Fervor

Note:  I wrote this post a month ago!  Stanton ended up being admitted and I just haven’t had to post

My poor sweet Stanton has eyes so red and watery he can hardly see; a nose running a marathon and a cough that rattles our windows. It’s 4:30 am and now that the throw up has come and gone and the breathing treatment is over, I’m sitting beside him, anticipating every irregular, labored breath.  He brings his shoulders up as he wheezes to breath in and moans as he breathes out. This moment…all too familiar….all too “normal” for us… simply sucks. 

As we cuddled on the couch this morning, I knew this moment was coming.  His nose had started running and he was constantly rubbing his eyes.  He also refused all food and Elecare (his medical formula) which is a tell-tell sign….watched him carefully study this painting we have hanging in our living room.  

“What are you looking at Stanton?”

“The colors.”

“What about the colors?”

“Blue is a good breath and red is bad.”

“What does a blue breath sound like?” Stanton took a nice, slow, deep breath in and out

“And what does a red breath sound like?” Stanton gasped for air and coughed.

Such wisdom for such a three year old. 

This painting is titled “Fervor” based on Romans 12:11 “Never be lacking in zeal, but keep your spiritual fervor, serving the Lord.”

As I sit here today, in my pjs, with three day unwashed hair, holding a baby and caring for a chronically sick three year old I find myself wondering….do I still have fervor?  Is this painting still what my spirit looks like?  I have to dig deep inside myself – but I’m happy to find it.  Fervor, you are there!  I will use this gift to stay true to our goal = a complete healing for Stanton.

Stanton spent four days in the hospital after this post

Make a Difference

Stanton has been healthy for the last six weeks!  We have made a couple of changes with his medications including adding Claritin , dropping Miralax to every other day and removing Prevacid. The Claritin seems to be working against the runny nose and mucus build up while the Miralax is keeping his system from backing up. Stanton has been on Prevacid since he was 10 weeks old.  The buffer compound that we use to mix it is no longer available, so our pediatrician agreed that now would be a good time to stop and see.  The longer we go between illnesses, the more courageous he becomes with food. I’ve seen a real increase in appetite without Prevacid.  I’ve been astonished as I watch Stanton eat and enjoy macaroni and cheese, carrot soufflé, hotdog, peanut butter, yoo-hoos, cinnamon rolls, pound cake, banana and granola.  In therapy he’s actually licked a variety of foods and textures without much complaint.  We are still holding our breath, waiting on the crash….but so far, we’re really enjoying a healthy Stanton!

The film crew for Abbott nutrition came over on Sunday to meet us and get to know Stanton.  He seemed really comfortable with everybody and spent the afternoon building legos, reading books, crashing blocks and playing space with the crew.   They were all super sweet and really great with him.  Luckily, the day of filming was a nice day and the crew got some great footage of Stanton playing outside being a wild boy.  They spent the afternoon filming us playing, reading, eating mac n’ cheese, being a big brother….it sort of felt like we were on a reality TV show as a camera man just followed us around.  Then it was time for make-up!  The make-up artist airbrushed make-up on and really pampered me.  I don’t usually wear lots of make up, so it was strange….but I must admit – fun.  The crew explained that they wanted us to focus on how Elecare has made a difference in Stanton’s life.  John and I took a trip down memory lane and looked through old pictures remembering that before Elecare, Stanton threw up at least twice an hour.  He spent his days lying around with no energy.  He was super emotional all the time and never felt good.  John and I took turns sleeping in his room as Stanton would wake up several times during the night to throw up.  Once we discovered Elecare, Stanton was already 20 months old.  Within the first few days of introducing this amino acid formula to Stanton, his vomiting decreased SIGNIFICANTLY from an average of 32 times a day down to 3 or 4 times a day. We realize that Elecare changed our lives by giving us a better quality of life.  During our filmed interview, John and I basically focused on this part of our journey.  We realize that Stanton has other issues, and we still don’t have a diagnosis, but we didn’t get into those issues as the point of the filming was about how his nutrition, health and feeding have improved due to this medical formula.

Abbott will use the footage to create a patient testimonial for medical conferences.  They will also put a short 90 second segment together for their website, however, this segment must be approved by the FDA – so who knows when that will be ready for release and what it will look like.  As soon as we have a link – of course I’ll share it with you! 

