Ring of Fire

Have you seen the his and her KY Jelly commercials?  You could say that they are nuanced at best.  Let's get down to the brass tacks on this one: Man and woman are in the bedroom looking frumpy, unhappy, and bored. Their faces are dotted with zit cream and their bodies are adorned in flannel.  The screen changes and they are swinging through the air as acrobats or swimming with alligators in skimpy outfits suddenly toned and bronzed.  Once again the screen changes and our frumpy, unhappy, and bored couple are now stunned, teased, and exhausted.  Their faces show pure astonishment at what has happened and their flannel nightclothes hang from the ceiling fan and bedside table.  You guessed it.  That his and hers KY Jelly changes lives!!!  The commercial claims that special sensations are what differentiates the product.

And so it was this commercial that hit me like a wall of fog as I sped down Lookout Mountain headed for Walgreen's.  Just an hour before, Emma Virginia and King were splashing in the bathtub together and I was acting as paparazzi.  I finally got an adorable picture of them that showed the pure delight in what we all know to be childhood bath time.  An instant later, King deftly pulled his feeding tube out of his stomach.  Just so you know, it is not meant to be pulled out.  Instead it should be removed by releasing the water in the latex balloon that holds it inside the abdominal wall...and then pulling it out...very carefully.  Let's be honest, you feel sick to your stomach.  That's ok.

This also happened to be the first time that it had been taken out since the surgery.  We were only 3 months in to the process and headed to have it changed in the next week.  Did we freak out? Yes.  Too much? Looking back, yes.  We had a new G-button (feeding tube) kit here at home, but had not even opened it.  I remembered that we needed lubricant to get the new button in place. Did we have that? No.  In the meantime, the surgical site had swollen almost completely shut.  I had also understood that the maximum amount of time that the surgical site could be open was two hours.  After the yelling, shaking, pacing, hyperventilating we had wasted 45 minutes.  The panicking was taken to new heights!

Naturally, since we do not have KY Jelly at our house I decided to text message my neighbors to see if I could borrow some.  I always learned that as long as it is less than one cup, you should be able to borrow it from a neighbor.  What was I thinking?  To make things better worse it was a Sunday morning.  Since my neighbors were already at church they received these text messages there.  The cherry on top, right?  I didn't hear back from them immediately, and decided I needed to find some product of my own.  Hence the drive to Walgreen's.

As I raced into Walgreen's headed for that section I spied a helpless cashier.  This is not a product on the weekly grocery list, so I begged her to help me find the original KY Jelly.  I was terrified that I would take King the cayenne pepper tingling sort that "changes lives."  Can you imagine???  All I could think of was his poor little swollen surgical site and the his and hers commercial.  The cashier was really confused as to why I was so desperate for KY Jelly on a Sunday morning (mind you it was 10:00 AM-the church bells were tolling all over town) and why I was intent on it being the original one.  Of course I wound up telling her the whole button-yanking tale which sent her into a fit of prayer.    I have tremendous appreciation for prayer, but King and his button were waiting on me and Mr. KY back at home.  Eventually, I walked out of Walgreen's with the desired product.  No tingling sensations for my little Prince.

Once I got home the opening was even more swollen.  We had a very hard time getting the button in, but finally my husband got it to go through the opening.  What a relief?!?  Wait?  The thing has to be changed once every three months.  For the next month, I pretended that I would not have to change the button.  The two months after that I had nightmares about having to change the button.  Finally, I decided to bite the bullet and go for it!  I wanted to do it while my husband was at work to be sure that I could do it alone.  My mother was in town and silently stood by while I demanded that she NOT help me.  In fact, that sentence summarizes a lot of what my poor Mama has to put up with...she's a Saint...no doubt about it.

After four suckers to keep King occupied, a migraine for me, and enough hyperventilation to round it out, the button went in.  I felt like I was back in Ecuador jumping off a 30 foot cliff.  Hey, at least I didn't lose my bathing suit top this time.  King has only done this once, and we have changed his button as scheduled several times by now.  Each time I am a little less nervous and my cliff gets a little closer to the ground.

Jiggety Jig

I am so glad to be home.

As I travelled into Chattanooga this evening everything looked more beautiful than ever before.  Nickajack Lake glistened like a sapphire, Mocassin Bend's curves summoned a closer look and the unlit letter in the Chattanooga Choo Choo sign was artful.  When I pulled into my driveway I was thankful that the rain caused all the weeds to pop out in my lawn of clover.

Today started out harder than it ended.  Anticipation has a funny way of doing that to me.  The fight and the build up are always worse than the actual scenario.  When will I learn this lesson and let go?  Please Lord, let it happen sooner than later.

Appointment #1-ENT

King had a Nasal Endoscopy to see if his surgery needed correcting.  Everything was perfect!  However, he does have another bad sinus infection or perhaps the same one.  The ENT feels that E Coli is growing persistently in the sinus cavity as it was before.  The Augmentin should have taken care of it, but did not.  

