How To Fail a "Sweat Test"

 
 I never had a sweat test done for any of my CF kids. Maelee had blood work done to determine her CF diagnosis and the other two were found through amniocentesis. I did not feel a "sweat test" was necessary since DNA seems to me to be more telling than sweat anyway. I don't even remember it even being suggested until Ruby. I got phone calls from my pediatrician's office about it enough times that I further investigated my kids need for the test. It turns out that many of the new exciting CF meds (gene thereapy, etc) require a sweat test score. 

The sweat of a person with CF contains a crazy high salt level so a sweat test is the typical way a person is verified with a CF diagnosis.

So since I want my kids to be able to access all the new exciting CF meds when they are old enough to take them I got my two babies into the lab today to get the test done. The only lab is at the hospital 20 miles from our house at the same hospital we were already going to today for a CF clinic visit.

My amazing Mom was able to come with me to this appointment since it was going to be a double whammy of a 2 hour clinic visit and then the mystery of the "sweat test" scheduled after our clinic visit. Poor Orson was a nervous wreck waiting for this test to happen.

On the way to the hospital he began his usual nervous ritual of needing to urgently use the bathroom and having a very emotional panic attack in the backseat. So we drive through terrible traffic with a freaking out 4 year old in the back seat. So I am white knuckling the steering wheel - already a super nervous freeway driver - and trying to distract him by talking about the airport we were passing and where he would go on a plane if he could pick, and driving by the zoo and asking which animal he would take home if he could, etc.

We arrive and let Orson and Grandma jump out to get him to the bathroom and when I get down from the 3rd story of the parking garage with the stroller and all our gear he sweetly tells me, "it turns out it was only pee Mom."

Then we get through our clinic visit which lasted about 2 hours. Orson needed to use the bathroom again a couple of times during those 2 hours. We then re-check in to the lab downstairs to get our sweat test done. Osron pees again right before he starts his test. We have never experienced this test before so had little idea of what to expect.

We walk in and find a variety of interesting machines and medical equipment laid out on the table and counters in the room. Then they hooked Orson and the baby up to the "charge" of electricity that you see in the picture that will encourage their sweat glands to sweat. All during this process Orson was again panicked and kept screaming at the technicians questions like "are you going to hurt me with needles!?!" "What are you doing with those scissors? Are you going to cut my arm?!?"

The technician explained that it would feel similar to the sensation of your foot falling asleep. Orson disagreed. He sat there in a panicked frenzy as the machine "itched him" and "hurt him." Then after each arm was "charged" for 5 minutes each they wrapped a circular sweat collecting paper up with lots of plastic and a chemical warmer. They provided blankets for us to wrap the kids in (thank heavens my Mom was able to come so we could do both kids at the same time!!!!!) and they needed to sit with their arms wrapped up in tight plastic wrap and chemical warmers for 30 minutes to collect the sweat on the circular sweat collecting paper.

Neither child was thrilled to be wrapped and warmed in this way but they got through it. Unfortunately poor Orson did not sweat. He had peed out all of his fluids and we had not replaced them during the morning. When he heard the lady say he would have to do it again he was devastated. He turned to me and asked, "Mom the test didn't work, do I still get my prize?" 

YES SON! You totally get your prize! He was a mess all morning about the test and then it turned out he had reason to be. The great news is, he got a fun prize. And the even better news is all the kids got to hear his glory story and see the pictures we took. We are all very proud of him and Ruby for being the pioneers of the sweat test industry for our family. Maelee will get her test done when Orson goes back in for a second time later in the month.

How to Get My Kid to Eat, AKA, When the Circus Comes to Town 5 Times A Day

Not having the desire to eat isn’t anything I have experienced (even when I have a cold and can't taste anything I keep eating just in case I may catch some flavor). I enjoy eating. I am blessed to have food to eat when I desire to eat it. Some people, many children, definitely one of mine, do not enjoy eating. It has become clear to me that my own kid's lack of desire to eat is a real challenge for him. It’s a struggle. Every pain associated with his stomach, even the pain of hunger, seems to turn him away even further from the mental desire matching up to the physical actions of chewing and swallowing anything.

