Wrapping up 2010

As 2010 comes to an end, we have great news....Stanton does not have Cystic Fibrosis.  The test results returned negative!  John and I really didn't think this was the issue at hand.  Having the negative results though, is really a sigh of relief for us.

On Monday we took Stanton for blood and urine samples.  These will be sent to the Mayo clinic and tested for a variety of metabolic disorders, liver enzyme functions, organic acid functions, plasma levels and fatty acid oxidation.  I'm not sure when those results will return...but I'll of course keep everyone posted as soon as we know something.

2011 should be exciting: full of answers and progress!

On Wednesday Stanton and I traveled to Hattiesburg and had a behavior psychology evaluation with Dr. Kimberly Bellipanni at Will's Way.  She was wonderful!  I'm so excited to have found her.  After spending the last six years at John's Hopkins working with FEEDING, she decided to move home to Mississippi and open a clinic!  We will get started next Thursday with regular feeding sessions. I'm excited about her plan and her approach. I think it's a perfect fit for us.  I have homework before our first session! Dr. Bellipanni asked me to bring five foods, each in it's own container, to our next session.  Three should be something Stanton seems to enjoy and two should be something I'd like for him to eat.  This will be a stretch...maybe sweet potato puffs, marshmallows, veggie cheese, a chick-fil-a nugget, and toast?  That's about all he'll attempt these days.  I'm also to pick two movies that Stanton really likes and hide them away.  We will use these as motivators during the session.  She explained that this is much like when we go on a diet we give up dessert, then, the next time we eat our favorite slice of chocolate pie, it tastes even better than we remembered!  Well, for Stanton, food doesn't trigger that pleasure response, but movies do.  So, if he goes all week without watching Mater's Tall Tells, it will be a big motivator for him in our sessions. Cars Toon: Mater's Tall Tales (Two Disc Blu-ray/DVD Combo)

Open Doors

"When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us." 

~ Alexander Graham Bell

For two and a half years now, we've tried to gather doctors, specialists and therapists around us.  A team of experts all focused on Stanton's well-being...a team dedicated to finding answers...people ready and willing to fight for his health. Doors have closed along the way.  Roadblocks leading to detours.  Telling our story to any doctor willing to listen.  Telling our story to doctors not interested.  Learning who to push and who not to waste time with.  Many miles traveled in a quest for answers and solutions.  As 2010 comes to a close I realize that although we still are without many answers, a door has opened for us. 

John and I have made the difficult decision to stop trying to develop a "local" team of specialists.  It's exhausting and simply not working.  I spend all of my "free time" letting laundry pile up as I call every allergist in a 120 mile radius only to learn that they are not familiar with GI related issues nor the elimination diet.  I spend hour upon hour making appointments, faxing records, following up with insurance, traveling to appointments, telling our story - only to hear that they don't know....or have considered.....

A team is already in place and waiting to work with us!  So, we are Cincinnati bound!  Stanton and I will travel back to the Cincinnati Children's hospital in Febraury.  We will meet with doctors and have some testing done. Although traveling is difficult - it is the best choice for Stanton for this time.  Plus - I feel excited about this choice; like a weight has been lifted off my shoulders! We are now an integral part of a true team!  It's taken me two years to stop looking at the closed door....the dream of a local team.  But now that my eyes are set on the open door - all I see is hope.

When I'm With You...JJ Heller

To fully enjoy this video, you may want to pause my blog music first. 

Joy

Merry Christmas everybody! 

I've changed the background of the blog in honor of Christmas.

I made a mental shift over the weekend....finding a name or diagnosis for what's going on inside Stanton's body doesn't necessarily mean we will find a cure.  Finding a name will not change who Stanton is or who he can become.  Raising him to be a strong, fun, independent, world changer is up to me...not a doctor.  This is a profound "A-HA" moment for me. An internal break through.  Don't worry, we're still fighting for Stanton to feel good everyday - not just a day here and there.  Just today I was on the phone with a nurse from the team at Cincinnati Children's Hospital.  I reviewed with her all we've accomplished and looked into this month.  I was quite surprised with how long the review list was!