Appointment #2-General Surgeon

King had the area around his G Button checked because it is red, weepy and swollen.  At first glance, they knew that there was granulation tissue.  This happens when the body tries to heal in a place that it can not (there is a tube in the way of the hole closing).  This causes a green discharge, raw skin and bleeding.  The nurse used silver nitrate to cauterize the unwanted tissue.  This was very painful for sweet King, but will be incredibly helpful in the long run.  I was not prepared for how badly it would hurt him.

Appointment #3-CF Care Center (Pediatric Pulmonologists, Infant Dietitian)

Guess What????  King is at the 49th percentile for weight to length!!!!!  I had myself (and everyone else---sorry about that, y'all) convinced that King was failing to gain weight on the curve.  He is doing an awesome job especially since he has been so sick!  Everyone was very proud at the Care Center!

Remember the yucky E Coli?  The pulmonologist feels that we can try one more oral antibiotic until Tuesday.  If by Tuesday King is not showing marked improvement we will need to check him into the hospital for a 2 week course of IV antibiotic.  He started Bactrim tonight and hopefully it is going to make all of the difference in the world!

I hope we get to stay home next week with our lawn of clover.  

Hi Ho Hi Ho...off we go.

I have a date today.  It may even end with a kiss goodnight.


I am escorting King to several appointments.  He will be seen by the ENT, the CF care center and the surgeon.  It is quite the line up.  Let me just tell you-I should have lifted weights for this.

• King requires an appointment with the ENT as a follow up for his last surgery.  The ENT will do a nasal endoscopy to assess the surgical site.  This will allow him to see inside the sinuses.  Since King has another sinus infection it is quite fortuitous that we have this appointment.  There has been mention of a stint being placed to force the sinuses open.  I wonder if we might discuss that further today?  
• King also has an appointment at the CF care center.  This is his monthly appointment where weight to length will be charted, a throat culture will be done to see if he is a carrier of any serious bacteria that could damage his lungs and his medications and therapies will be reviewed.  
• Additionally, King will need to be seen by the surgeon's office.  His G-tube (feeding tube button) has become red, irritated and weepy.  ***Just in case a parent is reading this that is scared of feeding tubes, I want you to know that this should not be a big issue.  I really don't want to scare you.  The feeding tube is the easiest thing ever...I mean that.***

I would be lying if I told you that I am not nervous.  I am.  I am nervous for King and nervous for me.  It's not that I think something bad is going to happen.  I just hope in the most raw way that we don't get any bad news.  What is bad news anyway?  We can handle anything, right?  Of course, this is not the first time that King has been to the ENT, the surgeon and the CF care center.  Old hat, right?

I hope he doesn't require another sinus surgery, I hope he doesn't culture any damaging bacteria and I hope that everything is OK with his G-tube.

Where is the fun in all this?  We get to see our friends, the doctors and nurses that understand us better than most anyone else.  We get to go on an adventure together.  We'll make memories.  The memories may or may not include a bloody nose for one or both of us!

Wish us luck as we shove off together.  "I've got your love and you know you got mine 
So were gonna make it, I know we will " Thats right, King, my most wonderfully made boy.

In the case that this is all too serious for you, please find humor at my expense.  It is the very least I can do for you, 

my friend:

At 10:30 AM CST I will be walking through a hospital wiping everything down with Lysol.  I may even wipe small children who appear contagious--because that is rational.  I usually get yelled at scorned by one nurse in particular for wiping the entire patient room with Lysol.  Yes, that includes the floor.  Am I the only one that has considered how dirty shoes are?  Hello?

Wee wee wee all the way home.

I love pig. I love pork. I love sausage. I love the way they make the sausage look like a pig in the butcher's case. I love to play with piglets. I love my cookbooks that are solely about pork.  I love my McCarty pig.  I love pink and white gingham because it reminds me of pigs.

You get it. I love pig.  It is odd that I love the pig both frolicking and for consumption.  You don't have to tell me-I am dealing with that dichotomy.

I also love to cook.  I also love the Junior League.  I am fortunate that this is not a dichotomy because clearly I have enough issues to address.  Perhaps that is why I became involved in the great era of the JLC coobook, Seasoned To Taste: Savoring the Scenic City. I literally learned how to publish a cookbook. Isn't that amazing?  It was incredibly enriching.  I hope that Emma Virginia can experience something like it one day.  Not only did I have such an opportunity to learn many new things, but I got to do it with the most fabulous group of girls ever.  It would be impossible for me to tell you how many hours we met about the cookbook, how many events we turned into cookbook events, how many times I served family and friends cookbook recipes for testing, or how many blocks of cream cheese I purchased.  Recently, I told this same group of girls that I still can not go to the store without buying at least two blocks of cream cheese.  Cream cheese is the glue that holds us cookbook girls together.  It's a good thing that cream cheese is sticky because we were all chiefs in the process, and it would be a fib to say that it was all cookies and cream.  There were some weeks that we spent every day together editing, naming, researching and pairing recipes.  Did you get a push present when you had your child?  Well, I got a push present when the cookbook was published...I did carry it for well over 9 months...that counts, right?

