Monday, July 10, 2017

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!

Monday, June 19, 2017

When Her Pancreas Was Broken From The Start

Me and Baby Maelee 10 years ago.
Can I just say my hair has never been
this long since this picture? #goals
 As I sat in the CF clinic exam room 10 years ago and our dietician was explaining to me the details of my baby not having a functioning pancreas I learned that she could, would, and does experience frequent and often constant stomach pain and cramping. I remember feeling relieved that I had justification for holding her even more. I hated to think that my tiny innocent baby could be hurting and not be able to tell me. As she has gotten older it is even more difficult to hear her say her stomach hurts and watch her suffer and know all the meds she is already taking and that it isn’t enough to end the pain. Watching my kids struggle with severe pancreatic insufficiency and their CF in general, has helped me to remember that what you see on the outside of a person is not at all reflective of the struggle and pain they are experiencing on the inside.  

Watching through mother eyes as my oldest has experienced rough and constant stream of dealing with her stomach issues since birth I was recently touched when I thought of her in relation to “a certain woman” referenced in the New Testament who had the issue of blood for over 12 years (Mark 5, etc). The woman “had suffered many things of many physicians, and had spent all that she had, and was nothing bettered, but rather grew worse” – Mark 5:26). “And, behold, a woman, which was diseased with an issue of blood twelve years, came behind him, and touched the hem of his garment: For she said within herself, If I may but touch his garment, I shall be whole” (Matthew 9: 20-21). I want her to have faith as this woman did to know that through Jesus she can and will be healed. I want her to fight through the throng of people to get her arm stretched out enough to touch the hem of Jesus’ garment. I know she can be that woman and is becoming that woman now.

I also know that not all healing comes on earth. So I need to help her to wait. That is one of my jobs as a mother. Help her to wait with faith and hope. That one day lung function and pancreatic insufficiency won’t be a problem for her and to be happy and enjoy life while she waits for that day.

Her glamorous ring.
Being the annoying song lady.
I'm not always perfect at compassion and motivating because there are days when I've run out of gas myself it seems. However, it is the little things that the Holy Ghost helps me to know will help. Things that are tiny in thought but powerful in purpose. Things like, finding a flower ring on clearance in the hospital gift shop and walking it up to her to find her awake from her post op nap vomiting blood. I wasn’t planning on getting anything but found the ring and was so happy to be able to give it to her during that difficult recovery. She was thrilled to wear the ring on her IV hand so it would still feel like a beautiful hand. Or when earlier this month when we were going to a follow up appointment that she was extremely nervous for I made her a hat the night before so she would have a little something new and special to wear to the appointment. She is my daughter after all so I knew a little “accessory courage”, one of my favorite kinds of courage to lighten the morning would go a long way (don’t worry I know courage comes from your heart but a fun hat or a pair of earrings can go a long way too in my warped opinion). You never know when you make someone something if they will really like it or not but it was just the thing to help her be positive through the appointment. Or a month before her hospitalization she was getting sick and we had months ahead signed up for a family 5K. She was really dragging and struggling throughout the race. A goofy song I had heard on the radio came to mind and we sang it together to get through the race. Something always comes to mind when the anxiousness of the moment presses on my own mind as I watch her.

Accessory courage at its best on CF clinic day.
When I was searching for some words I needed to hear this week I found something even better. It was this talk by Boyd K. Packer. He explains that we all (especially family members of people struggling mentally and physically) need to “become like angels who “move the water,” healing a spirit by erasing loneliness, embarrassment, or rejection…..If our view is limited to mortal life, some things become unbearable because they seem so unfair and so permanent. There are doctrines which, if understood, will bring a perspective toward and a composure regarding problems which otherwise have no satisfactory explanation…….That day of healing will come. Bodies which are deformed and minds that are warped will be made perfect. In the meantime, we must look after those who wait.”

I feel and see the love of Heavenly Father in my life as I live my life as a mother to all my children.

Monday, June 5, 2017

Comforting My Babies (Wrapped In Love)

I’m so grateful that I come from a family of sewers. Sewing has brought to me immeasurable amounts of joy, therapy, and much needed self-expression since I was a tiny kid threading needles back through my mom’s quilts stretched on quilt frames. Because I love sewing “sew” {so} much I try all sorts of projects but the most satisfying by far is making quilts for my kids. I say “quilts” in the lightest of terms. Don’t picture some elaborate pieced out masterpiece, instead picture something sturdy with color done in large blocks. I love that every bed in my house is covered in a quilt that I made myself. I love that to prepare for big occasions such as a baby being born, or milestone ages reached that I have made a quilt for my kids for that. It’s a journal of sorts. Something that is so special to me that I hope translates into that fabric and batting and binding and when they lay down to sleep or be comforted or warmed that they know their mama’s hands have been there to help make that happen.