List:  started medication for gastroparesis, introduced egg with bad results, tested for Cystic Fibrosis and are awaiting results, have lots more genetic lab work ordered due to high levels in amino acids from previous testing, met with allergist (this is our current road block - both allergists we've seen don't think Stanton needs the skin test), saw our ENT, have spoken with our pediatrician several times, can't get our GI to return our calls, have started hanging out with our speech therapist in the radiology room getting Stanton ready and comfortable to complete the swallow study.

Whew!  We've been busy!  And, we will continue to be busy, however, I've decided the laundry can get folded later and the dishwasher can stay full.  When Stanton wants to play cars, we're playing cars!  We have also made the difficult decision to NOT travel over the Christmas holiday.  Thanksgiving was just awful for us....so, we're staying put.  I'm sad to not see my extended family, but really excited about Christmas morning at home. 

Yes, Stanton would love to have this car for Christmas!  But....it doesn't quite fit under our tree.  Not to mention we have several more years before he can drive! hahahahaha.  Stanton would like for Santa to leave hot wheels and a Buzz Light year with buttons under the tree.  So sweet and innocent and full of the wonder and joy this season naturally ushers our way.  We just have to be willing to stop and accept the gift of joy and innocence. 

Still Searching

Stanton is still just not himself. He has thrown up at least once a day (yesterday three big times). His nose is constantly running, his eyes are watery and his cough is still croup sounding. He seems to tire out easily when playing so we’ve just been watching a lot of movies! I think I have all three Toy Stories memorized. And to think I was one of those pregnant moms who said my unborn child wouldn’t watch TV until the age of two! Hahaha…..if only I had known…..

I’m experimenting a bit with how to give Stanton his medications. When we came home from Cincinnati, I just put everything together in one bottle three times a day. Since Stanton has shown an increase in vomiting, John and I started to wonder if the medications were effecting each other. The doctors say they shouldn’t….but something just isn’t right. So, this week, I’m putting a couple of medications in one bottle and the others in the next. He’s still technically receiving all meds 3 times a day (that is when he drinks all of his formula for the day….which actually hasn’t happened in a while). Anyway – I am hoping to land on the right combination soon. Or maybe, after 6 weeks of trying, the team will decide we aren’t on the right medications and we’ll start over with something else.

Stanton and I survived the cystic fibrosis test last Thursday. He was nervous and scared because we back in the lab. I assured him there were no needles, but I don’t think he believed me until it was over! The nurse was sweet and gentle. The test was really simple: they cleaned his forearm with alcohol, then attached two wax looking circles to the area. The nurse called them “watches” as the circles were attached to an elastic band much like a watch band. The “watches” were attached to a box with wires and held on his arm for about 10 minutes. They sent an electric charge to Stanton’s arm which stimulates sweating. The nurse removed the two circles and replaced them with one metal “watch.” She then covered it with saran wrap, plastic, a glove, an ace bandage, a bag and Stanton’s long sleeve. The instructed me to run Stanton around the hospital and get him hot….keep him moving. After 45-minutes or so, they took everything off and we were free to go home. The circle was full of Stanton’s sweat which will be sent in for the testing. I’m not sure when the results will arrive, but, based on our past lab experience, it will be around 6 or more weeks.

Our geneticist, Dr. Martinez, sent us the letter explaining the results of the amino acid lab work from August. I’m not really sure what it all means, but Stanton has elevated levels of dicarboxylic and 3-hydroxydicarboxylic acid.  We need to go back to the lab and have some plasma tests, metabolic tests and a repeat of the amino acid test. I believe these tests require both blood and urine samples.  The letter stated that this abnormality in enzymes and acid levels can be seen in patients with metabolic disorders including fatty acid oxidation defects or organic acid defects.  I'm clearly just stating the letter here and can't yet say what any of this is, what it could lead to or what it might look like.  I do feel, however, hopeful that we are one step closer to something here though.

We’ve scheduled an initial appointment with Dr. Holland, our new allergist for this Friday at 2:00. This is just a meet and greet - not the actual allergy testing. 