My job on the cookbook committee focused on the recipe portion of the book.  We had a committee that culled recipes upon intake and tested each one furiously.  We received over 1,000 recipes and managed the tasting and testing throughout the JLC.  God bless my husband-he was forced to eat five course meals many a night...I could never promise that the meal would be a hit either.  We just had to get those recipes tested!!!  We even had tester holidays where the menu was planned around recipes that had to be tested by the deadline.  The taster ratings slips practically became a part of the silverware at our dining table. Looking back it is all quite humorous.

It would only make sense that when the cookbook testing commenced I would still be pretty focused on food.  Around this time Emma Virginia decided that she really loved ham-all.the.time.  Breakfast, lunch, snack and dinner.  I started purchasing a ham a week and testing myself on what all I could do with it.  My neurosis came out in full force as I began centering all meals around our guest of the week.

Once I went to a grocery store to visit the butcher.  I asked him for a ham and proceeded to tell him all that I would do with said ham. I would make ham and apple sandwiches,  ham and lentil soup, red beans and rice, split pea soup, ham quiche, ham broth, etc.  He was neither impressed nor amused which really hurt my feelings. I felt certain that a butcher, a man that knows his meat, would be impressed that I would use all parts of the ham! Instead he felt badly for me and offered to find me another low cost meal option.  The butcher completely misunderstood!  I think he felt that I was telling him that all our family could afford was a ham a week.  No, no, no Mr. Butcher.  He wouldn't hear it.  He could give me a good price on a certain cut of beef and perhaps I could "vary" my menu.

I told him to keep his beef-I'm no ham traitor.

Story Girl

It is true that I love to tell stories.  As a young girl from first through fifth grade I told stories competitively.  I happened to be pretty good at it too!  It was fun and I loved excelling...you could say that it caught on.  Those close enough to me know that I still love to tell a good story.

Those first years I competed in UIL storytelling which was a program created through the University of Texas.  Our family, destined to follow the flat lands and agriculture, relocated to Texas from the Mississippi Delta.  UIL was where I found my niche.  The program called for children to listen to a story told once and recreate it in their words and actions.  There were rules about how much one could move, how far off the storyline one could go, and so on.  I absolutely adored creating my stories in front of the judges.  The bigger they smiled, the harder they laughed, the more shocked they seemed, the greater the passion for storytelling grew.  Compare me to an auctioneer reading the audience if it helps with the visual.

With age, I graduated to UIL Oral Reading.  This competition was based on one's ability to present published poetry over a 6 minute period of time.  I would memorize the selection and reference the requisite binder held in one hand while gesturing with the other hand.  The poem that took me farther than any other was Roald Dahl's "The Anteater."  We had to change the main character in the poem to a girl named Pearl as opposed to a boy named Roy.  Hence one of my many nicknames, "my girl pearl."

Now, I imagine that you may think "what a funny thing for a child to do."  I also think it sounds odd and somewhat somber for a child's activity.  Storytelling was to me what T-ball was to most of the boys around.  I was coached, I practiced endlessly, I aimed to win, I earned my confidence, I advanced through levels and on we go.  Once I even twisted my ankle on the way to a competition causing it to swell to the size of a Texas grapefruit.  I still went to the competition and won.  I am guessing that this has something to do with my lack of sportiness and the fact that I still can not ride a bike...not the twisted ankle, the focus on mental gymnastics.  Note to you: when you say to me, "It's just like riding a bike"-that is a real downer.

My single worst memory in all of those years was of a time that a judge FELL ASLEEP as I recited my poem.  There has never been an angrier more disappointed little tyrant in all of the land!  How dare he.  I tried to wake him up by raising my voice, but to no avail he snored.  The best part of competing was that I got to go shopping for snappy outfits with Mama.  I still remember my favorite one: a brown suit jacket (pint-sized) with a polka dotted pleated skirt.  I do wonder how my parents managed to handle my inflated little personality?  Today I get to manage my own little handful, Emma Virginia.  From what I hear, she already exceeds my stamina as a fourth grader.  Condolences or congratulations?  You tell me!

My family eventually came back to the Delta, to our family, and to a place that is rich in stories.  Stories of the Delta are endless and far flung which is what makes it a most compelling place to live and love.  There are two published Delta storytellers that I would suggest you get to know: Gayden Metcalfe and Julia Reed.   Julia Reed pays homage to the Delta through her books and the many publications to which she contributes.  Gayden Metcalfe, who happens to be the Mother of one of my precious friends, hits the Delta trifecta on the head with The Pastel Trilogy which she wrote along with Charlotte Hayes. Visit http://www.thepasteltrilogy.com to get just a taste before purchasing copies of your own.  These women write beautifully no matter the topic.  Delta storytelling doesn't stop with literature, it runs far deeper through food, celebration, politics, family, religion, agriculture, and music.  Much like Faith, I can't seem to put reason to why the Delta is such a special place.  Since you can't depend on me, I give you Eudora Welty as she writes in "Delta Wedding."  "In the Delta, most of the world seemed sky.  The clouds were large-larger than horses or houses...The land was perfectly flat and level but it shimmered like the wing of a lighted dragonfly.  It seemed strummed, as though it were an instrument and something had touched it."  I can't imagine a more perfectly peaceful place.