Most recently I finished Charles turning 8 quilt because my accidental but then firmly abided by tradition has been to make a baby blanket, then a blanket when my kid turns 3 years old, then a blanket when they turn 8. I suppose I’ll carry it through to ages 12, 16, and then when they live on their own perhaps - - - we’ll see but for now we have those first three quilt ages established.

When I look at the quilts I remember what I thought about when I made them. I remember what was going on in our family and I love that seeing the fabric is what makes the memories come to me.

So far the two eight year old quilts that I have made have been special because turning 8 in our family means that you’re making the decision to follow Jesus Christ and get baptized and receive the gift of the Holy Ghost. The 8 year old quilts are made from clothes that my kids wore throughout the years leading up to their 8th birthday. I want them to remember what they wore as they first learned about making choices and fixing mistakes and learned of their Savior Jesus Christ.

As I was just last month making Charles 8 year old quilt I thought about 5 years ago when I was making him his three year old quilt. I remember being so worried that I would not finish the quilt on time for Charles 3rd birthday because Orson was so sick and I was not able to work on it as much as I wanted. The quilt meant a lot to Charles and he reminded me often of how excited he was to get it from me on his birthday.

When I realized that I definitely would not make my deadline because Orson had ended up being admitted to the hospital I remember being a wreck and tearfully asking my Mom if she would finish it for me because I knew how disappointed Charles would be if he didn’t get it as he was hoping. So that particular quilt is especially special because it has the hands of Charles grandmother and his mother in it. It was given to Charles on the morning of his 3rd birthday in a house decorated by Dad and without his baby brother or Mom there to sing a birthday song. But thanks to my Mom, he DID get it and the legacy of fabric and thread continues over another generation of woman in my family.

I love the analogy of a quilt being like the Holy Ghost (AKA the Comforter, especially applicable in this case). “He is the Comforter (John 14:26). As the soothing voice of a loving parent can quiet a crying child, the whisperings of the Spirit can calm our fears, hush the nagging worries of our life, and comfort us when we grieve. The Holy Ghost can fill us "with hope and perfect love" and "teach [us] the peaceable things of the kingdom" (Moroni 8:26; D&C 36:2).” (link to quote and more info here).
To get to my point, I cannot sing. I cannot dance. But darn it I can sew a quilt under pressure.

I searched high and low amongst my 11,000 jpegs
but couldn't find the quilt pictures I wanted. This
one is adorable though so I'll post it. Picture
a really sweet picture of all three kids wrapped in their
3 year old quilts on Orson's 3rd birthday. Its adorable.

My Fabric Journal. 

Maelee’s baby blanket (2007): Done in Mary Engelbreit (another obsession of mine) flower style. She being my first baby and my coming off working a full time job we had a little money to buy furniture and fix up her room which was all done from the colors in her quilt.

Charles baby blanket (2009): Lots of fish hand appliqued covered Charles baby blanket. It matched the theme I enforced for our 2nd CF Great Strides Walk. We couldn’t afford to have more shirts made for our walk team so I made fish for us all to pin on our shirts from the year before. They matched Charles quilt.

Maelee’s 3 year old quilt (2010): My older sister who lived close by would pick Maelee up and take her to preschool for me so that I could finish Maelee’s three year old quilt. It was such a kind service that she did for me, simple and kind and needed. I was getting big with child as they say with baby Orson at the time and had a two year old and I remember how difficult it was to spread out my squares on the floor and get up and down like I needed to. I got that one done because of her.

Orson’s baby blanket (2011): Orson’s birth hit me like a fleet of semi trucks so it took a while to get his quilt done. My Mom actually picked the adorable cowboy fabric and the green satin on the back was the same fabric I had used to make the wedding neck ties for my brothers wedding. His quilt didn’t get done until at least 6 months after he was born, but it did make it to the hospital with him when he was admitted at 7 months for his first CF exacerbation.

Charles 3 year old quilt (2012): We were so devastated to be in the hospital with Orson on Charles birthday. We try to be very sensitive to him not getting the short end of the stick due to being the only one with CF and this felt like breaking that rule majorly. But as I said, my Mom rescued me and got it finished on time.

