Wednesday, October 9, 2013

Day 3: Little Kian vs. CCMC...EVERYONE WINS!

We were ecstatic, elated, and amazed to discover that our GI physician had "put a rush" on the biopsies so that we could have an in-person discussion about the medical component prior to leaving Cincinnati.  As we all sat down to talk this morning, we were so happy to learn that Kian has GERD and not EE.  His medicine appears to be keeping the inflammation at bay.  There is evidence that his reflux was severe at one time, and that he is likely still having a minor amount of reflux.  He has learned that eating isn't fun, and has decided not to do it.  However, at this time, our doctor feels like we can avoid the feeding tube and attempt to reverse his feeding cycle!  Yay for no feeding tube!!!
They explained that I have essentially functioned as his feeding tube for the last year.  I have been waking up every couple of hours throughout the night and feeding him when he was too sleepy to realize what was happening.  Our plan is to attempt to reverse his eating cycle and (with the use of medicine) force him to be hungry during waking hours.  I have only seen him hungry one time in his life, so this should be a challenge.  However, I am willing to do/try anything!  We have a well detailed plan that I cannot wait to share with our PHENOMENAL preschool teachers and our SUPER FANTASTIC Speech Language Pathologist, Mrs. Jan.  I am so honored to have people in our lives that pray for Little Kian and love on him every day.  He is truly a loveable, happy child, and I really am praying for a positive outcome!

As for the feeding therapy, the Hot Pepper gobbled down the Nutrigrain bar while simultaneously snubbing the muffin, homemade milkshake they crafted just for him, and the strawberries.  We have one more day to try to earn the cool wind-up turtle from the prize box...

You know, I will take GERD (or EE for that matter) any day.  We have seen so many terribly ill children at CCMC and it makes me so sad that families must face illnesses/diseases that are not curable.  I am thankful that my baby has this, and I hope that God will use this illness and our devotion to our baby for His glory.

People have been so kind to call, send texts, read all of my crazy blog ramblings, and do kind things for my babysitters (a.k.a. Granny and Big Daddy).  Granny, Big Daddy, Cavan, and Airlie have had meals brought to them EVERY NIGHT since we have been gone.  How nice is that!!!  Airlie appreciates food more than anyone realizes, so I am sure she has been in heaven!
We completed our day with a fun trip to the zoo!

Just for public record, Kian did not tear the ear off of the rhino at the Cincinnati Zoo.  He is rough, but we didn't do it!

Kian wanted no part of petting the camel, but didn't mind if daddy did.

We rode the carousel and Kian did not like all!  It made a crazy it needed WD40 or something.  That's my expert opinion on their carousel problem...ha ha

Daddy's feet were tired so we took a train ride.
Cherishing Your Prayers and Grateful for Blessings in Disguise,

Tuesday, October 8, 2013

Day 2 Results: Kian vs. CCMC!

We began our day with a drive through Devou Park.  The view of the Cincinnati skyline was magnificent!

At 10:30, we headed to our appointment at the interdisciplinary feeding clinic at CCMC.  I must admit that I was scared.  Scared that Little Cayenne (as he was called twice today) would yell at the nice people, throw food at them, or run from them.  Fortunately, they are PROS!  They made fast friends with him through the use of bubbles, and he was actually (surprisingly!) cooperative. 

We initially discussed what our goal for the three days should be.  Should we focus on eating more foods or should we focus on consuming more liquid independently?  They are both good goals.  We need Kian to eat a greater quantity of foods so we can increase his caloric intake.  Ninety-five percent of his calories now come from his formula.  However, we also need him to drink his formula independently.  Currently, he will only take it in a bottle from me when he is sleepy.  Additionally, we must factor in the medical component.  If he is hurting/refluxing, the food is going to cause discomfort, making eating unpleasant.  To truly fix the problem, all of the team agrees that the medical issues must be addressed first.  However, the biopsy results will tell the story and they will not be in for a week.  We finally resolved to do a short term goal of trying to get Kian to drink his formula from a Dixie cup and trying to get him to increase his variety of foods.  Since he has been drinking yogurts, they decided to attempt to transition him into a cup of yogurt rather than a drink of yogurt.  They were able to get him to spoon yogurt into his mouth and close his lips around the spoon.  He earned a prize!  However, drinking the formula was more than he could handle and he decided the next prize wasn't worth it!  He is still talking about the wind-up turtle though, so maybe he will agree to their terms tomorrow and earn the turtle.  At our next session, a new tray of foods will be presented along with some new tips for us on how to encourage him to eat them.
We also discussed the feeding tube with the feeding team.  Their opinion was that a tube would likely decrease his food intake.  However, Chris and I decided that if the GI physician feels as if Little needs the nourishment from a health/medical perspective, we need to trust his opinion.  The physician will meet with us again tomorrow.  We will keep you posted!
We spent the rest of the afternoon at the Cincinnati Museum Center.  We had so much fun!

Crawling through the tree house tunnel!

Driving Mrs. Daisy (or Mr. Daddy)

The polar bear was a bit scary for the Itty Bitty

"No Daddy, don't let it eat me!"