Now I live in Tennessee where I find another culture, although different than my beloved Delta and the people that give it lifeblood, one that is rich in it's own right. I still love storytelling, but it has taken on a different light.  I tell stories as a fundraiser, as a mother, and as a friend.  I feel lucky to experience my friends and loved ones through the eyes of a storyteller.  I hope that it allows me to absorb another dimension in life.  To find the emotion, the humor, and the love in each day could only be a blessing.

I do declare.

Since when did it become offensive to make a declaration?  I think somewhere along the way society inferred that a declaration is too strong of a communication.  Well, I do declare, that they were wrong.  

Speaking of declarations, "We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness." Yes, the Declaration of Independence means so much to this great country.  However, this particular part of it means so much more when applied to our own governing bodies.  Should we not live out our days seeking to be fulfilled in the simplest means?  

When referring to the Missouri Compromise, Thomas Jefferson stated, "But as it is, we have the wolf by the ear, and we can neither hold him, nor safely let him go.  Justice is in one scale, and self-preservation in the other."  He was discussing, in my thoughts, a most hideous and sad time in our history.  I will never really know of course, but I feel that our friend, Mr. Jefferson, would have been a thorn in my side.  In any case, I do absolutely adore the comment as an application to cognitive process.  I feel certain that is not how Mr. Jefferson meant it.  Certainly there are cases where we have our shrimp and grits too; but, the fact stands that is not always the case.  

This comment also strikes me as an internal fight with Faith.  So often it is frightening to let go and realize that the decision does not lie within us.  A dear friend asked me recently (as so many have) how I deal on a daily basis with King's Cystic Fibrosis.  This time the question was posed differently-they waited for the answer in the authentic form.  I think many times people ask the question with a prescribed answer attached.  Because I knew that the wish was for an honest answer I was able to declare what I know to be true.  Faith.  To be so extraordinary and powerful, Faith is impossible to explain by reason.  It is a personal feeling, a burning inside, an emotion so deep, and a stronghold on the present.  I declare that Faith is what allows me to carry out the days.

Life, Liberty and the pursuit of Happiness means something different to each of us. For instance, King vomits every morning (I feel due to sinus disease...another story for another day).  I really wish that he would stop vomiting and we could go back to "just" having CF.  Conversely, if you have a child with severe reflux and then they are diagnosed with CF, you would wish you could go back to "just" having severe reflux.  If you ruined your best pair of heels in The Grove, you would wish you had just worn the less expensive pair.  If you spilled spaghetti sauce down the front of your shirt, you would wish you had been more careful.  The hungry man that watched you do it would just wish he had the first bite.  The Declaration of Independence was an amazing thing for those that were allowed the freedom to "hold these truths to be self-evident." However,  I seriously doubt that Jefferson's slaves were tickled pink to dissolve political ties with Great Britain.  Life is all relative, but that does not mean that we can afford to ignore the lives of fellow man.

If you're in the mood for a curveball (we might as well tie baseball into this, right?) let me just tell you....As much as Mr. Jefferson and I could have debated intensely on ethics, Little Milton (the Blues singer) would have been the friend to sing me right over the rainbow.  I worked feverishly this morning to remember the lyrics to We're Gonna Make it.  I've had parts of it in my head for days now! The pleasure was all mine to discover: 

We may not have a cent to pay the rent 

But were gonna make it, I know we will 
We may have to eat beans every day 
But were gonna make it, I know we will 
And if a job is hard to find 
And we have to stand in the welfare line 
I've got your love and you know you got mine 

So were gonna make it, I know we will

I think Little Milton must have been a man that didn't fear the meaning of life.  Grits Ain't Groceries is another of my favorite songs that I love to sing to Emma Virginia:

Because you know I love you baby
Oh you know I love you baby yeah
Now if I don't love you baby I tell you
Grits ain't grocery,
Eggs ain't poultry,
And Mona Lisa was a man

If we can take a clue from Little Milton, life is simple and declarations should come easy!

As we navigate the cognitive process and realize our potential for fulfillment, might we also take the time to live up to the simplest of our liberties.

Sell or be Sold

(I wrote this post months and months ago...it just never got posted!)

I love the Ricola commercial.  I don't know if it is the Ricola song or the background, but it makes me want to be a part of the Ricola movement.  A movement? Yes, a movement...for me at least.

I come from a Mother who happens to be very persuasive.  She vehemently believes in Diet Sierra Mist, exercise for therapy, gargling with salt water, well-behaved dogs, sorting clothes before washing, her microplane zester, her lemon juicer, and the list goes on.  Here is the kicker-the things that she markets must be proven to be effective.  She sort of has her own FDA system.  She can tell you all about her method or product that she would live and die by.  I love this about her because she also believes in me.  Note to you: don't mess with me-she will take you out-BIGtime.

"Where is Ginger going with this?"  I put that in quotes because I know you just asked yourself that question.  I love to sell and I love to be sold...just like Mama!   However, I am hard to persuade if you don't have a good case.  For as long as I can remember I have wanted to like Ricola.  I have been trying to sell myself on Ricola for a long time.  My tastebuds have been in direct opposition of this sales pitch which is very annoying.