Orson’s 3 year old quilt (2014): This one looks as much like Charles as I could make it despite a different color scheme because those boys were and are inspirable. They have become such special friends to each other and I loved to be able to carry on that continuity. For my own selfish reasons I’ve always hoped that orange would be Orson’s favorite color so that is what I made his quilt with. You know, “O”range for “O”rson I thought would be cool.

Ruby’s baby blanket (2015): she had so many truly beautiful real deal quilts given to her that I felt my large blocked colorful sturdy ones would be inadequate in comparison, but I made her one just the same. It is from one of my favorite items at IKEA, the precut fabric block bundles they sell tucked away in a little corner of their textile section. The prints are all totally whacked and don’t match at all which is absolutely how I felt when she was born and I was sewing it, but it turned out beautiful despite my crazy fabric choices, perhaps even because of them.

Maelee’s 8 year old quilt (2015): This project was due 7 days after my 4th child was born and I was definitely late turning it in. Maelee was old enough that I could talk her off the cliff of “mom doesn’t love me because my quilt isn’t done on my birthday” routine, but it was touch and go for a while. All of that summer was a big hot mess, but the quilt was finished before school started in August made with the dresses Maelee had worn all of her growing up to 8 years.

Charles 8 year old quilt (2017): This was a really fun sew. I was feeling happy that summer was near and that baseball and play season was almost over. I enjoyed making the blocks out of Charles t-shirts and remembering how I got most of them on various black Friday clothing hunts into the wee hours of the morning with my black Friday shopping posse.

Sunday, May 21, 2017

Throwing Up In Front of 800 Children

It was the kind of week where you throw up in front of 800 people.

Monday: Primary care physician says Ruby’s lungs sound junky enough that he wants me to get into the CF clinic right away.

Tuesday: Frank takes the day off work to get Ruby to the CF clinic first thing in the morning while I serve the day enjoying the jury selection process in downtown Phoenix from 7am to 4pm.

Thursday: I am sitting in the back of the packed school auditorium proudly watching my second grader (The Real Prince Charles) perform his 2nd grade fish play, "Sounds Fishy To Me." The Baby Ruby Forever on my knee starts the much dreaded puke cough. She had done it earlier in the day, enough for even the King of Brave Orson to ask “is Ruby going to puke Mom,” but she never did puke. She hadn’t been eating much for the past couple of days and I was so worried about her that I cooked up some of the only thing she had willingly eaten that day so far. Bacon.  

Yes I had packed her a sandwich bag full of bacon and a sippy cup full of calorie doctored up orange juice (since she was also on strike from drinking her straight up half and half) to eat on the way out the door for the Real Prince Charles’ school play.

The wet harsh cough begins about 10 minutes into the performance. The back quarter of the assembled school children all turn to see who is making that terrible noise. I turn her towards me and try to be nonchalant while she makes a few more terrible sounds and the back half of the kids turn around to spot the sound. Then bam. Up comes a terrible mixture of bacon, snot, and OJ. Once. Twice. Three times a lady I’m darting out of the auditorium through to the outside doors trying to be responsible and not spill any or get anything one anyone else. You know basically smashing barf all over myself and Ruby.

I left my poor mother sitting on the bench to see at that point surely all 800 children of the school turn to witness the great puke display.

But as we have found with our kids this unfortunate experience was a necessary evil at this young age when they have terrible allergies combined with the nasty thick CF snot they can’t clear the beast on their own. They must throw it up to get it out. Yuck. Sorry to all who had to witness the upchuck. BUT I promise I had been working so hard to help her with extra vest time, inhaled mucus thinners, broncodialators, hospital grade suction machines, etc. But puke happens and this time it happened in front of the entire assembled elementary school. 

The amazing fantastic glorious news (besides of course Ruby didn’t end up hospitalized) this week was…….SHE STARTED SWALLOWING PILLS!!!!! We saw an awesome video posted by the CF Foundation on Instagram of a little 15 month old girl using her applesauce pouch to take enzymes and decided to try it with Baby Ruby Forever and it worked! She found her own way to do it (no water, no sauce, just dry swallowing and sometimes chewing) but it was really easy for her and a huge awesome milestone in the life of a Cystic Fibrosis inflicted human! I tried to catch a really good pill swallowing session (she takes 5 pills every time she eats) and ended up with some pretty hilarious footage.

We are surviving this swirling world of existence with three CF children and one non CF child and I feel like every day this week really great things happened in our family. There were several moments this week (feeling nostalgic with my baby boy finishing preschool and dodging for now the hospitalization bullet) when I wanted to put the happenings into a snow globe so I could pick them up and watch them over and over again. Oh and good news, Frank ran such a flawless day with his clinic visit and perfect treatments with all three kids morning and afternoon he said he would consider switching places with me if I could find a job that made a million dollars a year so if anyone out there is hiring I’m worth it baby!  