Loving our time with our toe-headed, superhero shoe wearing Little Juan Carlo! *

We went to eat at The Outback tonight.  Mom and dad have given us gift cards for our last two anniversaries, and with three kiddos under five, we haven't had an opportunity to use them.  It was TOTALLY like a date because this happened...

As for our progress today, CCMC won one for the yogurt.  Kian won one for the formula.  I look forward to our appointment tomorrow and am anxious to meet with our wonderful doctor again!
On a non-Kian note, I am missing my other two little pieces.  Granny sent me a funny text this morning.  It said, "Cav said he loves mama, daddy, and Kian.  Airlie wants you to take her to see the pandas and she loves you too."  I guess we will go see the pandas soon...
Cherishing Your Prayers,
*  In case you haven't heard the Juan Carlo story, here it is:
For some unknown reason (to us), Airlie has been calling her little brother "Juan Carlo."  Well, it infuriates him and he yells, "No Air-D, I two!!!"  Yes, he understands "Juan" to be "one," and it makes him crazy mad!!!  Hence, the little one has inherited yet another nickname...Juan Carlo.  He kind of looks like a Juan Carlo, eh?

Monday, October 7, 2013

Day 1 Results: Kian vs. CCMC!

Our day began at the GI clinic.  The most difficult part of this routine visit was measuring Little's height.  It always is!  He hates that bar being lowered onto his head!  CCMC won that round however...
Our discussion with our GI physician was great.  As always, he spent approximately 45 minutes with us, answering all of our questions, and discussing our options.  The good news is that Kian has gained 1.2 pounds since his July GI weigh-in.  This places him in the 10th percentile for weight, which is higher than he has ever been!  Hopefully, we are saying goodbye to the days of the 1st (or no) percentile rankings!
We chatted a bit about feeding tubes.  The feeding tube is a last resort.  However, we have to move him forward in his feeding.  Sooooooooo.....if Kian performs poorly during his intensive feeding sessions this week, we will revisit this issue with our doctor on Wednesday.  Maybe...just maybe...feeding therapy will go well tomorrow and Wednesday, and we can avoid a tube.
After our GI visit, we had about two hours to spend at the hospital until it was time for surgery.  Two hours is a long time with a two-year-old and a forty-one-year-old (That's Chris of which I speak.  Not me.  I am nowhere near 41, just for the record)!

Little took a 45 minute nap....

I thought it would be a fantastic idea to take a photo for our blog with the CCMC sign in the background.  Kian?  Not interested.  Maybe even mad about the very idea.

Still mad....

And still mad...

We spent some time waking up Daddy.

Chris loving on our boy before we walked up to surgery.  What a precious baby!  I am FOREVER smitten!

When we checked into surgery, the nurse gave Kian a Looney Tunes book about Taz.  I think Taz may be his new favorite!  We waited again and went through all of the pre-op processes.

The pre-op folks at CCMC know what they are doing.  They were stocked with Transformers and bubbles.

When it was time for surgery, they allowed Chris and I to go into the surgery room as he was being put to sleep.  I was grateful they were kind enough to allow us to be there.  However, it was a very weird and scary experience.  Bless his heart...he cried himself to sleep.  They allowed us to give him kisses, wipe our tears, and then led us to the waiting room.
About twenty minutes later, we met with our doctor.  Based on what he viewed, there were some characteristics of EE present and some characteristics of GERD.  He told us that it was not obvious exactly which disorder Kian has.  The biopsies that he took will tell him more, and the results will be back in about a week.  There were some fairly large blisters on his esophagus, but they were not bloody or red.  The doctor feels as if these blisters indicate some level of reflux is still occurring, and has probably occurred more severely in the past.  His stomach and intestines looked good. 
In summary, we will know more in about a week as far as a correct diagnosis and treatment plan.  As for the feeding tube, it's all up to Kian's performance tomorrow at the interdisciplinary feeding clinic.  Round one winner?  It's certainly CCMC.  I love this place!  As for round two, the interdisciplinary team had better get ready.  I think the Little Hot Pepper may try to win tomorrow's fight!
As for tonight, I think he will just sleep...

Cherishing Your Prayers,

Little Kian vs. Cincinnati Children's Medical Center: Day 1

Headed to Cincinnati!

We are in Cincinnati for a week of appointments for the Little Cayenne Pepper (a.k.a. Kian).  We drove here yesterday in the pouring rain.  He slept ONLY one hour of the drive, and asked to be held the other four hours.  Since he was so restless, we took our time, stopping along the way.

Although we are grateful for a safe journey, we are keenly aware that today is a big day.  At 10:30 this morning, we meet with Kian's doctor for our quarterly appointment.  At 3:30 this afternoon, he is going to have an endoscopy.  The doctor will take some biopsies so that he can tell if the diagnosis is correct and if the medicine is working. 

I am not a real fan of days that my baby has to be put to sleep, however, as my friend Mike told me in a beautiful letter, "Expect the doctor to pinpoint exactly what the problem is with Kian.  Expect your little guy to heal."  That's what our prayer is...healing.

Let's do it!

Love, Stacy

P.S. Granny and Big Daddy are babysitting our other two loves.  Everything seems to be going well with them.  However, this morning, Granny sent me a text that Sissy's pants seemed too tight!  Ha ha...stretch them Sissy, stretch them!