In our house, we call the season between Thanksgiving and Christmas Advent. For many years, I thought of Advent as a time to remember the miracle of Jesus’s birth experience and what that experience means to me. The story of the birth of Christ is amazing, don’t get me wrong. Who could really top the miracle of God becoming man through a virgin? However, since having Stanton and dealing with all of his health difficulties, this Advent season feels completely different. I have truly used this time to focus on the specifics of the season. Last week’s Advent focus was “hope.” I tossed around questions such as

What is hope?
what does hope look like?
What gets in the way of hope?
How do I live in hope?
What are my hopes?
How does hope manifest itself in my life?
Where does my hope come from?

This week’s Advent focus is “peace.” While I feel I live in hope and have hope for Stanton’s future…..peace is a different story. I’m really wrestling with this idea. Instead of peace, I find worry and to do lists and distraction inside my head. How can I stop and feel “at peace” with so many unknowns and so much to do and fight for? Do the words fight and peace work together? A fight is what we’re in the midst of. I feel we are fighting for answers, fighting for solutions, fighting for doctors to listen and work hard for Stanton. I’m not sure I’ve even considered the possibility of peace. However, I do believe that there will be a day when I am at peace with even the unknowns and the unanswered.

In honor of this Advent Season, I must share this with you:

Verse 12 is our promise of a Savior. Verse 13 answers our human condition and how I am trying to live daily.  Verse 14 is my hope for the therapists, doctors and nurses who surround Stanton.

Romans 15:12 - 14 
 12) And again, Isaiah says,


“The Root of Jesse will spring up,
one who will arise to rule over the nations;
in him the Gentiles will hope."

13) May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

14) I myself am convinced, my brothers and sisters, that you yourselves are full of goodness, filled with knowledge and competent to instruct one another.

Juggling

What a busy week….and it’s only Wednesday! We gave Stanton his last breathing treatment Monday night. He still has a nasty sounding cough, but now has short spurts of playfulness and being silly. He is also up to drinking an average of 15 oz of formula a day (still not close to the 32 oz he should drink, but an improvement). Now, if we could just get him back to sleeping through the night – that would be great! I’ve been sleeping with him sitting up in the la-z-boy since Saturday. When he lays down flat, the coughing and vomiting really get exacerbated, so the chair has been the best way to keep him comfortable.


Today we had an ENT appointment in New Orleans. Our appointment wasn’t until 1:30 so we spent the morning at the Louisiana Children’s Museum with my dear friend and her children. It was great to just be out, playing, visiting, and feeling normal for the first time in a while. Thanks Nikki for meeting me and spending your day with us.

The ENT said Stanton’s throat and ears look good. He seemed as frustrated as I am that another year is about to close and we still have no real diagnosis for this chronically sick little one who still can’t seem to eat. I do feel we have a better plan of action – but in reality – we are still just ruling things out and searching. The ENT ordered a sweat chloride test so we have to go back tomorrow to have this done. They only do the test at 1:00 so we just missed it for today. This test rules out cystic fibrosis. I really don’t think this is what we’re dealing with, but the ENT was surprised to realize that CF had not been ruled out already. Stanton has had tons of upper respiratory infections, croup, and pneumonias, so the ENT felt we should take a look. Wish us luck with that tomorrow!

I also received a message from Dr. Martinez’s nurse. Dr. Martinez is our genetic doctor. We had some genetic lab work done back in early September. The last call I received said everything looked normal, but they were still waiting on one test to come back. So….9 weeks later the results are in. The nurse’s message said the organic amino acid results show an elevated level of enzymes and acid so the doctor would like for us to have more lab work done to look closer at this particular issue and other possible metabolic disorders. That’s all I know. Once I receive the order in the mail, I guess we’ll have to go in for more lab work.

My pediatrician made a referral to a local allergist, but I still haven’t heard about when the allergy testing will take place. My hope was that we could get started on this before Christmas….but we are just sitting tight and waiting.


Juggling many balls in the air,

Ginger

The Traveling Blues

A whole week has gone by without any posts. I guess you can tell that we’ve been fighting an uphill battle with Stanton’s health over the Thanksgiving holiday. We don’t ever really travel or go anywhere. It’s simply too hard and Stanton always seems to get sick. Just a couple of weeks ago in Cincinnati, we ended up in the ER. Stanton swallowed some bath water, got upset, started throwing up and aspirated. The bathtub episode was quickly followed by the tell-tale strider breathing which landed us in the Cincinnati Children’s Hospital ER.