Sunday, May 14, 2017

The Hell Raiser and the Butt Kisser A Memoir of a Medical Mother

The IV team had unknowingly IV'ed and taped his thumb sucking hand.

We were enraged and helpless caught up in the moments after the surgery of a g-tube placement of our son. What we were told by the surgeon in regards to when he could eat after the surgery (even popsicles or drinking ice water) had not been what she had then relayed to the nurses taking care of our son post op.

See don't I look like a nice sweet butt kissing
mother? But don't forget I have a pair of hell
raising pants and I'm not afraid to put them on.
He became desperate for something to drink. He was hungry and already sore and hurting from his new “site.” He was already experiencing so much trauma with the tubes, beeping machines, an IV in the hand he sucked his thumb with so it was all boarded up and taped to the nines. We just wanted to provide the relief that we could but we were trapped in uncharted post op instructions. The fact that the surgeon had told us one thing and then either that thing was a lie, or she had just neglected to relay the message was infuriating. We begged every nurse and doctor that came into the room to ask the surgeon, double check, please we know what she told us! But to no avail. Everyone was too afraid to bother the high and mighty surgeon for such a question. They each assured us that he wasn’t dehydrated because he was hooked to an IV. This gave little relief to his dry mouth, cracked lips, and cravings that come with not eating or drinking for 30 hours. All we could do was cry with him and not eat ourselves as the tiny little boy wrapped up in tubes and hospital blankets begged to eat and we had to say no. Until nurse H came on shift.
The whole family after the surgery (baby Ruby in my stomach
yet to be born and hiding behind her older sister in this picture).

Nurse H came in bright and early the next morning and we immediately informed her of our sons plight. She immediately informed us “don’t worry I’m the kind of nurse who isn’t afraid to ask questions, I get myself into trouble quite a bit for this very thing.” She tracked down the surgeon called her, paged her, finally getting a response. Yes of course he can eat, I told you he could last night at 8, the surgeon said.

To quote Mrs. White from Clue, “flames, flames on the side of my face.” The anger! The infuriating nonsense that had happened should never had happened. My son hurting already from his new stomach hole and crying himself to sleep from hunger and thirst pains on top of it should never had happened, there was no reason for it besides a negligent surgeon who had created such a fear inducing reputation for herself to stop nurses from asking follow up questions.

Then. Then was the moment that I knew I would need to be a bit of a hell raiser like my favorite Nurse H to prevent this sort of bologna from happening to my kids again. Side note this happened at a different hospital than the one we currently attend and we will as long as we can prevent it, never go back to the other one again.

The spell that was on me of being afraid to question charts and follow protocol was broken. I would no longer bend to the will of the chart. I would get my son a cup of ice water and soup and bread dang it! Get out of my way I’m going to the cafeteria, my son is hungry and I’m feeding him. I’m not waiting for room service. Watch out. Clear the elevator you’re not going to want to ride with the crazy mumbling mother, it will be uncomfortable.  

On the other hand I continue to try with all of my heart to be as grateful and kind to the medical staff that work with my children in the hospital. Or in other words I try my darndest to be a talented butt kisser. I think it is BEYOND important to start out doing everything I can as civilly and kind as possible with extra sugar, thank you, and a cherry on top for all your efforts sir and mam’ that work with my kids and their CF, but please don’t mess around we take their comfort and care very seriously.
I'll tell you what I'm a natural rule follower. Being obedient is OK with me, but situations like this and other enlightening experiences along our medical road have helped me to see that its important to be a butt kisser that raises a little hell when the occasion calls for it.

Tuesday, May 2, 2017

I Caught The Ball of Poop, And She Helped Me Clean It Up!

I really have to give a round of applause to our CF clinic team at Phoenix Children’s Hospital. Today when we came in the nurses were waiting for us in our room to do vitals. We always get two nurses (sometimes three) since they are doing vitals for three patients at once. Its pretty nuts in there as soon as we all step in so they have to be efficient and awesome and they always are.

Today’s visit I let Charles, our non CF kid, decide if he wanted to attend the appointment or not. Usually I make him go to school but he decided he would like to go today so we were all together.

Everyone was keeping their sanity pretty well. The clinic is really good at timing all the people we have to see so that we don’t have any long lags of time when we aren’t seeing and talking to someone (social worker, pulmonologist, nutritionist, respiratory therapist, nurse) which I appreciate. The appointments have always been long because each CF person requires being seen by 5 medical professionals so multiply that by three and we’ve got 15 different appointments so it’s no wonder if takes almost 4 hours.  

