Two Major Victories!

We have been waiting on two important things and they both happened today!  These two "victories" are on total opposite sides of our fight for Stanton's health...but to me they both represent progress.

I recently announced that we are going to the Cincinnati Children's Hospital for an appointment on November 11th.  Very exciting news, right?  Well, what I haven't posted about is the fear that this visit may not be covered by insurance.  Because Stanton already has a Gastrointerolgist (GI), insurance companies consider visits, like the one we've planned to Cincinnati, a duplicate service.  We've been investigating how to get this visit covered.  After doing some digging, I realized that the GI we will meet with in Cincinnati also has specialities including Hepatology and Nutrition.  These extra specialities are listed in his bio, printed with his credentials and are included in all those letters at the end of a doctor's name.  We submitted a letter to our insurance company pointing out these extra services and have just been waiting.  John and I have also been looking at numbers, trying to work out a Plan B.....but as of today, we no longer have to worry about a Plan B.  Our insurance coordinator sent us an email stating that all services at the Cincinnati Children's Hospital will be covered at the PPO level!  This means they've approved the facility as an "in network provider."  God is good and continues to provide!

The other big news is this:  Stanton pooped today!  Okay - that may sound a little crazy?  He hasn't had a bowel movement since last Thursday.....seven days ago.  So, to us, it's not crazy at all!  It's a huge relief for our household. 

Thank you for your continued thoughts, notes and prayers. They mean so much to us!   

If I Didn't Have You To Wake Up To

Lyrics by Carole King and Gerry Goffin

What would I do if I didn't have you to wake up to each day

 

Who'd take my troubles and put them in bubbles and make them burst away

And where would I find the innocence that tells me it's okay

If I didn't have you to wake up to each day

Should I be strict, should I be mean, should I teach you discipline

The times say yes, but I say no, you'll learn it from within

I know that every mother thinks her child is the prettiest one

But you've got a smile that can't be refused, it even brightens up the sun

I wish I could make time stand still and just keep lookin' at you

But that's something even Old Methuselah wasn't able to do

I hope you come around to see me when I'm feeble, old and gray

Oh, what would I do if I didn't have you to wake up to each day

Oh, what would I do if I didn't have you to wake up to each day

Well That Didn't Last Long

So here I sit, in an early 90’s t-shirt. After boldly claiming an end to the madness yesterday…the madness decided to stay and brew a bit longer.

Yesterday I got “cute” and put on some designer jeans and a turquoise linen shirt. By 8:45 pm the entire kitchen, Stanton and my cute outfit were all covered in throw-up. This morning I dressed in capri pants and a button down which was covered in throw-up by 8:30 am. Determined to do my best in staying “cute” I put on some black linen pants and a light blue shirt. Sadly, this outfit was covered by 11:45 am. I threw on a pair of cropped jeans and a designer t-shirt for the next go ‘round. It lost the battle of cuteness by 3:15 pm and so had I. At 3:45 pm I found myself back in a comfy, mis-matched pj ensemble; today’s combo being purple bottoms and a college music t-shirt…..which was covered in puke at 8:15 pm.

This is what my day entailed

Throw-up

Cleaning

Laundry

Old pj bottoms and t-shirts wash with towels and bath mats so much easier than linen!  I guess "comfy" will just have to suit me for a bit longer.

In all seriousness, we could use your prayers. It’s so disappointing to be here again, in a place that’s all too familiar for us. Stanton had a great Thursday. He was happy and eager to lick and try bites of this and that throughout the day. Today he is paying the price. He has only been able to keep down a few sips of water and sweet tea. Mark 10:16 tells us that “Jesus took the children up in his arms, put his hands upon them, and blessed them.” Stanton sure could use a blessing.

 

Cleaning Out Closets

A couple of weeks ago I found a photo album of our trip to Australia (pre-baby).

