4 Pounds of Awesome : The Smile Says It All

We went to the CF clinic today. Orson had a jaw dropping moment in the vitals room. He stood on the scale to see 40 pounds! This is huge! This is big! What a day! He has worked very hard and with a new combination of many changes since the April 19th visit of this year he has gained approximately 4 and 1/2 pounds in 62 days. For a boy who had had trouble keeping weight on for 2 years this is a massive hip hip hooray!

35 pounds 8 ounces to 40 pounds! He was very proud. If I could have been doing backflips through the halls of the hospital I would have! The nutritionist said she hasn't ever seen that big of a gain in that short of time for a kid with the same pattern Orson has had.

He went from the 6th percentile on the CF growth chart to the 61st percentile. So so so huge. What a blessing to his body and what an encouragement to keep up all the work that goes into gaining weight for this boy!

After we were done with our first round of congratulating and cheering for him he told me and my Mom that we should get on the scale and see if anyone would cheer for us. We assured him they wouldn't, but thanked him anyway for the idea. What a day! What a boy! What a needed tender mercy from Heavenly Father! 

Always Popcorn First, Then California, And Totally Ikea

As the last minutes of Father’s Day 2016 tick away I am walking through my Dad memories. I am blessed to have a father who loves me and I love him. He died unexpectedly in 2005, but I have found certain things that continue to tighten my bond with him even though he isn’t on earth with me now.

I eat a lot of popcorn. Dad did too. He taught me how to pop it on a crazy gadgety popcorn popper he had found someplace and we used it a lot. I would sit by him as we watched (earliest tv show memory) Magnum P.I., then Commish, and eventually CSI Las Vegas which he really like when it first came out. But it was something we did together a lot, eat popcorn (I always wanted to sit by him at the movies because he would have the popcorn bag). So now I continue to be consumed with eating popcorn.

Dad would take any opportunity to make a quick trip to California with us that he could. Eventually we all got to go on solo tag along business trips with him. Frequently he would fly out with his work to California then have my Mom drive us all up to him and after we played for a few days we would all drive home together. I am not sure if it was his personal only child experiences that drove him to get us to the beach and amusement parks as often as he did, or if it was just because he was super cool but if the window of opportunity opened even a little he would jump in and make these summer California trips happen for us. One of my Aunts told me after his funeral that hearing about his enthusiasm for family vacations inspired her to do it more often with her family. So just recently when we drove the road that Dad and Mom had driven us dozens of times as kids to California with our own kids the memories and the connections to my own experiences with my Dad and Mom came back to me. We stopped at the same place to eat that Dad enjoyed. We had a contest to see who could spot the ocean first. We sang along to our favorite songs (or at least I did anyway). It was so cool and it was so nostalgic and very special and I think Dad enjoyed our trip with us too. Since most recently my Mom was able to come with us, he surely was watching what a beautiful Grandma she is.

The last solo outing I had with my Dad right before he died was a trip to (at the time recently opened in our area) Ikea. He and I partnered up for a long walk through the home goods mega store. I remember he bought a handful of those grocery sack holders with the holes in them, because they were a good deal and he thought Mom would like them (and of course he could give a few away as well). My Dad was a marathon shopper. He could walk the stores with the best of them, shoppers I mean. Definitely did not fit the male stereotype of not liking to shop. We would spend hours at outlet malls growing up, so Ikea one of the ultimate shopping experiences I feel, was right up his alley. So at least once a year, often on or around my own birthday I take the time to walk through Ikea and never fail think of him and our outing.

One of my favorite conversations and memories happened the night before the morning my Dad died. I was making the long 30 mile drive home from school at night and called home to my parents land line to talk. Dad answered and told me, “sorry but Mom wasn’t home.” I told him that was fine I would like to talk to him. We had such a good talk. I probably couldn’t have scripted a better final conversation. At one point we were talking about our family and he said, “if you mess with one bean you mess with the whole burrito.” Which he said a lot but the fact that he tacked it on in that unplanned last conversation we had on earth was absolutely perfect.