Ruby had the roughest time today pawing the door and prowling around the room desperate to leave like a hungry tiger waiting for the zoo keeper with the steak. She is ready to be toilet trained but I’m putting it off until school gets out so we don’t have as many car rides. She is obsessed already with taking her diaper off and sitting on the toilet. Demanding it! So it was no surprise today when the boys kept leaving (5 times for the bathroom, because that’s normal right? NO they wanted to play in there the little turkeys) to “use the bathroom” that she began screaming “POTTY ME, MY TURN,” and tugging on her diaper.

Well I fought her off while I was talking to our charming pulmonologist who is very skilled at what she does and is the most people-iest people person doctor I have ever met. She makes me feel totally normal to have the circus happening all around me with three CF kids and today was no exception.

Ruby had pooped and it smelled awful and we were all trapped in a 10x10 room. Maelee kept saying, “MOM RUBBY POOPED” (just you know in case I hadn’t smelled it yet NEWS flash sister my nose works great I smell the RANK!). So while I am attempting not to scream at Maelee and also to casually change a poopy diaper a few feet away from another adult I respect and admire and also keep eye contact and focus on important health discussions I all of a sudden am holding a large ball of poop in my hand.

When I had wrestled Ruby to lay down on the exam table to change her diaper and began to take off her skirt I did not know she had half way taken the diaper off already, sneaky like a ninja. When I pulled her skirt down the magic moment of the solid (thank heavens) ball of poop rolled perfectly into my hand and also the mess of the rest of “it” was smeared inside of her skirt, up her legs, and on the exam table. Really a magic moment for me catching Ruby’s poop ball, with another adult whom I admire and respect watching me two feet away.

What was our charming pulmonologists reaction? She gloved up (genius!) and came over with sanitizing wipes to help me clean up the mess. She also provided some handy biohazard bags (I love this lady! She just made it into my best friend dream team) and didn’t flinch with disgust for a second during the whole messy process.

I’m impressed, pleased, and grateful for her kindness and grace in such a crappy situation (wink).

To top it off she announced with grandeur that “this is a momentous occasion! All three of your kids are in the GREEN ZONE!” Which translates into all three kids are above the 50th percentile for BMI on the CF growth chart. This news is just what we were hoping for. Orson has NEVER EVER EVER been in the green zone since birth. Momentous occasion indeed! What was my reaction to her announcement? I started chanting, “GREEN ZONE, GREEN ZONE!” and our pulmonologist joined me (I've always loved starting a good chant). It has been an ounce by ounce miracle to see Orson go from the 13th percentile to the 67th percentile over the past two years.

What will I do with this memory of holding a poop ball in my hand in front of our incredible fantastic pulmonologist? Treasure it. Definitely move it to the top of my best awkward moments and then move it to the top again of the coolest most appreciated acts of kindness I’ve seen.

Yep I’d say our CF clinic team at PCH deserves a round of applause to deal with us knuckleheads for 3 hours and 40 minutes every three months. Did I mention our respiratory therapist left the room saying he needed to go “decompress?” Ha! I love the people who have decided to continue working for the CF community even though my personal CF community is a coo coo’s nest.  
Here is the hard working pulmonologist who helps our
kids survive, while also surviving our kids, and watching
me catch balls of poop. Sounds like a country song.

We obtained some new CF specific literature for kids today! Cute stuff!
Informative too!

This is what it looks like to have a 3 hour and 40 minute long
doctors appointment for 4 kids.

My favorite APP is Jiggity because I feel like puzzles
makes it less like screen time. See how I fooled myself there?

Here is our buddy Oreo who has taken his
g-tube and rocked it like a champion. Oh and he was
thrilled to STILL be the screen saver on all the
hospital computers! He is very happy about that, you know being famous and all!

Did I mention that I neglected to bring my baby shoes to the
hospital. Yep. Gross huh? Crazy morning and we got all the
"treatments" done so I can feel good about that. Luckily although
they do not sell children's shoes at the hospital gift shop they do sell
expensive puppy dog socks so at least her feet weren't bare
on the hospital floors.

Friday, April 28, 2017

When The Fairy Godmother Came To The Gas Station

Two years ago today we were feeling very loaded down and heavy as we pulled into the gas station. We were getting ready to drive to the hospital for Orson's g-tube surgery. He had been fasting since the night before and while it was fun at first to "get the day off from eating breakfast," he was realizing it only meant he was hungry. Trying to convince a three year old that being hungry is necessary was proving difficult.