John and I look so put together. Cute haircuts, matching clothes, fit bodies and just a general calm joy surrounds our faces. I notice that today, for the third day in a row, I’m wearing my new favorite clothing combination of pajama bottoms and old t-shirts. Today’s combo features bright orange pajama bottoms and a t-shirt dated 1992. Light bulb moment: I now see clearly that our lives have been spiraling for the last three years. John and I have steadily hung on, keeping our heads just above water.

This spiraling I’ve come to acknowledge continues into our closets. Closets speak volumes about our circumstances, don’t they? Ours scream OVERWHELMED. They are in complete disarray....actually exploding...things are starting to poke out by the door hinges. Sorting through stuff just hasn't been a top priority for us....but, now, we are out of room. I'm sure something I can't find is somewhere waiting to be found in my closet. How does this happen?

For us, it began in February, 2008, when at week 17 of my pregnancy, I was diagnosed with complete placenta previa and put to bed.



taken the day before my c-section

In June, 2008, we came home with our new little man, but seven days later, I became really sick and after several weeks of oral antibiotics, was eventually treated for staph infection via a PICC line in my right arm. It was in the midst of all of this craziness that Stanton’s violent vomiting began. I remember always keeping a plastic bag around my arm because my PICC line couldn’t get wet and I was constantly covered in puke. What a sight we must have been to all those visitors who stopped by to meet Stanton!

I’ve made the conscience decision to stop the madness today! How can we move forward when our lives are still full of evidence of the the drama we’ve experienced?

Today, I claim 2 Chronicles 15:7 “Be strong; don’t be discouraged, for your work has a reward.” Thanks to my Mom (she has Stanton for the day) for giving me this day to create “keep,” “sell” and “toss” piles.  We are moving forward, slowly, but surely.

off Track

 Stanton has been just a little “off” for the last couple of weeks.

 He usually drinks an average of 32 oz of his formula each day, but lately he is down to maybe 15 oz per day. He is grouchy, difficult to entertain, and a bit rough in his play. He hasn’t thrown up since Friday, but is gagging and throwing up in his mouth a lot. He is even gagging to smells lately. He’s refusing juice and water.

He also isn’t going to the bathroom on his own so we’re back to double doses of Miralax. Stanton’s color is a bit “gray” in my opinion. I guess I’m complaining a bit, when really, we are doing okay. Although we are in a funk, we are home and able to gallivant between therapies and playdates. It’s just been a few really long days for us.

We finally received a call from the feeding clinic in Atlanta stating they have an evaluation spot for us. After lots of prayer, thought and input from our therapists, John and I decided to keep all of our doors open for Stanton. Thanks Shirley for reminding us to not give away our blessings! So – I scheduled a December evaluation for the feeding clinic.

If our Cincinnati Children’s visit brings about answers and a road map, I can cancel the feeding evaluation. However, if the doctors in Cincinnati say that a feeding clinic is the best path for Stanton, we’re already on the schedule!

Please pray that the better road for Stanton will be clear and obvious to us. Pray that the doctors we see hear the cries of our hearts and lead us to an answer. Thank you!

We're Going to Cincinnati

I could hardly contain myself as I re-listened to the recorded voice on my answer machine for the third time: “Bryant Stanton Bennett has an appointment with Dr. Scott Pentiuk at the Cincinnati Children’s Hospital on November 11th at 1:00”. Twenty-eight days from today! Cincinnati Children’s is rated as the NUMBER 1 facility for pediatric digestive disorders. The hospital has over 25 Gastroenterologists. After a review of our faxed records, we have been matched with Dr. Pentiuk. He specializes in Gastroenterology, Hepatology and Nutrition and has published research about Eosinophilic Esophagitis in infants and toddlers with special interest in the dissociation between symptoms and the child’s histological severity in symptoms. 