Guess what?  A few months back my tastebuds gave in and we now LOVE Ricola!!!  The smart folks over at Ricola created some delicious combinations involving honey.  I can now proudly purchase bags of Ricola drops and not feel guilty for wasting $2.94 on a pretty bag.  Yes, I used to purchase the Ricola cough drops because I found the bag irresistible.

Monday around 2:30 my throat revolted against any calm or pleasant feeling I had in my body.  It felt like I was healing from a tonsil piercing.  My mother was in town and suggested that I (forced me to)-you guessed it-gargle with salt water.  I did.  That didn't help.  I painted/sprayed my throat with Chloraseptic which was NO treat for the ole palate.  That didn't help.  After writhing in pain all the way down Lookout Mountain my Mother suggested that I call the doctor and beg for an appointment.  This is another thing I learned from her.  If someone tells you no it means you didn't explain yourself appropriately.  We give lots of detail in situations like this.  After visiting the doctor I went to the pharmacy to pick up some cough drops.

As I approached MY Ricola cough drops I noticed a bewildered man pacing in front of the cough drops.  Since I know the feeling of utter confusion when faced with this important decision, I asked if I could be of assistance. The man told me that he was in town visiting and that his child had fallen ill.  They needed cough drops.  I would also like to say that he was oddly confused by the concept of a cough drop.  Yet another note, we were dealing with an intense language barrier.  I was immediately torn between my old standby, Luden's, and my new love, Ricola.  I decided that I needed to tell this perplexed stranger about my study on cough drops.  I asked the age of his child and whether he or she could be trusted with a hard cough drop.  He said yes.  I am proud to report that he left with not one but two bags of Ricola after hearing the pros and cons on the whole lot of cough drops.  I would still say that cherry Luden's are a wonderful treat for any tot...or adult for that matter.

I am my mother's daughter.

To thrive or not to thrive.

Thrive: 1. To grow vigorously; flourish

This has been the question at our house for quite some time.  Is King thriving?  Is King labeled "failure to thrive"?  What does that mean?  For King, failure to thrive meant that he was no longer on the growth chart for weight to length. I have a tendency to get swept away in the details of things like this.  I like to argue the facts and make my case.  The day that we went to Vanderbilt for our last weigh in, I had my case in hand and I was ready to argue.  King's Godmother came with us that day.  I prepared her for what I knew would take place.  It turned out to be one of the most emotional days of King's diagnosis.  Once I allowed myself to listen to what the dietitian and doctor were telling us I couldn't argue any more.  I began to feel selfish that I would put my thoughts and opinions ahead of my son's best interests.  I wake up every day praying that King and Emma Virginia will be afforded the very best in everything.  How could I deny King this opportunity to grow?

I think that allowing the feeding tube was a difficult decision because we had to admit that King was not thriving.  He was not growing vigorously nor was he growing.  We also had to admit the severe deficit that his pancreas had presented and would continue to present.  When we went for the requisite 9 month check up our pediatrician, Dr. Meredith, told Mama and I that King was sustaining the weight and length from 3 months prior; he said that King was essentially in his 6 month body.  At home I was watching King crawl and begin to pull up, babble, coo, and laugh.  I had already made the decision to allow the feeding tube when Dr. Meredith told us this stat from King's chart.  I knew that I wanted my precious son's body to withstand the vigor which he so yearned to display.

Everything worked in harmony.  The surgeons (we had several other surgeries in addition to the gastrostomy) worked together to schedule the surgeries back to back, the pulmonology clinic answered my zillion questions with certainty and compassion, Alex and I were on the same page, and King did not have a serious respiratory infection going into surgery.

Since I have a hard time letting sleeping dogs lie (no, I really do-I would much rather gaze into their eyes and squeeze them) I began to ask questions of anyone with decent hearing and the decency to listen.  I was able to find several innocent souls that I could pepper with feeding tube questions.  God bless the nurse that answered the phone at our local Gastroenterologist's office.  About 20 minutes in she finally referred me to a website that "would be increeeediblyyy helpful."  I see where she was going with that, but that website scared the hell out of me...there was a lot of Mad Mommy syndrome happening in that neck of the woods. After reading nearly 50 comments on the site I pictured the feeding tube to be a geyser overflowing with bile, popping out of it's designated space every other day, and creating a ring of fire on sweet King's belly.  King's pulminologist, Dr. Brown, was tasked with undoing the horror of that "increeeediblyyy helpful" website.  If Dr. Brown made a strong enough case I would probably eat Vienna Sausage. (I feel sick at the thought of the can.)  She really is "increeeediblyyy helpful"!