I was 7 months pregnant with my 4th child and I was trying to hold it together as much as Orson was. Daddy the gas pumper was doing his best to be cheery too. We were each existing moment to moment assuring each other things were GREAT when really all of us were on the edge of breaking down. Lot of emotions, guilt at feeling like failures at feeding our kid properly, guilt that he would have a piece of plastic installed to fix our failure and it would scar him for earth, etc. Then what may as well have been a golden carriage pulled up on the other side of our gas pump.

Out stepped Orson’s fairy godmother disguised as one of our neighbors and friend. She gathered up her sparkling flowing gown and before she could even start singing she knew just what Orson would need that day. With a wave of her wand she assured us she would make this day better.

A couple of hours later after the surgery was over and the breakdowns had all happened there it was. A stuffed to the brim brown paper sack that had been delivered to our house from Orson’s Fairy Godmother and then brought to the hospital by Orson’s Fairy Grandmother (BeBe). Inside was a note explaining that the next couple of days was going to be rough but when things got tough for Orson he could pull something out of the bag to help distract him and cheer him up. Of course there was plenty to share with the older brother and sister who would be watching and hoping for a piece of that prize in the sack as well. Heavenly Father knew that we needed Orson’s Fairy Godmother at the gas station that morning! He sent her to help us just when we needed her magic.

This memory whopped me in the head (perhaps reverberations of the magic wand waived there for us years before) this morning as I put my car in park in front of the same gas pump two years later. We’ve learned so much about Orson’s g-tube in these past two years! His litter sister even thinks she has one and tries to squirt syringes into her stomach every night when we hook Orson up. He was about 32 pounds when he started and if all goes as planned next week when we go in to weigh in on the scales that count at the hospital he should be about 44 pounds. I’m pretty sure that fireworks and a marching band will begin to play if that’s the case. He has gone from the 13th percentile on the CF growth chart to (since we last checked on February 13th clinic visit) the 47th percentile (almost out of the DANGER zone, AKA below 50th percentile). I am definitely grateful he has his g-tube and that he has the long term benefits of growing properly now to benefit the health of his lungs long term.  

Sunday, April 23, 2017

A Great Trip That Ended With a Gunman, a Dripping Baby, and a Dozen Donuts

We had just gotten back from a trip. I helped my husband carry all of our luggage into the house for it to then explode along with the kids two feet from the front door. I got the baby straight upstairs for a bath.

While I’m running the water for the bath and can hear nothing else but water filling a bathtub there are gunshots outside. Frank hears the shots fired and his natural reaction is to walk outside. Picturing our roles reversed I would have double locked the doors and have been moving furniture in front of the door for good measure, but chalk it up to male vs. female emergency response triggers I guess. ANYWAY, so Frank is a walking back into the house and all of a sudden a barefoot man comes running at him yelling. Frank moves back quickly and inside the metal security screen door while the man is yelling at Frank to help him.

Gunman: “Help me, help me, they shot my friend and they are after me! Let me in so I can hide!”

Frank: “What? I can’t help you! You might have a gun!?!”

Gunman: “I do have a gun!” (Gunman then holds up his pistol to show Frank). “I’ll leave the gun outside!” (Gunman then tosses gun into the flowerpot by our front door). “Please, please, let me in. I think they shot my friend! I think my friend is dead!”

Frank: “OK but we are calling the police.”

Gunman: “Yes, yes, please call the police!”

So back upstairs I have not finished running the water yet but my oldest kid comes in and screams at me that “Dad just let a guy with a gun in our house Mom!” Which of course causes me to triple take my listening comprehension skills. My quick breath panic mode takes over as I carry the dripping baby to the top of the stairs to find my two sons huddled together noticeably shaking.

My ears are straining to hear what Frank and the definite voice of a stranger are saying to each other. Are they angry? Are they struggling? Should I lock the kids in my bedroom and use the landline to call the cops? Is my portable house phone charged? WHO AM I KIDDING ITS NEVER CHARGED! WHAT AM I GOING TO DO? WHERE DID I PUT MY CELL PHONE? IS IT DOWNSTAIRS WITH THE GUY WITH A GUN?  Then I have two seconds of super slow motion thinking and all my questions are answered, not by Frank but by a quiet calm to my heart and clear understanding.

No, Frank is not arguing with the stranger. No, we are not in danger. Frank is helping someone who needed help. We are safe. I knew. I was given a reassurance by the Comforter just as Frank was when he let that man in our house (we would soon discuss together later that night) that we were in no danger.