This time around was a bit more sneaky. After about 30 minutes in the car, Stanton started coughing. The coughing continued to escalate as we drove 2 ½ hours north to Mimmie’s house (John’s grandmother). He played well at Mimmie’s and had fun playing in the cold pasture – so far to run without restrictions! After lunch we traveled 2 ½ more hours north to my grandmother’s house. My Mamie moved into this very house when she was just 16 years old and a newlywed. My grandparents have both passed so the house is now empty, however, my mom and aunts stay at the house frequently and keep it ready for company. Stanton’s coughing continued to brew and grow deeper and more frequent. By the night, we were up most of the night with him coughing. By Friday, the wheezing and shallow breathing kicked in.

Friday night my Dad’s side of the family all gathered at my Uncle Ed’s house. Uncle Ed is a family doctor. He greeted us at the door and immediately noticed Stanton’s cough and breathing. I quickly explained what was going on and he asked to take a listen. He asked when Stanton’s last aspiration episode was and I let him know it happened two weeks ago in Cincinnati. Uncle Ed asked if anyone had diagnosed Stanton with asthma. He said the wheezing was really deep and in Stanton’s left lower lobe. He went to his clinic and brought back a nebulizer and some steroid shots. Every two hours he gave Stanton a breathing treatment, but after two treatments, the wheezing wasn’t any better so he gave him a shot. After an hour, Stanton’s wheezing was completely gone and we received the green light to drive home where our panda bear nebulizer was waiting in the closet. Uncle Ed said we should give Stanton a breathing treatment every two to four hours.
So, here we are at home, with a child who is miserable….coughing constantly….can’t get comfortable….can’t sleep for more than 45 minutes at a time….fighting the breathing treatments….won’t eat or drink anything……shall I go on?

Why does this always seem to happen on a holiday or a weekend, when all doctor offices are closed. Is this serious enough to warrant an ER visit? We haven’t decided yet…
John and I have two view points as to why Stanton got sick this go round, so I thought I’d share both and you can decide for yourself:

John’s version:
Stanton started coughing in the car. It got worse and worse and I think Stanton was allergic to something in the car. I did pack some hunting clothes that have been in the attic and maybe they were dusty/moldy. Then we slept in an old, old, cold house which I’m sure didn’t help.

Ginger’s version:
The night before we left, Stanton ate ¾ of a scrambled egg. The team in Cincinnati suggested we try offering it again to monitor the response. Stanton tried a couple of bites of egg in Cincinnati and got a big whelp on his checks. We offered him egg last week, but he only licked one bite and didn’t swallow it. I couldn’t believe he ate nearly the entire egg this time. He didn’t get a rash, or get sick and keep it down! The coughing began the next morning accompanied with a huge dose of all around grouchiness, and you know the rest of the story. From what I’m reading and learning about the elimination diet, this could be a response to the egg. Stanton’s track record of illness has 99.9% of the time been linked to his digestive system so I’m apt to look there first and find a connection.
Since I’m the one writing this blog (Ginger) I thought I’d say a bit more about my theory...

...The rules of an elimination diet are to offer a small amount of the test food and continue to offer it throughout the day so that by the end of the day, a “normal” amount has been eaten. Watch for symptoms. If symptoms occur during the night or the next morning, the tried food could be to blame. You are to stop offering the suspect food until seeing the doctor. Symptoms can include canker sores, bed-wetting, tightening of joints, ear fluid build-up, bowel problems, hives, and asthma. Children with delayed gastric emptying may have delayed reactions as the food is slowly being processed in their bodies.
Today is now a waiting game. Thank you in advance for your prayers and positive thoughts! I’ll try to keep everyone posted with the choices ahead of us.  I also must say a huge THANK YOU to my Bryant family.  Uncle Ed really helped Stanton and kept us from going to the hospital.  All my sweet cousins....I'm so sad I couldn't really visit with any of you, but it was great to just be with you all.

Ginger

More Medication Please!