Guess what?  It wasn't so damn bad!  I sat in the surgical waiting room praying and cursing myself all at once to accept what was happening.  I don't know why I had such a hard time accepting the gastrostomy at first.  I like to be positive and own change.  That is how it works best for me. I prayed to Mary that she would help me to love this new part of my son's body, I prayed that I wouldn't wince when I saw his red flesh, I prayed that I wouldn't be squeamish and he would be able to tell, I prayed that I, of all people, would be able to teach him to be proud of all parts of his body, I prayed that I would be able to parent him as he got used to this "new body" and the new opening from which he would be fed at night, and I prayed that I would forgive myself for having to pray so hard.  Just before they called us back for the post-op consult I felt myself ease into this new role.  My prayers worked.  It was amazing.  I still had a hard time looking at the surgical sight at first; I was scared.  It took me a few days to get into the swing of things. In the meantime, Alex was a champion!  I also talked to another mother who I think the world of, Lauren Casevechia.  She promised me that it would get easier and that I would be an old pro in no time.  You were right, Lauren.  You'll never know how good it was to hear your voice on the phone that day:)  My dear friend, Meryl, allowed me to go on endlessly as I presented my spiel on feeding tubes and the other maladys which we were working to conquer. PS she is a nurse who doesn't need an extravagant explanation when it comes to feeding tubes or anything else.  Gee, Meryl, it sure helped to put it all in words:)

I can now honestly report that King's feeding tube, Walter the Schwillderbeast, and I are pals.  He and King get along quite well with only mild GI issues.  Emma Virginia has gotten to know Walter and approaches him with only slight trepidation which is quite the deal.  Emma Virginia fears nothing.  She takes the bull by the horns...no, literally, I feel sure that one day we will find her shaking a bull by his horns.

Ok!  I am going to stop "milking" the feeding tube story.  Gotta love a pun.

Oh, and also, if you are considering a feeding tube for your child please note that our experience has been NOTHING like what I read on that unhappy website.  I do understand that some of these issues can present at a later date and each case is different.  Currently, there is no volcanic field upon my child's stomach, there is no rebel feeding tube, and the ring of fire is nowhere to be seen.  I'll be sure to keep you updated if and when issues worth discussing arise.

Walter the Schwillderbeast

Who is Walter the Schwillderbeast?  I love nicknames.  I think they humanize anything-many times humans, but sometimes inanimate objects.  So, who is Walter?

Walter is King's feeding tube.  You may know enough to know that Walter was born to us on September 20 at Vanderbilt.  Alex and I talked before we went for the birth of our newest member and decided that we needed a better name than "feeding tube."  Not only does "feeding tube" sound lame and uncomfortable, but who wants to say that instead of Walter the Schwillderbeast?  Not I.

I imagined that Walter the Schwillderbeast would take up hours upon hours of time, scary oozy time.  Trust me, it is not like I am dancing through fields of lavender over here.  The days are pretty busy.  Surprsingly, Walter and I don't see a lot of one another.  We get a decent visit in the morning and at night.  Once I took him to the pediatrician's office for a look-see.  I saw way more than I was ready to see.  Dr. Meredith, our pediatrican, took Walter for a spin on the dance floor and I saw all beneath, around, the side...you get my point.  It was kind of like ripping a bandaid off.  I never would have put Walter to that kind of test.  He was up for the challenge though, and so am I.  King has gained a pound since Walter joined the fam.  I think we'll keep him. 

Don't you think that little King will rock the playground with Walter the Schwillderbeast?  I imagine that his friends will welcome Walter with open arms.  If not, they'll get the one two punch from me.  Who wants to get beaten up by a mom?

Thoughts upon thoughts

My very dear friend and Emma Virginia's Godmama, Win Daniels, told me to write a blog.  Here is the problem: I have my suspicions about blogs.  Does one say that they write a blog or post a blog or OHMYGOSH this is so confusing!!!  It is not that I don't enjoy a good blog read (?).  I just don't know (definition of know: to apprehend clearly and with certainty) about them.  In fact, in no way am I clear or certain about the details of a blog.  However, I am intrigued.

There is one blog in particular that can pull me out of any fog any day at any time.  A funny-as-hell girl we went to Ole Miss with has a blog that leaves me guffawing and snorting maniacally every time I read it!  Most ofen on the racy side and always candid, I relish a new post from her. Then there are the blogs written by superbly negative mothers.  Those scare the H-E-doubleL outta me.  I know that these women are being honest (maybe?), but they don't even pepper their stories with happy.  I see the blogosphere (blog lingo, I think) as a community.  It even comes with cliques.  People that have health issue blogs tend to read others like them, crafty bloggers like other crafty blogs, mad mommies like other mad mommy blogs, and so on.

Here is the issue: I am having a major identity crisis.  I love so many aspects of  life (yes, mine) that I can't chose just one!  Since I have convinced myself that you, dear reader, may have an interest in one or more aspects of my life, you get to hear it all.  I am glad that some of you will join me through happy, sad, scary, thrilling, interesting, inspirational times.  I plan to tell you about the funny, sad, scary, thrilling, smart, tiring, interesting things that happen or have happened in my life as well as my role as mommy, wife, daughter, friend, innovator, volunteer, learner, faux medical professional, exercise procrastinator, and so on. 

A few of my favorite things...

This blog has been created for several reasons...one of them is to document the hilarious things my children say and do.  Don't we all need a little pick me up?:)

Belection (pronounced like collection)-things Emma Virginia finds anywhere and I do mean anywhere. these are proudly displayed on her dresser, my dining room table, the floor, my car, etc.
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Brand New Muffins-you may think that I have given her an OLD muffin in the past. that is not it. she literally thinks that is what a BRAN muffin is...A BRAND NEW muffin. Her Nonie was the first to capture this gem of the Emma Virginia language.