My next step was to make sure there wasn’t anything I needed to do to help Frank and then to get my exhausted children to bed. I went downstairs to get the babies bottle ready for her. I walked passed the pacing frantic man who said, “I’m really sorry about this mam.” I wasn’t sure what to say back so I asked him if he wanted water or a donut (of course we had donuts we just got back from a trip of course we picked up a dozen donuts on the way home from the airport – what kind of parents do you think we are? The kind who don’t feed their kids donuts – WRONG).

The stranger assured me he didn’t want either of those things right before Frank passed him the phone to begin talking to the police.

I went back upstairs to find all three of my big kids (the baby was in my arms still) huddled on the stairs with huge eyes and tears streaming. I guaranteed them that everything was going to be fine and that they needed to proceed getting ready for bed like normal. They then assured me that there was no way that they would take a shower without me standing in the bathroom with them while there was some nut downstairs with a gun by the front door. This seemed a fair enough request so I sat in the doorway of the bathroom feeding the baby her bottle while each of my three kids progressively took showers.

By the time they were done so was the phone call with the police. Also the stranger with a gun by the front door had finished his phone call on Frank’s phone and made several calls on his own phone then stood up and announced that he guessed “the coast is clear.” He began to walk away from our house and then turned back and said, “woops almost forgot this” and reached down into the flower pot to get his gun.

Frank then utilized all the locking apparatuses on our doors and joined us upstairs to get the kids all bedded and calmed down from the crazy turn of end-of-travel events.

As Frank and I went over and over the nights details with each other that night and since, we both keep coming back to the fact that we are so grateful for the Holy Ghost that helped both of us know what to do in such chaotic moments. “As we strive to stay on the path that leads to eternal life, the Holy Ghost can guide us in our decisions and protect us from physical and spiritual danger” – (link to quote and more explanation of the Holy Ghost here). I’m grateful for the Gift of the Holy Ghost.

We haven’t yet taken the advice of some friends which is for me to make a decorative sign to hang above the flower pot which reads, “drop firearms here,” but maybe we will eventually.  

Monday, April 17, 2017

I'd Recognize That Mustache Anywhere

Our first Great Strides Team MAMA Lou
walk 2008, the whole team!
Before our chapter of the Cystic Fibrosis Foundation changed the Cystic Fibrosis Great Strides walk to Sunday we were able to participate and did so in 2008 and 2009. It was our first experience besides visiting the CF clinic in the hospital in regards to guaranteed being around others with Cystic Fibrosis.

Baby Maelee with Frank Daddy before the
Great Strides walk in 2009
When your first diagnosed one of the bullet points in the “so your kid has CF” speech is a pretty serious run down on why your CF kid can’t EVER EVER EVER be around any other person with CF. It leaves you feeling sad and kind of like other CF people are similar to the boogie man. RUN AWAY and DON’T TURN BACK! Of course the precaution is 100% health related, but it feels really strange to be warned not be around people who are your people.

So for the two years we were able to walk in the Great Strides walk they let all the participants with CF know that to allow the precaution to stay in place, avoiding others with CF, that the CF Foundation would provide camouflage visors for people with CF to wear. This would allow the CF human beings to avoid each other with discretion. 

Me in 2009 pregnant with Charles around walk time
notice huge pregnant belly below in group shot is partially hidden
from view.
In 2008 and 2009 our CF child was a tiny kid so there was no way she would keep her visor on. The first year I think I tried to somehow attach the camo visor to her stroller but it was a fail. So I spent the whole time at both walks darting my eyes around for other camouflage visor wearers ready at any second to scoop up my daughter and go running far away so we wouldn’t get their boogie man germs (I definitely know other people with CF aren’t the boogie man so hopefully none of my CF friends who read this take offense, I’m just writing how it felt to me in early diagnosis - not the medical science behind bacterial colonization in the airways).

This is our 2009 Team MAMA Lou Great Strides crew.
Notice my baby Chuck still in my belly. Almost done

Anyway fast forward about 9 years to last weeks baseball game for my son Chuck, our only non CF kid. I’m watching his game with my baby Ruby in the grass behind the dugout. I look over and see a face of a woman I recognize as another CF mom that I know from social media only. We share similar friends and follow each other. Anyway I pull up her account really quick to make sure its her then I come up with my plan on how to introduce myself without her feeling like I did at the Great Strides walk about the other camo visor wearers.