Now that our plane tickets are purchased and the hotel has been booked, I’m nervous. Are we ready for this? Can we hope for an answer? Will we be disappointed? Is this too extreme? – after all, there are several children’s hospitals much closer that we haven’t tried…

As I watched Stanton’s all too familiar pattern play out this week….tasting foods at a meal, a day of chronic diarrhea, three days of constipation, refusing to eat/drink for a day combined with increased vomiting each day…our appointment in Cincinnati doesn’t seem so extreme.

After five days of wet only diapers, our appointment at Cincinnati Children’s Hospital is clearly not extreme. Having a two year who requires 2 adult doses of Miralax in a day simply to have a bowel movement is not normal.
 

I am again reminded while sitting at a local Mexican restaurant, amazed at Stanton’s curiosity with John’s guacamole. I watch Stanton take the tiniest of licks, then scream and cry in pain as he attempts to swallow. Within seconds, the vomiting begins…all over our table, drawing an audience from those seated around us.

At 11:30 last night, the gulping cries blare over the monitor. Holding Stanton over the toilet, the next 28 days seem like they can’t come soon enough.

Will we leave Cincinnati with answers? Will we feel like it was a wasted trip? Are we doing the right thing? I expressed all of this to my dear friend, Gianna, and she reminded me of Romans 5:5 “And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit…” Thanks Gianna! I needed to hear this and be reminded that God is guiding this journey.

 Continue to pray for us as we fight to help Stanton feel better.

Progress in Pictures

Our past week in pictures.....

Creating a chocolate mud pit for his cars.

  

Notice the chocolate on his chin?!?!?!?!

A brave moment of tasting

He actually licked each item on his tray!

Mind Shift

For those of you who grew up in the late 70’s/early 80’s, as I did, you probably aren’t a food waster and you certainly don’t play with food just for fun. This, afterall, is unacceptable behavior. “Just think of all those starving children in Ethiopia!” Now I’m all grown-up and have a son who doesn’t eat. His therapists are alerting me to the fact that he has a broken relationship with food. This “broken relationship” isn’t getting better….it’s actually getting worse every day. Stanton doesn’t even like to look, smell or touch some foods anymore…

…I clearly remember the summer after fifth grade. I spent some time with aunts, uncles and cousins in Kosciusko, Mississippi. One afternoon we all sat around the table at my grandmother’s and shared a meal from Kentucky Fried Chicken. I’ve never been as sick as I was later that day. All I could do was lie on one side and hold my breath. The pain was so severe! My Uncle Ted eventually took me to the ER where my Uncle Ed was on call. He gave me some medication to induce vomiting and empty my stomach. It was a horrible experience! To this day, I will not eat fried chicken or potato salad from a restaurant or at a function…

…this is how Stanton has experienced food…each and every time…a horrible experience. No wonder the relationship with food is “broken”.

How do we help Stanton understand that not all food is scary? How do we begin to build trust? The therapists are encouraging me to simply play with food. Our new goal is to get Stanton involved with touching, smelling, and playing with food. No hidden agenda – no expectation of eating – no asking him to “take a bite.” So, we’ve made rice crispy treats (with vegan butter), mashed bananas for banana bread, turned chocolate syrup into mud pits for his race cars and created Mr. Potato Head out of real potatoes.

The voice inside my head is reminding me that I’m wasting food and making a mess. “Yes,” I answer back, “I am wasting and playing and making a mess.” It’s okay. I remind the voice in my head that if Stanton was an eater, I’d be buying these foods anyway…and we just never know when Stanton might decide to take a lick.

 

The Music Man

The war with paper has begun...a whole two notebooks full of Stanton's history, tests, results, illness, procedures, setbacks...all copied and on their way to the Cincinnati Children's Hospital. The top rated digestive disorder pediatric program in the country, I might add. I'm thrilled to say that the nurse, Sue, treated me like a mom, not a number, when she promptly returned my call within 12 hours! So far, I'm impressed.

I live with the reality that Stanton may be as well as he ever will be.

My hope, however, is that someday, we'll have an answer and the best treatment.

Until then, I'm fighting the fight and enjoying the moments.