A sappy post, but one day when I finally upload all of this into a book for my kids hopefully they will read it and know their Grandpa a little bit better and see pieces of him in me.

We Saved the Hole (first Adams Family Hit Song)

So as we processed the edge our seat experience with "saving the hole" in Orson's stomach so he would not have to have surgery again to replace his G-tube, lighting struck our brains with the lyrics to a song that would be the big grand finale finish to part one of the currently non-existent made for tv movie about Orson's life with a g-tube. We titled our future platinum hit song "We Saved the Hole."

LYRICS to "We Saved the Hole" by The Adams Family

We saved the hole

We don't have to have surgery

We saved the hole

We won't commit perjury

We saved the hole

There's no such word as "flerjury"

We saved the hole today

ba dum ba dum ba dum

WE SAVED THE HOLE TODAY!

The title of the song and main stay of the lyrics was inspired by a conversation one day with Orson's surgeon last year. She was educating Orson, Frank, and I about how to "save the hole." Meaning of course to keep the hole from closing if the g-tube ever came out unexpectedly. She repeated the phrase "save the hole," many MANY times in this educational appointment. By the time we left we had made jokes about making t-shirts with the slogan "save the hole" on them, but thought it may come across as lewd or just confusing unless you happened to be a g-tube family.

And yes, Frank and I very frequently discuss slogans for t-shirts because our secret dream is to open up a combo donut and screen printing/clever t-shirt selling shop that would be wildly successful due to our clever t-shirt designs and slogans in combination with fantastic hot donuts.
  
So while the t-shirt shop will contain this shirt someday, in the mean time this song was born and lives in our family now.

My Mind Said To Give Up

You know how something new comes into your life and you are on high alert about it at first and then it gets comfortable and it just blends into the background? Well a year after Orson’s button that is what has happened. Or atleast we were comfortable with it until this past Thursday morning.

The story begins at 1:20am on Thursday morning when I am in Orson’s room detaching him from his Joey pump that just finished pumping 2 cans of “milkshake” into him. I unlocked the extension piece that connects him to the pump, took him off to the bathroom, and then he swallowed his pills and went back to sleep.

Orson's Mickey Button deflated

Pick up the story at 5:40am when Orson wakes up earlier than usual to go to the bathroom again. I help him get there and back to his bed and then lay back in my own bed until 6:15 when Ruby wakes up. Orson and Charles have ambled downstairs and Orson is getting ready to set up for his gauntlet of treatments when he feels that something is not right. He screams to Charles that “MY BUTTON IS OUT, MY BUTTON IS OUT! GO GET MOM!” And then turns into a statue on the couch because he is afraid to move, sure that all kinds of terrible things will fall out if he moves around.

Shredded Button Balloon

Charles tells me what’s up and I go into complete emergency panic mode. If Orson’s g-tube (his button as we call it) is out for more than an hour the hole closes up enough to require surgery again to put it back in. So since we have no clue when it fell out I am freaking out. Cue the hand shakes and nausea.

First thing I get another button kit and go to try to put a new one back in. It doesn’t work. I try 5 more times while simultaneously rapid dialing Frank over and over. Because even though he is at work already I want him to talk me through it. The button is made of plasticy rubber and as I am following the tried and true steps to get it back in Orson’s gut it keeps bending in on itself, what I assume is a tell tale sign that the button fell out hours ago and the hole has closed long ago.

Orson cries because he knows that this means he will have to have surgery again. I start to pace. Charles who knows that surgery means Orson will be gone for a few days, cries out “I am going to miss him so much.” I get a hold of Frank who has at that point received my texts and seen my calls and is also distraught.  

I have tried so many times and Orson is so upset already from my jabbing him in the stomach in a partially closed wound that my mind said give up. “It’s too late, there is no chance. All is lost.” I continue pacing around the house. I am upset and thinking about last year’s surgery and dreading having to do it all again. When the thought enters my mind to call Orson’s surgeons office and get into the emergency on call provider I push it aside thinking again its too late and would be a waste of time. The thought comes again. This time I listen and call. I get through to a woman who says I will be called back by the on call provider very soon.

