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. 

Double Bunk Us I Dare You

They did it together. Being hospitalized as brother and sister who share the same disease. Orson and Maelee. Maelee the big sister who had done this type of hospitalization before began from the start to be protective and ever the teacher to her younger brother. He needed her support and she gave it. As a mother who sees their relationship I was grateful for this turn in the tide as the two usually have the hardest time getting along together. But her mother heart wrapped around him and she did everything she could to comfort and help him while at the same time getting through the hospital stay herself. Maybe it was a good distraction for her.

When Orson was told that he would need to fast to be prepared for his PICC placement and bronchoscopy Maelee quietly told me that she would fast as well. She didn’t want Orson to be sad seeing her eat. So we all fasted and waited. I was there alone with the kids so my husband could get at least a half day of work in. My younger brother came for a visit that morning. He was also a welcome and lovely distraction from the waiting, because that is what the hospital is, waiting. That day we were waiting for Orson to have his PICC placed and bronchoscopy under anesthesia scheduled for noon, and also waiting for Maelee to be called in by the PICC team to place her line in the procedure room on the same floor we were staying in.

The kids received lots of instruction and explanation on what a PICC was and how they would have them put in. This was done by a cheerful and kind Child Life Specialist named Kylee who was absolutely incredible at her job. I was worried that the procedures for both kids would collide and I would not be able to be with one of them. They pulled Maelee back into the procedure room, just a few doors down from where they were staying. Orson was so scared for his anesthesia, he hates everything about anesthesia and he knew it was getting close to when he would have to do it so he was hesitant to watch me walk down the hall with Maelee but he told me to go with her.

She was really being taken such good care of by a room full of capable and kind women. They were all so upbeat and caring. Kylee was right at Maelee’s head all masked and gowned so she could be so close to her. She told me she would stay with her throughout the whole procedure so that I could go with Orson if need be. Maelee was extremely brave and was doing so well but I could hear the fear still right on the edge of her voice. Orson’s nurse came in at that time to let me know it was getting close to Orson’s time for preparation downstairs. I told Maelee I was leaving for a minute and ran as fast as I could down the hallway because I knew he’d be upset waiting for me.

He was balled up in the corner of the room crying. He had just tried to escape the room running down the hall looking for me as soon as the nurse told him it was time to change into a gown for the procedure. He got scolded for leaving the room and was sitting holding his procedure gown crying as far away from the nurse as he could get. I calmed him down and helped him prepare and then ran back down the hall to let Maelee know I was leaving with Orson and thanked Kylee for being so generous with her time and staying right by Maelee.

Orson was absolutely inconsolable. Any time that he could remember anesthesia had either lead to him waking up with a plastic straw sticking out of his stomach that still hadn’t been removed three years later or vomiting blood for hours after waking up. On top of that the idea of being forced to sleep makes him angry and feeling powerless to stop it. So when transport arrived to wheel his bed to the OR he wailed the whole way there. I don’t blame him. He sobbed and cried out in frustration literally every second until the mysterious vile chemicals of anesthesia commanded his body to stop. It was torture for him and torture for me. The child life specialist on the floor there convinced the anesthesiologist to let me go back into the OR with him while they put him under so he wouldn’t have to be alone. It was the first time I had been allowed to go beyond the usual “goodbye doors.” I tried to comfort him throughout this process. He asked to pray together so we did that a couple of times. I tried to absorb all of his emotional pain but there was so much I wasn’t enough of a sponge. I watched them plunge (the nurse didn’t go slow he was trying to get this kid to stop screaming) the milky concoction through Orson’s IV while Orson screamed that it was burning and I wanted to punch all of the men in the room (there wasn’t any women in there which for some reason also made me furious that it was all men). As I watched him instantly go limp after screaming the previous hour all I could do was give his hand a kiss and be lead away to wait. It wasn’t supposed to take as long as it did but between waiting on the pulmonologist to arrive, finish, and complete the bronchoscopy and then trying to find a vein large enough to PICC Orson it took twice as long as they said it would. One of Orson’s issues with anesthesia is the moments he’s alone in recovery and waking up without me. Because of this I was pacing getting more worked up and more worked up with each minute. Oh and we had a fun surprise right before we got hospitalized, our insurance deductible that had been met days after January 1st of this year got mistakenly reset unbeknownst to us July 1st (still trying to clean that mess up) so I was fielding calls about medicine during this anesthesia prep time.

In the mean time Frank came to the hospital from work and was with Maelee so at least she wasn’t alone anymore. Finally when the nurse came back to get me I just lost it. I wasn’t crying yet but I was so upset I couldn’t complete a sentence just spewing angry half sentences like the wind was knocked out of me. Then when I got to him he was already awake which then made me start to cry with him because his fear came true and he had woken up alone. I couldn’t describe to the nurse how deeply upset I was. I was so disappointed that I had let him down and felt so helpless as I watched him again get so sad and disoriented watching him live his dread. It was a small procedure. I understand that. But every time he goes under it feels like reliving all the trauma. The devastation and pain he felt as he sobbed in my arms so confused and hurting after g-tube placement surgery, and the feeling of catching a bowling ball in his nose and throat and then repeatedly vomiting blood after his surgery in December of 2017 all those memories just hang in the air around us and its awful. Its difficult not to feel like its your fault as a parent when your child is in pain. Surely there was something you could have done to stop this or fix it but you failed and now your child is in their pit of despair and you have to slowly and carefully do anything you can to coax them out of it.