Cream of Week-meaning Cream of Wheat. Are you noticing a trend?  Nonie and Emma Virginia have breakfast together daily. Nonie loves "Cream of Week" and "Brand New Muffins"

Story #1-Kenneth King in the NICU and Emma Virginia visiting the playground at TC Thompson Children's Hospital

"Nonie, can I go play down there [on the playground for children being treated at the hospital]? No, Emma Virginia, I think that is for children that are in the hospital.  Well, my brother has a tube." Apparently Emma Virginia felt that she would use Kenneth King's tube to her advantage;)

Story #2-Emma Virginia as Ambassador to the Imaginary

Emma Virginia enjoys the fruits of her imagination...to an overwhelming degree.  Currently she is married to Ciao and is stepmother to his two children, Caine and Mary Anne.  They have a large community of ninjas.  I think Ciao must work a night job because he is not home most evenings.  Emma Virginia has two snakes, Sally and Boy.  If you're nice, she'll let you pet them.

And into 2012...

This email was written on December 19, 2011.  God was with me as I wrote this email and when I received the phone call from our Pediatrician, Gary Meredith. Of course I was shocked to hear that we had a hurdle to overcome, but with the love and support of friends I knew that I could summon the courage.  If you know our story then you know the outcome, but this is how it all started....

"Hi Friends,

Thank you for your prayers while Kenneth King was in the NICU.  They worked!  He is home with us and we are enjoying his warmth.

Today, when I was on the phone with Allie, our Pediatrician called to let me know that the Cystic Fibrosis test came back posititve.  What a shock!  We need your prayers again...they have proven to be such a support!  Many times this test proves to be a false positive.  We are hoping to have Kenneth King retested tomorrow at Children's.  The next test will be a sweat test which is more definitive. Kenneth King will have to produce enough sweat to be tested.  Alex and I are unaware of CF genes in our families...we've been on the phone a good portion of the evening. 

Our List for Santa This Year

-We get an appointment tomorrow at Children's for the sweat test

-Kenneth King can produce enough sweat

-The results come back quickly

-We get a negative this time and a conclusive false positive for Cystic Fibrosis

Thank you all for being a part of our lives...you managed to hold us up over the last weeks.

Love,

Ginger"

65 Roses

This is one of the first things that made my heart smile when I learned about Kenneth King's diagnosis.  I hope it can bring some peace to your heart as well.

By the way www.cff.org is an amazing resource!!!

http://www.cff.org/aboutCFFoundation/About65Roses/

About 65 Roses^®

"65 Roses" is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.

The Weiss brothers, Richard, 5; Arthur, 7 and Anthony, 16 months.

After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.

He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."

Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.

65 Roses^® is a registered trademark of the Cystic Fibrosis Foundation.

Updated 09/19/06

Our Introduction to Cystic Fibrosis

This email was written January 5 after Kenneth King's first appointment with Dr. Ledbetter.  Mama had a lot to learn at this point!!!


Hi Family!

Sorry to get this out so late, but we didn't get home until 7:00.  Kenneth King's appointment lasted from 1:30-5:00.  Mama and I met with Dr. Ledbetter, head of the CF clinic, Charity, CF nurse, and Melissa Moser, FNP in the CF clinic.  Alex was able to be on speakerphone and listen to the conversation, but the clinic gets horrible reception:(  He was there in spirit!

Kenneth King has maintained his weight at 6 pounds 13 ounces.  He was weighed by the genetics counselor two weeks ago and was the same weight.  Since he has pancreatic insufficient CF this is not surprising.  Dr. Ledbetter stated that he was glad that we could give Kenneth King a nutritional boost now because it will make a tremendous difference in his outcome.  He is still 19 1/2 inches...his fingers, toes and feet must be 50% of that..longest I've ever seen!

The two mutations that Alex and I passed to Kenneth King mimic one another which means that he will present with "classic" CF symptoms.  This also means that if we can successfully treat one of the mutations then we are that much closer to golden!!  Delta F508 is the most common form of CF and is the most studied.  Clinical trials are getting very close on this mutation.  There are studies currently being conducted in Israel for W1282x seeing as it is the most common in the Ashkanazi Jewish population.  I asked if a study is done in another country if it is accessible for US citizens.  Dr. Ledbetter answered that the CF community shares and shares equally.

We learned that the Chattanooga CF clinic is part of the Vanderbilt CF clinic, but will be affiliating with the UT medical center soon in Knoxville.  There is a loose group that works together in this region.  Dr. Ledbetter has close connections with doctors at the Memphis CF clinic, Birmingham CF clinic, and Knoxville CF clinic.  He knows all about Mississippi and worked in Jackson for a time.  It was nice to make a connection there.  He is even knows my childhood pediatrician's son!