Orson is still laying on the couch afraid to move. I look at the button site and am shocked at how perfect and closed that it looks, my mind jumping to the day in who knows how many years when he will get to take out the button and keep it out and also knowing that today is not that day and what lies ahead.

I get a call on my phone from the on call provider. A woman who is calm and kind (and who has either a dog with a funny sounding howl, or a baby she is trying to juggle while she makes this call). I explain to her that I haven’t seen his button in him since 1:20am that morning and have no idea when it came out. By then Charles had found the button on his bedroom floor with the balloon completely blown out of the bottom. The woman on the phone asks if I have the old button, asks if it will hold water, asks if I have tried to put a new one in. Yes, no, yes. Then she asks if I have tried putting a Foley in. She said that the tip of it is stiffer than the tip of the button and I may be able to get it in to “save the hole,” that the button needs to get back into.  

I always carry the Foley with me as instructed by the surgeon. I run get it out of my bag and rip it open, pretty clueless as to how to use it since I never have.

Then the rest of the story can be compared to the scene in a movie when the least likely person in the back of the plane is pulled out of the back to do an emergency landing as directed by someone from a radio tower far away.

At the same moment that I am still sure that the hole is closed I am following her implicit instructions on speaker phone while the woman is both encouraging a sobbing Orson and directing me with calm clear directions. I am pushing with slow even pressure as the caller is telling me to and to my absolute amazement it gives way. Orson is screaming so I am still terrified I am hurting him and making the problem worse, but the woman on the phone from the surgeons office continues to encourage me and direct me. I finally get the Foley in far enough, fill the balloon with water and continue to completely doubt I have done it right. My new hero gives me steps to take to check to see if it is in correctly and as I follow them it appears to be just fine. She tells me how to tape him up and recommends leaving the Foley in for a day to stretch the site and then the regular (new from the package of course) Mickey Button should go back in the next day. All of it came to pass.

Once I got the Foley in, Orson had no more pain from the incident. The next morning the new button did fit. We are grateful that at this time Orson does not have to go back in for more surgery. We learned some new things, essential things, about the care of his button. But all things considered I learned most of all to listen to the prompting of the Spirit of God because on my own I had no hope of getting the button back in, but I was wrong and I received comfort, hope and direction through the Spirit of God.

Keeping the Tradition Alive....Eventually

There are some birthday traditions in our family that happened on accident and others of practical necessity. I made Maelee a twin sized quilt for her 3rd birthday to fit her bed better as opposed to the baby blankets and hand me down blankets she had been using. So from there on out each kid got a quilt that I made on their 3rd birthday. This tradition was established out of necessity.

Then following along this same time line I was pursuing one of my own ambitions and had finished writing and illustrating Maelee a small story book. I was delighted to find that Maelee really liked the book I had made for her. Charles also noticed this and at around age 3 he began asking me when I was going to make him a book. I told him when he was 4 he would get it on his birthday. So accidentally we established the tradition of the 4 year old in the family getting a hand made book for their birthday.

When Orson's turn came for his 4th birthday (and book) I was not even close to being done with his book. The idea for what it would be about was made clear to me one day last year when I was writing a blog post about the hymn "Master the Tempest is Raging." I love the beauty of the words of that hymn and the picture it paints of the endless cycle of storm and calm in life. Orson is a boy who has a physical storm that not many people understand, but amidst it all he faithfully "sweetly obeys" the will of Heavenly Father in regards to his life. Each day he is a snappy, happy, and sweet person to be around. So to me this was the perfect thing to make Orson's book about.

The best part for me in this book making birthday tradition is that it has allowed me the opportunity to visually create stories which I have always loved to do. I can see significant improvement in each of the books and am excited to find and make a style of illustrating that is my own. Plus there is no other gift I have ever given any of my kids that they have enjoyed more than these books they got on their 4th birthday (Orson practically his 5th, ah hem....). What else could a parent ask for more than for their kids to love the service given to them!