Then PICC day was over and we had rainbows of visitors everyday to go with the waiting. Waiting for each doctor to come in and give us a two to five hundred dollar handshake everyday, and IV’s to run, four vest treatments a day, and trying to convince the kids to eat.

Maelee has never struggled eating well, but Orson has struggled with eating enough food to sustain life since birth. This bothered many of his nurses who would pepper him and then Frank or I whoever was in the room with questions of why he didn’t eat more. This would make him cry. He did find a way to successfully get his blood glucose measured. When the nurse would come to check his sugar he would call for the parent in the room to come and hold his ears to block the sound of the little machine. He didn’t mind the poke so much or seeing the blood even but the sound of the machine was very grating to him. Good news though his numbers looked swell so they stopped checking after a few days.  

The picture we took before I drove Maelee and Orson to be admitted to the hospital.

The picture we took when I came to switch places with Frank the night of the day my friend had brought Charles to spend the day visiting his siblings.

We switched parent schedules on the weekend when Frank wasn’t having to go into work. He slept at the hospital with the kids on Friday and Saturday night. Which gave me the chance to be the one at home waiting. What was special about it was that because of how the visit played out Frank and I both had alone time with each of the kids at one point or another to express our love, spend time with, and listen to them. Charles and I stayed up later than usual working on a puzzle and with Charles legos are always involved so that was fun too. Ruby and I randomly got cauliflower soup from Zupa’s on her request. I have to admit I was dreading church on Sunday. I felt so fragile and tired and I didn’t want to get into in depth conversations about the hospital because I was worried it would make me cry. But we went to church anyhow. Myself, Charles, and Ruby and once I got through sacrament meeting and into my primary class and sat with my CTR 7 class the most comforting feeling of love stayed with me the whole time. I forget how it came up but each of the 7 year olds in the room started asking me questions about the kids in the hospital. But it was so sweet, kind, and innocent that it was easy to talk about with them. Then without being asked during the opening and closing prayer my primary kids prayed by name for each of my children. I felt so loved.

After church waiting for news from Frank was killing me. The kids had a lung function test to do scheduled for noon, then they would hear from our pulmonologist and she would let us know if we could come home that day or Monday or Tuesday. Then I started getting calls from the home health care company who would be supplying us with our home IV supplies and nurse visits. I started to panic thinking about being responsible for running two IV schedules. So I did what seemed the most natural and beautiful thing a mother could do on a Sunday afternoon. I baked cookies. These are spectacular cookies by the way (Neiman Marcus cookies from that ancient e-mail forward years ago – a family favorite!) that I knew I would have to resist eating two dozen of in thirty seconds because that’s what Kamarah last year would have done, but Kamarah this year has lost 55 pounds and is going for 15 more. But I baked anyway because the process itself was what I needed that day not the eating. It worked. Baking made me feel better and more like a regular mother and not a mother waiting for IV meds to be delivered.   

The IV and vest schedule I wrote out to keep things straight.

The most exciting grocery store trip ever.

 When they came home we ran their IV’s through their PICC’s and it was fine. It was hectic and touch and go for sleep but we got through each day hunkered down happy to be home and not stuck in the hospital room anymore with insanely expensive handshakes from doctors and nurses breathing down our necks. Maelee was so concerned with us having to get to her arm in the middle of the night for IV changes that she would sleep in a very specific thoughtful way with her PICC arm laid nicely on her pillow. The day after we came home we needed to go to the grocery store to replenish the necessities. Both Maelee and Orson practically raced us to the car when we asked if they wanted to go and walked around in Fry’s like it was the bright lights of Paris so happy to be somewhere besides room 320. It was comical and fun to watch them be appreciative of home life.

Now our goal is to ring out the towel of summer for the next few days. It’s that special nostalgic time of year for me when I get sad thinking about having the summer be over and the kids gone but I also want to do a cartwheel because school starting means the expectations of Mom performing entertaining magical experiences stops as well. Cheers to a long and lovely break before our next hospitalization.

Neiman Marcus Cookies

1 cup butter

1 cup butter flavored shortening

2 teaspoons soda

2 cups white sugar

5 cups oatmeal

24 ounces chocolate chips

2 cups brown sugar

1 teaspoon salt

1 - 8 ounce Hershey bar cut into pieces

4 eggs

2 teaspoons baking powder

2 teaspoons vanilla

(9 minutes in 360 degree oven or when slightly browned on top)

PS - Having your insurance deductible reset and then trying to convince people it was a mistake and your deductible has indeed been met is what I can imagine would be similar to sitting in a maximum security prison and trying to convince everyone your innocent. No no no I realize the prison scenario is much worse but its pretty ridiculous none the less. 

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. 

  

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 24^th.

“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 29^th, 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.

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).