I totally play it cool the whole first inning and then when my son is up to bat I casually stand up and cheer for him then I’m like, “Oh hi social media CF mom friend its me, Kamarah.” We exchange pleasantries and I sit there for the rest of the game thinking how small of a world it is, "after all" (so they say).

Then as I take a backward glance at the sweet couple sitting behind us in the grass behind the dugout I notice a familiar mustache. My cosmetologist heart never forgets a mustache. I remember that I met that mustache and his wife two years ago at our fundraising event. The couple had approached me and we had visited about how they had two children with CF but they had passed away. It was a special moment from two years ago that I hadn’t forgotten.

Being my father’s daughter I could NOT pass up an opportunity to tell someone I remembered who they were, so as we were packing up I spoke to the woman. As unweirdly as I could I asked her if she had two children with CF. She said she did and I told her I recognized her husbands mustache from an event two years agoI'd when we had met. She says “people always recognize his mustache.” In my humble opinion, it’s a spectacular mustache and I think it’s pretty cool that people know him by it. Again we exchanged pleasantries and left for home.

I have smiled about it all week. How three CF families end up on the same 10x10 square of grass watching a coach pitch baseball game on a random Thursday night when statistics say there are only 30,000 CF people in all of the USA’s 318 million is beyond me. But even though we aren’t supposed to be together it was nice to land there anyway even if it was just for the unspoken enjoyment of myself at the time. Cheers to chance encounters with the boogie man.

PS – For anyone who is concerned my CF baby and the other CF bigger girl did not get too close, although Ruby was abnormally friendly that night. She must have sensed their sisterhood, I’d like to think so anyway.

This is Ruby last week at the baseball game.

Monday, April 10, 2017

Heavenly Arranged Friendships (Even With Orange-ish Hair)

I wasn’t even born when my mom developed her close friendship to Kathy. But they grew up together as Mom’s with children of similar ages attending church in the same building. Working alongside each other while at the same time realizing they made each other laugh the hardest. It was a magical friendship made strong with enduring trials together and happy memories together too. But what made her really legendary in my eyes was their farewell story of sharing a neighborhood and a church building.

They were both expecting babies at the same time. My mom already had two girls and a boy so she assumed she would be carrying a boy (in the 80’s before common gender ultra sounds). Kathy also was pregnant and assumed she was carrying a boy. They decided that since Kathy was moving out of state that they would cement their friendship in naming their coming baby’s the same name. Cameron.

It turns out I was a girl so my Dad switched some spelling around and added several A’s and a K and WA-LA I had in their eyes the more feminine “Kamarah” and Kathy did name her son “Cameron.” So they still got their bond just a bit different than planned.

I remember Kathy’s visits to our house over the years with great anticipation. She may not have seen my Mom in a year or two but when they got together a natural and easy friendship was theirs waiting every time. We got to skip school to go to the zoo with “Aunt Kathy” and her kids. We went to movies on holidays together. I have a very clear memory of seeing the Home Alone movies 1 and 2 with Kathy and her family during Christmas time in theatres.

To see my Mom so happy with her made me happy and made me want to find my own Kathy someday.

Unbeknownst to me my Kathy knocked on my door one day while I was “big with child” about 10 years ago to the day. She invited me to a girl’s night and the rest is history filled with kid hang outs, double dates, pool days, cheap kid movies in the summer, grilled cheese sandwiches, bean crisps, and our most anticipated event over the years Black Friday shopping. Of course we have also shared the emotional and physical trials as life as well.

Heavenly Father knows just who we need in our lives and I’m so happy I found me a Kathy. Last week I was trying to decide whether or not to attend an out of state funeral for my Dad’s biological mother. I had only met her one time so I felt silly wanting to go, but I also knew that if my Dad were still alive I would be going with him to the funeral. The pull was strong. I knew it would be a challenge to leave in the middle of the week and a LOT crazy to fly in and out in one day. When I let my friend know what I was mulling over she told me that she had no plans for the day of the funeral in question and that she would love to go with me! My jaw dropped! I could not believe it! So we are off this week for a crazy same day in same day out flight to attend a funeral together.
The first pumpkin rolling challenge. Back when I had blondish hair with a lovely orange tint. I've always liked to keep it classy. Don't want anyone to mistake me for perfect you know.  
The second pumpkin rolling challenge with "my Kathy" my hair was not orange anymore so hooray!

These two women got me through so much! We aren't neighbors anymore but what we had when we had it was heavenly.

I have a strong group of fantastic friends who inspire, motivate, and cheer me up! I thank heaven for being given female friends who understand and accept me. I’m grateful for all the Kathy’s in my life.