This week we started Stanton on erythromycin three times a day. It came in a liquid suspension and it’s grape flavored. So far, I’ve been able to hide it in his “milk” and he hasn’t seemed to notice. I already hide his Prevacid/BufferBabies combination in his milk and it too has a sweet, strawberry flavor. I guess the grape and strawberry flavors complement one another! Erythromycin is an antibiotic that can speed up stomach emptying. The team we met with in Cincinnati feels that Stanton has Delayed Gastric Emptying. While we wait to schedule the official test for this disorder, the team wanted us to go ahead and add erythromycin. The doctor assured us that there aren’t any major side effects and that if we don’t see a change in a month, we can evaluate other treatment options.



Delayed Gastric Emptying is also called gastroparesis. It’s a condition that affects the ability of the stomach to empty its contents even though there is no blockage. I’ve just begun to research this new diagnosis for Stanton and have stumbled upon some really fascinating information. The cause of gastroparesis is sometimes linked to the vagus nerve. This nerve is the only connection between the brain and the digestive system! The vagus nerve has the job of coordinating the movement of food through the digestive system. With gastroparesis, the food is retained in the stomach. Gastroparesis is considered a neuromuscular disorder and is the root of nearly half of all gastroesophageal reflux disease (GERD) diagnoses!!!!! I find this point really interesting as Stanton has now been diagnosed with both gastroparesis and gastroesophageal reflux disease…..hmmmmm……

For those of you interested in reading more about families dealing with gastroparesis, click here for some more perspective.


The more I read and learn about how complicated our digestive systems are, and how closely the digestive system partners with the neurological system, the more I feel we should move the MRI up on our list of tests to complete. Stanton’s developmental pediatrician recommended it over a year ago, but for financial reasons, we didn’t proceed. At our last developmental pediatrician visit, the doctor mentioned it again. I asked if we could wait and have the MRI done in conjunction with another sedated procedure. Stanton hasn’t needed a sedated procedure since April, which I realize as I type this fact, is major progress! So, I’m just thinking I should call and get it scheduled. 

Weighing the Options

Dr. Pentiuk, the GI we met at the Cincinnati Children’s Hospital, helped us understand all of Stanton’s possible issues by using a pie chart. He said that Stanton’s GERD (reflux disease) is one piece of the pie. The other pieces are food allergies, delayed gastric emptying and food related trauma. Out of these four pieces, we have the GERD under control with Prevacid and BufferBabies.  Dr. Pentiuk would like for Stanton to have a Swallow Study to just make sure his swallow is normal. He also recommended a complete allergy work up and both the liquid and solid versions of the Delayed Gastric Emptying scan.

So now we have a decision to make: do we travel back to Cincinnati for all of this testing? Or do we try to find a spot closer to home? There are pros and cons to both choices.

I’m hoping to learn some more details about both the Blair Batson Children’s Hospital in Jackson, MS and the New Orleans Children’s Hospital. I know both of these hospitals have great reputations for cancer…but I need to learn more about their GI and Allergy departments. The New Orleans hospital is only an hour from us and Jackson is about three hours.

I really loved the Cincinnati Children’s Hospital. They are not only experts in the field, but the entire facility was completely child centered. We experienced a true team approach in Cincinnati and Dr. Pentiuk, the GI, was very clear about what our next steps for Stanton should be. So far, I haven’t experienced that anywhere else we’ve been. I feel like I’ve been calling the shots, doing the research, leading and pushing the doctors, faxing the records, getting everyone on the same page...and it’s exhausting! It sure would be nice to find a doctor, close to home, who would step up, take the lead and fight for Stanton’s health.

If I can find a real team in Jackson or New Orleans, then we’ll stay close to home. If not – the decision to travel back to Cincinnati will be an easy one to make.



Cincinnati updates

Yesterday we met with Cincinnati's Aerodigestive feeding team for Stanton's evaluation. Several different people came in and out while we were there. During our 4 hour stay, everyone took time to play with Stanton, watch him eat, drink, or attempt and asked us lots of questions. The GI doctor came in after reviewing the team's observations. He said that he felt Stanton had three main areas we should really focus on. Each are is Its on specific issue, but when layered on top of each other, as they are in Stanton's case, they confuse and complicate one another. The first area we need to target is the skin patch allergy testing. The team here feels that bloodwork testing, which is what we've had, isn't reliable in little ones. There are obviously some hidden allergies going on with our little guy. The tean here feels that his marked improvement since switching to an elemental medical formula is just proof of hidden allergies. Cincinnati has encouraged us to find a pediatric allergist who works with elimination diet kids.

