A Cf Is Not Forever Christmas Story In February

In our designated corner of the procedure room, masked and ready to cheer for the PICC'ed

I was surprised that Maelee ended up in the hospital this past December. I can never guess right when it comes down to it if she needs IV antibiotics or not. The previous year, December of 2017 we had Orson’s surgery and the timing of it had him and us as a fully functioning Christmas machine down and out until literally Christmas Eve, so I thought for sure (not that this makes any rational sense) it was looking like we wouldn’t have any issues for Christmas 2018. But I was wrong. Fortunately even in my October minds blissful ignorance of December’s hospital stay Heavenly Father knew I would need to prepare early. It was brought to my mind, “get ready now for Christmas,” all the way back in October. My mom happened to come over on the day after I had bought the Christmas presents (on a smoking hot sale of course) and she helped me wrap them. She kept saying, “whoa Kamarah I am so proud of you for being ready for Christmas this early.” It was not my idea though I was just listening to the whispers of my Father who loves me and who knew I would not have the chance to procrastinate for December of 2018.

With this being her second hospital stay for the year it felt to her like she was just there. They keep putting her in the same approximate floor and room area and it’s a repetitious routine of being trapped and waiting and waiting and waiting until we are allowed to go and finish at home. It was difficult for her to miss all of the school and friend Christmas activities. She felt left out of things and lonely. But she also had some very supportive friends, school, and church teachers who came and did everything they could to help her feel remembered and included.

As I watch her mind and body take these steps up in an unceasing uphill battle with the repercussions of her disease I’m continuously amazed by her strength. Although she has no option of going through the challenges of her body she does have the choice on how to face them. Which attitude pants is she going to put on? Well bless her heart when it comes right down to the tension filled hospital decisions and then even more emotionally filled long stretched out days and nights of her hospital stay she chooses to put on some really beautiful attitude pants. My favorite for instance of this particular December 2018 hospital stay was her courage with her PICC placement. November of 2016 she got her first PICC and it was placed under anesthesia. Then July of 2018 they gave her a dose of Versed to get her through placing it in a procedure room and not put her under. Finally the big drum roll of December of 2018 she was able to muster up the courage (and this is them threading a line from her arm to her heart while she is awake and alert) to get her line placed with no Versed at all. She was of a fully sound mind and body for this PICC placement which just to me shows her absolute fight and courage for success. I continue to be so proud of her.

It was rough to have her be trapped and struggling in the hospital during the busy and exciting Christmas season and then came the familiar strain of helping the home kids feel happy and well in tandem with the hospital kid feeling happy and well. But again we continue to be blessed with family angels and friend angels who help us get through it all.

When she was able to go home to finish her IV antibiotics I was feeling pretty sorry for myself. I was upset that I wasn’t able to get out Christmas cards as early as I wanted and frustrated I wasn’t able to do the seasonal making and baking that I usually did. I was focused a great deal on things that didn’t matter most. It seemed important to me though and I was sad. Then I got a text from an unknown number in my phone. Someone was asking me how Maelee was.

I was grateful for the kindness of the check-in and didn’t want to be rude so I gave them an answer then asked how my mysterious texting friend’s family was as well, figuring this would clue me in on who they were without me being a jerk and not knowing who the number was. The answer took my breath away as I realized who had taken then time out of their day to text me.

It was a beloved friend and example in my life who I usually talk with face to face or through Facebook messenger. This friend has a tremendous load to carry in her life and does it with such grace, confidence, acceptance of God’s will, and kindness and concern for others that I couldn’t believe that with what all she does everyday for her family that she would take the time to check on me and Maelee. It was a very powerful moment for me of feeing the love of God in my life during the Christmas season. I also quickly added this sweet friend to the contact list in my phone and expressed my gratitude for the love she allowed me to feel on that December evening. What a tremendous lifting hope it is to be surrounded by people trying so hard to follow the example of Jesus Christ.

That is the end of my Christmas story in February. It was a rough month and different than the other two CF exacerbation stays she’s had. This time she sounded really terrible and everyone told her that constantly. It was like taking a beating mentally considering the work shed been doing for her lungs already. It seemed so insulting and defeating to hear that they weren’t reacting positively to her work and effort. The bronch shows her lungs were/potentially still are recovering from having very thick (cheese curd consistency) mucus plugs throughout the bronchable areas. Maelee will have her second sinus procedure (procedure, surgery, whatever you want to call it but her ENT will be scraping all of the compacted bacterial tar out of her) in March to hopefully alleviate the constant head pain, nausea, ear aches, and overall head throbbing she deals with always. The current idea is that the bacteria that is continuing to give her lungs such a work out is also in her sinuses and they in turn are re-infecting each other. She continues to work hard and we continue to encourage her to work hard to stay on top of her treatments. Beautiful discoveries are happening in both her life and ours as parents  as we work through the regular and universal growing PAINS of life and the strange world of CF mixed in.  

Days are easy in the hospital, nights feel sad and

all emotions are coming out.

Mornings in the hospital are wiped of the negative

night emotions because your just so happy the night is over.

Getting to take a walk out of the room after 72 hours inside is

really very exciting.

Maelee's dear friend and child life specialist who is allowed to

be by her during PICC placement. She is an angel on earth. 

The procedure room and Maelee being filled with courage

getting her PICC like a champion of life.

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. 

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.

Horrific Invisible Rollercoaster

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

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

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

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

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

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

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

Foul Nights Wake Me Up When December Comes

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

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

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

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

They Shatter My Doubts

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

They shatter my doubts, these guys right here.

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

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

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

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

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