Hey Mom - Thanks For Teaching Me To Prayer Before We Travel

Dear Mom,

Thanks for teaching me to pray before traveling. I remember we always said a prayer together as a family before we left on a trip away from home. I remember sometimes we would remember to do it before we got into the car to leave, but often we would do it with all seat belts buckled and the motor running sitting in the driveway. Dad or you would say it from the front seat. Once or twice in the summer the car a/c would be running so high those of us in the backseat couldn’t hear very well so we may have shouted out an “AMEN” before the prayer was over but nevertheless, I distinctly remember those prayers being a comfort.  

Because you taught me this I do it now with my family. This weekend we had a camping trip. We borrowed a friends luggage rack for our tow hitch to travel with. Since we have never used this rack Frank took extreme care in packing it. He decided that he would wrap the items in one of our camping tarps before he strapped it all down for extra precaution. The kids bounced around between the car and the house while Frank methodically packed the items in the rack and then before we left we did what you taught me and we said family prayer.

At our first stop for the bathrooms with the kids after traversing through mountain roads with no cities or gas stations we found our big mistake and our miracle. The exhaust pipe from our car had torched the stuff in the luggage rack. Literally. Frank’s neatly wrapped package of tarp was now a mound of messy melded muddled plastic. We thought there was enough clearance that it wouldn’t be a problem. We were wrong.

The heat had burned first through the initial layer of tarp and second through the folded up tarp right behind it and further still to melt the wall of our cooler. Despite all of that melting the heat did not melt the tie down strap right in front of the exhaust pipe. It also did not catch the sleeping bags on fire which were right next to soccer ball sized hole melted into the luggage.

I mean we could have acted out P.T. Flea’s from Bug Lifes “Flaming Death” routine on the side of the mountain, but we did not. Clearly we were protected and watched over.

So thanks Mom for teaching me to pray before traveling and thanks for taking me fun places even when it wasn’t fun for you to prepare and carry out managing 8 people away from home and beds.

Lots of Love,

Kamarah  

That Time I Tried to Cut His Pants

We had not been dating very long but it was the first time my boyfriend was going to meet my parents. It was not a situation I had really been in ever, having an official boyfriend and being out of highschool that is (a grown up relationship, as much as it is when your 18 anyway)and I wanted it to go well. My parents had already left for my younger brothers football game and we were going to meet them there.

He knocked on the doorbell and I took my mental notes of his appearance scanning for anything my parents may notice. He didn’t dress like my brothers so I figured that would be a red flag right away. Of course I was very taken with him and wanted them to feel the same way. My mom is an exceptional laundress and always made sure our shirts were ironed and we looked put together. I remember several times being ready to leave for the night and stopping in to say goodbye to her and having her ask me to let her iron my shirt before I left. So when my boyfriend walked in with the hems of his jeans hanging off his pant legs 3 inches on both sides I assumed he did not know he was in such disarray or he would not of left home like that.

My natural instinct was to grab a pair of scissors and cut off the dangling hems, once again assuming he just hadn’t gotten to it himself yet. So I did. He had no clue why I was searching for scissors in the kitchen since he thought we were leaving right away but when I bent down to cut off the hanging off part of his jeans he was surprised and to my surprise very upset. He wanted to know why in the world I would go off and try to cut his pants, while I of course wanted to know why in the world he would walk around tripping over and having his pants being stepped on. But in the end of course they were his pants.

Now of course it seems very rude of me to – without even asking – presume cutting his clothes would be something he wanted. His reasoning was endearing. He said he had finally broken in this particular pair of jeans. He had worn them on his mission for our church in Australia, and also worn them many days working at his current job. He had worked hard to get the hem worn down enough to unravel and my cutting it off would be to ruin all of his hard work and take away the significance of a nicely broken in pair of jeans.

I learned a lot from that interaction between us. One thing of course was to communicate better myself and stand still longer mentally before jumping to fashion and appearance conclusions. Another thing I learned was how sentimental my boyfriend and future husband was.

All of these things I thought about last month when I was going through a long collected stack of old jeans and cutting them up for a project. The style of his dress has evolved with his age and he doesn’t wear his jeans quite so baggy anymore but his sentimentality remains a great part of his charm to me.

The "broken in" jeans

Of course he would want this cut off right?