We will still continue to see our regular pediatrician especially when sick seeing as sick children are NOT allowed at the CF clinic.  Dr. Ledbetter also advises against CF patients convening for fear of superbugs become monsters!  Dr. Meredith, pediatrician, will work with Dr. Ledbetter in treating Kenneth King.  We will return for visits at the CF clinic every 2 weeks gradually reducing to every 3 months.  This course of treatment depends on Kenneth King's reaction to the treatments.  Our first follow up visit will be January 24th at 9:00 AM.  Baseline blood testing will be done at this appointment.  We are also waiting on approval from BCBS to administer a once monthly RSV-neutralizing antibody until RSV season is over.  The link is as follows: http://www.rchsd.org/ourcare/programsservices/g-h/homecare/rsv-synagis/rsvfaqsforparents/index.htm.
He will have a repeat Sweat Test on February 6th at 9:00 AM.  Dr. Ledbetter sees this as further clarification that we do have CF.  Emma Virginia will have a Sweat Test on Monday at 9:00 AM to determine if she requires further testing.  SOP states that she should be tested since her sibling has tested positive.  She is NOT exhibiting symptoms.

I asked about phase III clinical trials for which Kenneth King might be eligible.  There are none currently.  Clinical trials include adults initially and then filter down to young children.  There are not any trials for Kenneth King's mutations that will be marketable in the near future.  However, Dr. Ledbetter does believe that Delta F508 may have a treatment by the time Kenneth King would be eligible to take it (in 7 years). http://www.cff.org/research/ClinicalResearch/FAQs/VX-770/ This is a link to some information about a company, Vertex, and VX 770, the treatment that it is researching.

I asked if there are positive or negative things to look for and what to do if negative things are noted.  A serious cough that lasts more than 2 weeks or a puffy belly are two examples I was given.  CF patients are expected to cough because that is how they release the secretions.  Eventually, Alex and I will need to administer respiratory therapy by clapping our hands on Kenneth King's chest or thumping his chest.  There are also other therapies (such as a vest) that can help at a later date.  It has not been suggested that we start either of these things currently.  One very positive sign would be weight gain within two weeks.  He is expected to gain an ounce a day with the enzymes we started today.  More about that in a second...

Dr. Ledbetter suggested some tips to maintain health which is 75% of the battle.  Limit exposure to crowds as much as possible especially during cold and flu season.  Have all family vaccinated for the flu especially anyone who visits the home for extended periods.  If you are coming to visit please get vaccinated.  Wash hands as often as possible and use hand sanitizer as much as possible.  Do NOT allow him to be around anyone that he does not have to be around that is visibly ill, sneezing, coughing, etc.  One thing to remember is that a cold to us can be deadly to him.  He is not allowed to be around any smokers because we want to be sure he heads into the eye of the storm with the healthiest lungs possible. Dr. Ledbetter is not concerned about pets.  The bacteria that Dr. Ledbetter is most concerned about is explained at this link http://en.wikipedia.org/wiki/Pseudomonas_aeruginosa. 

Today we were given Creon which is a medicine used to treat people who can not digest their food normally due to pancreatic insufficiency (the pancreas does not make enough enzymes).  Kenneth King did an awesome job of taking his first round of medication!!!  He will take the enzyme before he nurses every time.  The capsule is opened and the beads are sprinkled on applesauce (just enough to "deliver" the beads).  We can use a wide mouth syringe or a very small baby spoon.  Tonight Nonie gave him his applesauce by spoon and he did great!  He will also be given a Vitamin A, B, D, E, and K plus zinc once daily by dropper.  We'll wait until tomorrow for that one...it has been a long day:)

Each person we spoke with stressed how available they were to their CF family.  Calls are returned promptly and we will have access to any of the staff at the CF clinic.  The staff includes a social worker, dietitian, Nurse Practitioner, Pulminolgist, Nurse as well as support staff.  I felt very confident about our meeting today!

I was told time and time again that CFF.org is the best place to go for research. I was also given a CF "manual" of sorts. 

Alex, I hope I can speak for both of us and I think I can.  We are doing our very best to control the things we can and pray that God takes care of the rest.  We are going to celebrate this beautiful child the same way we celebrate Emma Virginia-wholeheartedly!  We will do everything we can to stay healthy so that we are around when a life saving treatment is made available.  Every life faces obstacles at some point...we know Kenneth King's ahead of time...and will fight like hell to overcome it!  We hope that you will join us:)

So, raise your glass to research and good health---lots of love,

Ginger

Pear Tree

My married name, Birnbaum, literally means pear tree.  I chose PearTree for the blog name because it carries beautiful symbolism.  The pear symbolizes longevity because the pear tree generally lives a long life.  The pear tree is also known to symbolize mankind's salvation.  In some places the pear tree symbolizes a female baby's birth due to fruitfulness and longevity.

It should be noted that I created this blog under the name PearTree in January of 2012 shortly after my newborn son was diagnosed with Cystic Fibrosis.  Initially, in the midst of the devestation, I imagined that I would write solely about the trials that were being presented.  I kept the blog private until now (October 2012).  I am happy (and relieved) to say that this will NOT be a blog with the narrow focus of trials and tribulations.  That would be an injustice to the many blessings and happiness of life.