Teaching my son Orson, who has a strong aversion to eating, to enjoy food and the time spent eating has been an interesting experience. Every day is different in what helps him to have eating success so we have tried a lot of silly things to get him to eat (you know things like take this bite like a doggy). Here are some things that work for us, maybe some of them will help another family.

·         We learned with our first kid from a genius nutritionist we work with at our CF clinic that we should never say “eat this food for Mama (or Dad, etc)” But instead we should focus on showing our kids that the food they eat is a choice of taking care of their body. When they are successful in eating, even a few bites, we encourage them by saying something like “Whoa buddy I bet you feel great after eating that cheese stick and taking care of your body.” “You are going to have lots of good energy now from that banana that you ate, way to take care of your body!” Of course this idea of focusing on kids making good choices for themselves and not for others even their parents is a good general life guideline, not just with eating.

·         Many days options of foods, for example when I list what I have that he could choose from and the list is longer than 3 things, he is overwhelmed and pushed father from the end goal of eating. So I stick to one or two things that he has enjoyed in the past then cheerfully convince him of how swell it sounds to eat that thing again.

·         The amount of food placed before my son can also overwhelm him. So I cut or arrange his food into a certain amount of bites and then we count down each one until they are gone. I sometimes, so he can see his progress, get a notecard and write out the numbers one through fourteen. After each bite I let him circle or cross out the number so we are breaking up the bites with an action.

·         We read a storybook while we eat. For every page, he eats one bite. This helps him have time to chew and swallow and helps me not to go crazy while I am sitting there waiting for him to do so. The goal being by the end of the book he is done eating.

·         Since he seems to be constantly wanting to walk around instead of eat we make action rewards for each bite. For example, he takes a bite and then gets up and does 5 jumping jacks, or he takes a bite and then does a crabwalk to the bookshelf across the room. This gives him the chance to wiggle, and break up the bites.

·         A new favorite of his is doing puzzles while he eats. He puts a piece in place and then eats a bite. There is an amazing puzzle app called “Jigty” that I like. This works well for him because he loves puzzles. Another child may get to paint one nail with nail polish for every bite they took, or race one car across the table for each bite they took – whatever interests the kid and is appealing enough to eat for.

I am sure that some would say what I am doing is unhealthy and I am creating an eating monster or that I should just let the kid eat and learn for himself. However, the good news for me in regards to these people is, its my kid so any mistakes I make with him are square on my shoulders. If I had a kid who wanted to eat and would actually do it when food was placed before him I wouldn’t be writing this post. Hopefully these ideas work for another family and they can come to see more days of willingness to eat and that magic connection of mental desire and physical action to chew and swallow.   

How the Mess Was Blessed, Again.

Watching baby Ruby with the three other kids makes it easy to see that they are not strangers meeting for the first time. Her eyes, always searching for the face of one of her siblings, and her humungous smile when she finds their eyes tells me that they are simply reacquainting here on Earth. We have been missing her, and we didn’t even know it until she got here. The blessing she has been to our hearts in giving us all more ability to love and more chances to show it cannot be expressed in a blog post, but its powerful and its very real to all of us.

So on her 4 month check up (a week after a CF clinic visit) with her pediatrician in late October concern was growing that she was getting sick. She was able to keep it together until the week after when she seemed to be slipping further and further towards another hospital stay. I, who already feel like I have been running on the lowest of household and motherly basic maintenance modes, was a wreck (sorry I forgot to sign your homework sheets so many times my bigs). All focus was on Ruby and her feeds and how to work through them and the coughing and the eventual vomiting induced by the coughing. The same pattern that landed her in the hospital in July was unfolding before my eyes and I didn’t know how to stop the train and felt helpless as I would be so so so so careful as I fed her and then again a coughing spasm would lose the work she and I had done over the past hour as she would cough, choke and vomit 6 times a day. We were a mess. I was sure we would be in the hospital again. The ironic part was that when she got sick last time she was in the hospital on the Sunday she was supposed to get her baby blessing in sacrament meeting at church, and she was getting bad again right before we were planning on blessing her again (Nov 1^st).