The second issue with Stanton is with his stomach. They feel pretty confident that he has Delayed Gastric Emptying. This means that his stomach isn't digesting the food he eats in a timely manner. Which could explain why he usually vomits 3-4 hours after something. There are two scans to diagnose this, and medication to treat it. We just have to get our local GI on board with this.

And the final area we need to address is behavioral. Stanton has lots of trauma and stubborness built around his food experiences. Those behaviors make meal time and even taking medication impossible. The team would like for us to find a behavior psychologist to work with us and Stanton. This would give us tools to help recreate positive experiences with food.

So this is our new starting place!

We were to begin some of the above mentioned testing today, but Stanton threw up last night and was left that all to familiar barking cough and stridor breathing. We were up all night with him coughing and screaming. So, instead of testing, we went to the er and got a breathing treatment and steriod shots in each leg. Stanton is finally sleeping back at our hotel.

Ginger

Anonymous

Dear Anonymous,

I must first say thank you. I love to learn that all kinds of people, from all walks of life, are reading my blog. My little guy, Stanton, is so lucky to have people from all over the world thinking of him and sending good thoughts his way.

You are right about the hard-working professionals at Cincinnati Children's Hospital. I cannot wait to meet them! They have taken so much time with our case. Everyone I’ve spoken with has listened and treated me like a mom – not a number. I’m thrilled to have the opportunity to take Stanton to such a top notch center. I believe that God’s hand was in the midst of me connecting with Cincinnati. I’ve heard from several other families that they’ve had to wait several months before being seen. Once our referral was processed and our medical records faxed, we had an appointment within the month! So many moms have also asked me how I fought to get my insurance to approve our upcoming visit. I haven’t had a “fight.” Information has come to me! For example, while googling “feeding clinics,” a sample insurance company’s policy on out-patient feeding clinics pulled up as number three on the search list. I wasn’t even looking for information on insurance – it just pulled up. I believe that God brought this information to me…which in turn gave me the insight I needed to get our visit pre-approved.

I also believe that God has also positioned people in our lives to help out. When my husband went to college, he was assigned a roommate. They didn’t know each other; had never met. But after living together in the freshman dorm for a year, they became great friends. We could have never known that this very roommate and friend from the past would today work just around the corner from the very children’s hospital we are headed to.

It is because of my faith in my God that I feel I can continue to fight for Stanton’s health. My God sustains me, gives me strength, offers me hope, gives me glimpses of pure love and so perfectly orchestrates things around me – it is more than any human could possibly arrange or fathom. I can’t imagine going through all of this without this kind of hope. The hope that my life matters. Stanton’s struggles have a purpose. It is something bigger than me.

Thank you, Anonymous, for your comment. We are all connected to one another in this world.  I hope that my answer hasn’t offended you in anyway. I only ask that you continue to send healing thoughts to my son.

From my heart to yours,

Ginger

In the Bible, 1 Peter 3:15 says that Christians should “Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect.”

Cincy Details

Listen to my words, Lord,

consider my lament.

Hear my cry for help,

my King and my God,

for to you I pray.

In the morning, Lord, you hear my voice;

in the morning I lay my requests before you

and wait expectantly.

~Psalms 5:1-3

I have been fervently asking God to open doors for us in Cincinnati. The closer our trip is, the more nervous I feel. We are traveling such a long way to see this doctor. I just don’t want our trip or our efforts to feel in vain. Well, yesterday my prayers were acknowledged! Nurse Julie called from Cincinnati Children’s Hospital and asked if we could change our appointment from 1:00 to 8:45. She said that Dr. Pentiuk had reviewed Stanton’s medical records and thought he would benefit from also seeing the feeding team. This means that Stanton will now be observed and assessed by an entire team of experts who deal with feeding disorders: an Occupational Therapist, a Speech Therapist, a Psychologist, a Dietician, a Physician, an ENT, a Genetics doctor and the Gastroenterologist, Dr. Pentiuk. Nurse Julie said we should plan on spending 3 – 4 hours at the hospital.

