cystic Fibrosis Related Diabetes) and how we can work together as a family unit to be ready for this new challenge and reality of the repercussions of life with broken pancreases. Were also hoping to get on board with the newest CF med for our mutation since our oldest kid is old enough. We have high hopes of starting over the summer as to test out inevitable side effects NOT during school time.  I’ll try to write more. I like it. Not as much as sewing my own clothes but its fun. I need to write more often again.

Monday, January 29, 2018

Can I Ask You A Personal Question?

Friend: “Can I ask you a personal question?”

Me: “Sure.”

Friend: “What helped you decide to have more children after your children were born with Cystic Fibrosis.”

Me: “Yes! One of my favorite personal questions!”

                I really didn’t say the last part but I was glad to answer the question because it’s an intriguing topic. After our first baby was born and a few weeks later diagnosed with Cystic Fibrosis my heart and mind closed to the idea of having any more children. I got upset with people that talked about it or referenced it. Shocked that they would even suggest we would want to have more children. Didn’t they know that it was our fault our children were born with a chronic disease, and it could happen again to the next baby! Didn’t they understand that?

                But things changed. As I became a mother and got right in the middle of loving this strong willed charming sassy first born baby girl that hard shell of “absolutely no more children it’s only going to be her and her alone,” began to chip away. The Holy Ghost, AKA Still Small Voice, AKA Spirit of God would give us whispers of there being more children to come for us. We would go back and forth as wife and husband one saying something about having another child and then the other saying something a few weeks later. It didn’t take long before we were sure it was the right thing for us to do. Before long, our second baby was born, a boy, and he landed in the 75% of a chance of not having Cystic Fibrosis. We celebrated that our family was complete. A boy and a girl! One of each! We wouldn’t dare mess with that perfect distribution! There would be no more children for us!

                But we were wrong again a third time and then most shocking of all to us a four time. Ruby, our sweet baby girl had to be the loudest to get herself here. But the point was each time our knitted couple heart was made ready through the whisperings of the Spirit of God. As I turn around and look back on our still very young family I am overwhelmed by gratitude that we’ve been so blessed. Through the process of the 8 years that it took for us to get our four children on the earth with us there are two very special conference talks that helped me personally see past the walls of the world and into my eternity. One of them was Children, by Elder Neil L. Anderson (first given just a few hours before Orson our third child and second with Cystic Fibrosis was born sending my pregnant self into streams of tears) and then with baby Ruby, Which Way Do You Face, but Elder Lynn G. Robbins (the talk that gave me the powerful reminder that I needed to care nothing about what the world though and only about what God thought).

So the simplest answer to my friends personal question would be, God let us know we had more children waiting and we were blessed with the fortitude to listen. Words can’t express how much joy we have received from each of our children. “We believe in families, and we believe in children,” (Elder Neil L. Anderson).

Wednesday, December 20, 2017

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.

Tuesday, November 21, 2017

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.

Sunday, October 29, 2017

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.

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.

Wednesday, September 20, 2017

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 30th 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.