Lots of prayers were in our hearts. I needed to know what to do and I needed to know how to help her best. A not so irrational fear I carry is not taking a sick kid to the hospital soon enough and regretting it for the rest of my life. So I was into my pediatrician often. 4 times in 7 days, it would have been more but there was a weekend in the middle. But I kept in close contact with my CF team and had a well trained and prepared pediatrician who helped us through. In this instance, we slowly and so thankfully saw Ruby improve and come out of the hospital danger zone.

What I am ecstatic to see now is the chain of learning experiences that happened during our 1^st hospital stay that made it possible to avoid this one.

                First, my encounter with the large looming respiratory therapist one night in Ruby’s hospital room in July in which he told me of a fellow respiratory therapist on his team that purchased a hospital grade suction machine (on Amazon of course) when his baby got sick to clear out the snot and avoid a potential hospital stay triggered our research, attempted insurance involvement and approval, and eventual purchase of our own code cart grade portable suction machine. Or as it has lovingly been named in our home, the Snot Vacuum.

                Second, what I had learned about Ruby and how she responded with her feedings and how to hold her and burp her to maximize her ability to not cough during the feeds gave me the specified experience I needed to help my baby this time even better.

                Third, I saw that even though I full well knew I was a mess I had to control my temper, irritation, and anxiety because the second I did not the Holy Ghost (light and spirit of Christ) was not able to direct me, or more accurately I was not able to hear it and I needed to be able to hear it to know the step by step of what Ruby needed and when she needed it. Example : Suction her now, stop feeding her the bottle and take a break, use the percussor on her back now, etc, etc. The more I was able to feel calm enough to pray, silently most often, and control my emotions with my other beautiful and slightly neglected at the time but still loved (and fed and bathed I assure you) children and husband the better I was able to handle helping Ruby and allowing Heavenly Father to help me help her through it.

The point is, the mess was blessed. It is still a mess, but a continuously blessed one. As one of my favorite country songs says, a beautiful mess.

Now for some really exciting news, and a big fat ripple effect of Ruby’s hospital stay in July was that it gave the proof positive for insurance that although she is small she could benefit from a chest percussion therapy vest. So with the help of a dedicated and exceptionally awesome CF clinic team Ruby now officially has her own shaker vest. She will still start on 35% (while the other two CF vesters in the family can tolerate 80% and 100% power), but she has her own!  

These experiences show me like countless others in the past have that God blesses us amidst our trials. We walk through disappointment and trials but we do not walk alone, and we are being led to a better place.

Dialing It Up A Notch : How We Met Billy

 

I decided I would hate Orson’s g-tube or his “button” the night before Orson had his surgery in April. He was taking a bath and I just kept thinking over and over, “this is the last day he will have a normal stomach.”

But his resilience with the new addition to his stomach genuinely impressed us as parents. He willingly let us help him at night and we faithfully hooked him up every night (except Sunday’s when he gets a break from doing it).

Now 6 months later he still hasn’t gained any weight. A tremendous amount of work has gone into the button for no weight gain. I knew he had been fluctuating over the past 6 months but it was only between 34 and 35 pounds. We went to the CF clinic on October 20^th and his 35 pounds was confirmed on their scale. Such a bummer. Then the next day we went to the pharmacy to pick up the antibiotic Orson got prescribed from the clinic visit. It was a liquid. I was so mad at myself for not remembering to ask for a pill form. Orson hates liquid medicine and I knew it would be a monster battle everyday for him to swallow it two times a day.

As I was about to loose my mind, I remembered that one of the things we were taught in Orson’s stay in the hospital with his surgery is that any liquid medicine Orson can take through his button! It took a little convincing but he let me do it!

Then the next Sunday we were practicing for the primary program and the “Jonah” verse from “Follow the Prophet” slapped me in the face. The verse says :

                Jonah was a prophet, tried to run away.

                But he later learned to listen and obey.

                When we really try, the Lord won’t let us fail:

                That’s what Jonah learned deep down inside the

 

                whale.