Now, I can look forward to our trip! I’m really even excited about it! Today, the nurse practitioner from the feeding team called and spent 45 minutes on the phone with me asking detailed questions and going over everything for our visit. She let me know that the assessment room has a DVD player and that we will have some down time between meeting with team members. We are to bring some things that Stanton will eat or try to eat as well as his Elecare and any bottle and sippy cup he will drink from. She let me know that after each team member has had an opportunity to interact with Stanton and talk to us, they will all meet and come up with recommendations on what to do next. These could include tests, therapy interventions, etc. The nurse practitioner let me know that each person we meet with will be billed separately to insurance and we will need to be prepared to pay multiple co-pays. I just grinned and thanked God over and over for providing for us…..our insurance has pre-approved Cincinnati Children’s Hospital as an “in network” provider!!!!!!

Guess where John’s college roommate lives? In a suburb of Cincinnati! He actually works only a mile or so from the Children’s Hospital! So, we will get to hang out with him and his sweet family over the weekend. I just feel completely overwhelmed and humbled that God has perfectly arranged each and every detail of this process so that things just fall into place for us to go, focus on seeking the best care for Stanton and have a little fun too!

 

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.

Investigating

After such a positive start to September, full of new tasting experiences, it’s been such a letdown to pull the nebulizer out of the closet. Since finding the right balance with his medical formula, Elecare, and medication combination, Buffer Babies, Stanton just hasn’t been sick. Oh we’ve had our fair share of illness…He spent most of his first 20 months in this world sick with 14 ear infections, 9 pneumonias, several upper respiratory infections, a couple of croups, 3 eye infections, and constant chronic diarrhea and vomiting.

This past week was a reminder for John and I that the fight for Stanton’s health is far from over. We’ve been waiting on lab results, waiting on doctors to return from vacation, waiting on the feeding clinic in Atlanta to call, waiting for therapists to confirm that his feeding issues have a medical root vs. a sensory root….I spent the end of week calling and leaving messages for his doctors at Oschners, calling the feeding clinic in Atlanta to see what the holdup is, and researching our next step.

I’m leaning more and more to the idea that before a feeding clinic can really be successful for us, all of Stanton’s medical issues need to be resolved. I’ve met some amazing moms with kids similar to Stanton through on-line discussion boards and through God just doing what He does, connecting me to folks. As I listen to their experiences and hear the cry of each mother’s heart, my cry and fight for Stanton becomes even more clear.

All this time, I’ve googled “reflux” and “feeding disorder” in a search to find help for Stanton. This week I instead searched for “pediatric digestive disorders” and found a wealth of information I had never before come across. I found a list of the top programs: 1) Cincinnati Children’s Hospital, 2) Children’s Hospital Cleveland Clinic, 3) Children’s Hospital Philadelphia, 4) Texas Children’s Hospital, 5) Denver Children’s Hospital. So, I’m going to start at the top of this list and spend some time contacting these top rated programs. My hope is that we can somehow get Stanton in with one of these specialty centers.

endurance

Aspiration Pneumonia.....what a week! 

I've clung to these words and felt I should share them with you.  Because of my faith in Christ, I know His hand is upon us even in the most difficult of days.

Philippians 4:6-9
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.

So I mentioned that the diarrhea began after the pizza...well the severe retching vomiting began Saturday around 2:00. He violently threw-up mos of Saturday and all Saturday night. By 3:00 am the stridor sound started. Stridor is that awful severe wheezy sound one makes when tryig to breath. We pulled the nebulizer out of the closet and started breathing treatments. One treatment every two hours. This did control the stridor and Stanton seemed to have more energy after each treatment.

By Sunday night, Stanton was still really lethargic and had fevor, so we took him to the ER. They did a chest x-Ray and sort of just blew us off. The ER doctor said it was "just a cold" and more than likely viral. Ugh! Why don't doctors listen to parents? Look at my son's history and listen to me! I don't know why the medical world can't seem to make the connection between Stanton eating, then Stanton becoming really sick!

So Monday we took Stanton to our pediatrician who said that the chest x-Ray did show a cloudy area in one lung! She sent us home with ear drops, an antibiotic and steriods....none of which stays down! The pediatrician wanted to give us 24 hours to medicate Stanton. We go back to the doctor today

To date, Stanton still hasn't eaten or taken any formula. We feel successful if we can get 1 oz of liquid in him!