My decision to hate the button, and be resentful of it was not helping Orson. I wallowed in my hate and resentment for 6 months doing the minimal amount of work. My hatred had caused me to overlook that fact that I hadn’t really tried to make full use of the button and best utilize its potential for Orson. So now I am dialing it up a notch. Frank is very encouraging and helps all he can. We already have been blessed with ideas in regards of how to better utilize the button. Frank asked Orson if he had ever thought to name is button. Orson thought that was a great idea. Orson picked the name, Billy. So now instead of a piece of plastic we resent, we are talking to Billy all day long. Orson is totally into his button having a name and has created a personality and family for Billy Button. Currently Billy Button has one of his kids in the hospital, but don’t worry they will get out before Christmas – according to Orson of course. We go in again to clinic for an official weight check in December and we are excited and hopeful to see the fruits of our labors.   

   

He Didn't Think We Could Do It

 
 

I consider myself to be many things, but never has any of those things had anything to do with running. However, I have realized over the past 30 (or so) years of my lifetime that something I have been naturally blessed with is the ability to be is a cheerleader for my family and friends (though never officially wearing a cheerleading uniform). So when last year, after completing the YMCA half marathon, Frank decided that we would all run the family 5K the next year together so that the kids could all get their own medal I was definitely interested.

 

I didn't then realize how impacted by the event our family and definitely I would be. The whole event was filled with such compelling literal and figurative life lessons. It was an experience that continually pointed me to the big picture of my and my families purpose on Earth. I know that we will continue to draw on the experience together as a family.

 

The first special moment I had came a few weeks ago. Frank had planned on waking up early on a Saturday morning and taking the kids on a 2.5 mile/run in preparation for the race. I needed to feed the baby before she would be ready to leave the house so they left without us to beat the heat. Frank told me where he was going to go on the walk and suggested that after I was done feeding the baby that I put her in the stroller and meet them along the way. They left and had been gone half an hour before I was ready to start with the baby in the stroller. The path they took was along the sidewalk path of the long canal by our home. The canal, with brick walls lining both sides of it, slightly bends and curves which makes it block a long distance view of what is ahead on the path. I could not see my family, but I knew they were there. I knew that eventually baby Ruby and I would meet up with them. Soon enough I started to hear what I though were the echoes of their excited voices but I could still not see them. Then after covering a bit more of the distance their voices became louder. Pretty soon I could see them. Then I began to hear them shouting, "DAD I CAN SEE MOM, THERE SHE IS DAD I CAN SEE HER!" Soon we were together again. They were so happy to have met us on the path and we happily walked the rest of the way back home together.

 

As I experienced this, my heart was moved to thoughts of the plan of happiness that Heavenly Father has for all of His children. That plan is family. He wants families to be together and work together to get back home to Him. He wants us to love each other so much that we cheer and run to each other on our pathway through life and help each other along the way. We can do that by having faith in the Lord Jesus Christ, repentance, keeping our covenants (such as baptism), and listening to the Holy Ghost.    

 

The second of many cool things that happened came with our oldest son Charles. He is a man of rules and finality. He heard the announcer at the race say that we would only have 2 hours and 20 minutes to complete the race before they had to open back up the road for cars. Not understanding time so much yet, being 6 years old, he panics and has great anxiety over being timed in any capacity. Hearing this news of having only 2 hours and 20 minutes struck fear in his heart. He told me later in the day, hours after the race was completed, "Mom I was so scared that we couldn't do it. I did not think that we could do it. I didn't think we would finish in time."

 

Knowing this about Charles made what happened to him during the race very interesting. He took it upon himself to run as much as he could. He being our man of rules knew that we had stressed that we wanted to stay together as a family during this race so no one would get lost, but he also knew that during all of our practice walk/runs that Frank would give him a landmark in the distance that he could run ahead to and then wait for the rest of the family. He asked Frank to set landmarks for him the whole way. He ran to them, rested, then was ready to run ahead to the next. His gumption inspired his older sister and younger brother to also run. Orson, the youngest at the race, had woken up several times the night before the race to ask me "Mama is it time for the race yet." So he was exhausted and struggling at first. But as he saw Charles' example he too wanted to run. He wanted to be fast and awesome like Charles. Maelee, not to be out done by her brothers was likewise inspired to run.

 

Then as Charles was looking back to us as he made it to the mile 2 sign he tripped and fell onto his knees. The road rash was deep and hurt him badly. (It was gruesome enough that he caught the attention of race staffers and right after they gave us our medals a man approached us and told us that they had already alerted first aid, and the EMT would be waiting for us.) He was crying and upset. He did not want to race anymore. Frank took him aside. He told Charles that he needed to make a choice. He needed to decide if he would let his fall ruin his race, or if he would get back up and keep going. Charles got up and ran, literally with blood dripping down his leg, to the next landmark. He kept it up and finished first across the finish line. 

 

To see Charles start out doubting, continue with determination, fall down, then choose to get up and carry on and finish first meant a lot to me. He could have asked to be carried. We would have done it. He could have decided to walk slowly and finish. We would have walked with him. But instead he got up and decided to keep running even if his knee was dripping blood. He made a choice and finished running. We all were very proud of him. 

 

Many other details and experiences of race day made it a worthwhile and memorable family outing. While I continue to agree with the old cowboys in the saloon in "Back To The Future III," who thought the idea of "running for fun" was a hilarious joke, I will now be an avid supporter of any future family races we can do together. From watching Frank guide and encourage the kids through the training and race day, to hearing Orson exclaim "MAMA I FINALLY GOT A MEDAL," it was incredible day for the Adams family.  

 

 

 

 

P.S. - If anyone ever wonders which parent Orson inherited his goofball smile from, all arrows apparently point to me.

 

P.P.S. - When Charles told me that before the race started he didn't think we could do it, I responded with the question "Well we did finish what do you think now?" He said, "we worked together as a family mom and we did it." Then I thought, "Is someone feeding this kid his lines or what?" #bigpayoff

Robbing Poor Newleywed's. The Joke Is On Them.

This Columbus Day 2015 will make it twelve years since Frank and I had our apartment robbed. We lived ultra close to the community college we both attended. Our apartment complex was nestled in a massive area of other apartment complexes. Tons and tons of all kinds of people living literally on top of each other. I was raised to be pretty cautious, so to help myself FEEL safer as I walked to the car each morning to get to my 6:45am math class I would carry a copper pipe. It was about a foot and a half long and roughly cut so both ends were jagged. I would walk down the stairs through the dark sidewalks and creeping parking lot to my car, holding the pipe in my hand up in striking position all the while looking around constantly and jumping at every shadow. My husband, who at the time was a plumber, had already left for work (that’s where I got the copper pipe, a tossed away piece from one of his construct sites) or I would have had him walk me to my car. Looking back now I surely appeared insane to anyone who may have seen me, and chances are if I was attacked the copper pipe wouldn’t have helped me, but I needed to feel like I was attempting to protect myself.

Sometimes I would also pretend to talk to someone on the phone. My Mom and Dad worked opposite hours when they were first married and she walked into her home one night alone to see the last half of a man’s body stepping out of one of her windows. Too afraid to walk back out her door and too afraid to be alone she called her Aunt Fern and talked to her, long after Aunt Fern hung up my Mom kept talking until my Dad got home. So using her technique I would sometimes have fake phone conversations on the way to the car through the early morning dark and creepy apartment complex.

The first fall we lived there, Columbus Day, I got a phone call from my husband at the salon I was working at. Our conversation went something like this.

Husband: “Did you leave the door open when you left for work today?”

Me: “No, why would I do that. Why would you ask that? Of course I didn’t leave the door open.

Husband: “Well it is open now.”

Me: “WHAT! Don’t go inside. Call the police.”

Husband (completely ignoring me and going inside anyway): “Well it looks like a wreck in here.”

Me (freaking out, screaming into the phone outside of the salon while the other stylists are out there on smoke breaks watching and listening to me): “DON’T GO INSIDE! CALL THE POLICE! WHAT IF SOMEONE IS STILL INSIDE?”

Husband (walking around apartment): “Yeah, we got robbed. They wrecked every room. They pulled everything apart. Yeah we definitely got robbed.”

By the time I got home Frank’s relative who worked then as a detective for the police department was there talking with him. This sweet relative was good at watching over us. Soon another officer arrived and he dusted for prints on the kitchen window that the robber(s) broke to get into the apartment. We went over with the officer the things that were taken, which was a very short list in regards to value, but a high cost in regards to our emotional well-being.

They pulled every drawer and shelf out in our living room, then moved on to the one bedroom in our tiny apartment. They stormed our closet. The burglars, showing their age, took Frank’s very old Sony Play Station, his Adidas shower sandals from his mission, and the small handful of souvenir hats he had bought in Australia on his mission. They quickly found my box with all my tip money in it from the past couple of weeks at the salon and my state quarter collection. They emptied my jewelry box out. I had no jewelry that was worth any money but I did have a collection of unique novelty wrist watches that my Mom had given me as Christmas presents over the past couple of years. They took any backpacks or bags we had in the closet and filled them with the stuff they took. One of the bags they took was my temple bag. They did not empty the bag out. The temple dress made from gorgeous white eyelet fabric that my Mom had made for me that I had gotten married in was in the bag.

The robbery totally freaked us both out. I was so scared to be alone in the apartment. I one can imagine after picturing me walking through a parking lot with a copper pipe raised in my hand, I went to even more extreme and ridiculous precautions for a while in my attempts to protect myself and feel safe. Definitely added to my natural paranoia. It was not a hard choice a few months later in regards to if we would renew our lease or not.

It is important for us to remember “the robbery of 03’.” And it is crazy to think that so many years have passed since I was walking through the parking lot with a copper pipe raised and ready to strike. It turns out that Frank didn’t need those really cool souvenir’s to remember the growth, change, and increase of faith he experienced on his mission to Australia. Not having my gorgeous homemade temple dress did not change the fact that my Mom took the time to make it for me and show me her love through that gift of time and talent. Going through that experience together made us a stronger couple. We saw quickly that stuff was stuff and once it was gone whether taken, lost, or ruined we still had each other. They never caught the thieves, although we have pictured them often wearing Frank’s Adidas shower sandals and Australian Cork Hat and my watch with a wrist band made out of basketball leather all while playing a very old Sony Play Station and admiring my state quarter collection. We are positive they have all our stuff somewhere still. It wasn’t worth anything, but it was surely too awesome to throw away.      

Just What I Needed!

I am grateful to know that I am a child of God. He loves me! He lays blessings at my feet for me to pick up. One of those blessings came tonight when I got to go to the General Women’s Meeting with my daughter, sister, and my mom. I know there will be a time in my life when I won’t be able to attend a meeting like that with all of them so its very special to have had the chance tonight.

Anyone who needs uplifted, encouraged, assured of God’s love for you or just to feel a bit shinier should listen and or watch the meeting. An hour and a half very well spent. Plus this meeting is an exciting stair step to next weekend when we get to enjoy General Conference!

My method of taking notes in this meeting (not a new idea I realize) was to pull out pieces of things that struck my heart. Unfortunately I did not write down the names of who said what. Here are some of the pieces I picked from tonight.

-“Looking out through Heavenly Father’s window,” was such a sweet way of saying that how Heavenly Father sees us is not how we so often see ourselves or others. While from my window constantly pick myself apart and see myself as immensely lacking, He sees me through his window as someone who is trying hard to not give up and waiving and cheering to me to keep on walking and whispering good ideas to my heart. “Don’t you give up, you keep walking…believe in good things to come” (that is one from J.R.Holland).

-“Find the peace to breathe again,” puts into words what happens over and over again as I go through the human cycle of hitting low mental places and then finally when I stop walking in the dark and turn to my Savior Jesus Christ to literally “find the peace to breathe again.” Loved it.

-“The atonement bears no scars,” was something that I knew but how she explained it and brought it to my mind again made it clear that when I sincerely repent of mistakes I can let go of those things. I don’t have to keep these mistakes, these sins on my shoulders and moll over them and let them continue to push me down. But I can be scar free through the atonement of Jesus Christ.

-“This earth is the time to prepare to meet God NOT to receive all of our blessings,” was an awesome reminder to me to keep my chin up through tough stuff. If I want to be ready to meet God I have to walk down my path, the path He is laying out for me each day, and know that if I keep on walking and trying and looking to Him for direction I will be ready to be with Him again.

I just loved it. I loved that I had the privilege of being there with family. I loved that I had my 8 year old beautiful daughter with me. I loved that every word I wrote down in my notes she quickly wrote down in hers as well. I loved that by her action of copying my notes I had a big huge flashing road sign reminder that she is watching me and I need to be my best. I loved that the whole meeting gave me encouragement and reminders on how do to just that.