This is Stanton "on set" as we tested the sound

In the midst of dealing with the film crew, Cincinnati Children’s Hospital called.  They have scheduled Stanton for the week of February 20^th.  In addition to meeting with several specialists, he will also have a swallow study, a CT scan, a feeding evaluation, x-rays, an exploratory surgery/scope and internal biopsies with the otolaryngologist, gastroenterologist, and pulmonologist, a ph probe inserted to measure acid levels and follow up appointments with all the specialists.  It will be an extremely stressful, but hopeful week.  I ask you to all send us positive energy and prayers as we begin to make our travel arrangements and prepare for all the testing.  It is always an emotional time for our family…the anticipation of what’s to come, the hope for answers, the reality of process, our history of no answers, the financial burden.  It’s all part of our fight for Stanton’s continued health.  We do this to ensure that he will grow into who is to become and make a difference in this world. 

What Can You Handle?

“I know God won't give me anything I can't handle. I just wish he didn't trust me so much.”    ~ Mother Teresa

Stanton continues to have a respiratory crash every three weeks.  It's difficult to handle these illnesses so close together and yet so predictable.  We have one week of horror, then two weeks of good.  This time around it's put us in the hospital.  Stanton has pneumonia that he just can't shake.  It seems to be lingering in his lower left lung.  It's sad to admit, but being at the hospital has been a bit of a break.  Here, I'm only mom.  My only job is to comfort my child.  I can focus all my energy and efforts on him and his needs.  This, I can handle.  The nurses and hospital staff take care of everything else....the medication, the breathing treatments, even the food and clean sheets!  I am thankful to be in a place that is comfortable so I can focus on my job...being mom.

The pediatrician on call has witnessed what I deal with on a daily basis:  the fight to get Stanton to take anything by mouth.  One sip of apple juice at a time; the eye dropper of water; the throwing up of forced medications, the refusal of food.  He's really had nothing to eat or drink since Saturday afternoon and is, therefore, IV dependent while here.  Today, however, he's finally reached the bottom of an apple juice box.  It took all day - but he did it! I hope this is the start of a better night and day tomorrow.  We can't go home until he begins drinking and taking his formula (Elecare).

After watching our oral battle, the pediatrician has raised some tough issues for us to consider and pursue.  We first will see a pulminologist at Tulane.  That leads to a series of "What If" scenarios that I'm not ready to share.  The pediatrician wants to talk to our primary pediatrician about making a call to our team in Cincinatti.  The doctor feels it should be a phone conversation, not just a faxing of records.  This again leads to some difficult choices and scenarios that we must face.

Am I ready for this next, difficult journey?  Can I handle what lies ahead?  Why does God trust us enough to push my family down this stoney path? 

 "It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8

Partners in Crime

It’s official.

I know I shouldn’t feel surprised or disappointed….but I am a bit. I’m only human and the momma after all. My educated brain knows that 60% of kids with severe reflux have it, or that’s what all the research I find on-line suggests. I mean, we’re already treating Stanton for it with a daily breathing treatment called Pulmicort. Looking back over the last three years, we’ve treated most of the classic symptoms and flare-ups, however, each doctor, ENT, Immunologist, Allergist, Gastroenterologist, etc. we’ve seen has tip-toed around calling Stanton’s chronic lung/breathing issues what they really are….until today. ASTHMA - today Stanton received a diagnosis of asthma. Asthma and Reflux are truly partners in crime.

Since July 30th we’ve been to the pediatrician three times. On July 30th we went after Stanton crashed. This is what I’ve jokingly describe as his “time of the month.” Every three to three and a half weeks, the bottom just falls out from under Stanton. The mystery dots appear, the refusal of oral intake begins the clear runny nose kicks in, the vomiting eventually explodes and his oxygen levels plummet. On August 10th we went for an ear infection and increased reflux. Today we went for the right on time three week crash.

surviving on Mommy and Daddy's bed

The pediatrician obviously knows our situation and history and understands that getting a prescribed antibiotic down him is impossible. So, poor Stanton received a big shot of rocephin. We have all the inhaled and dissolvable steroids at home…so that’s where we are now, continuing to alternate the breathing treatments between Pulmicort and Xopenex. I’m hoping that Stanton will begin drinking something again by tomorrow so I can hide the dissolvable steroids in his Elecare formula. That’s the only way to get them down without a huge throw-up episode. (He hasn’t had any Elecare since Saturday around lunch).

Once we are over this episode, the pediatrician wants us to increase his daily Pulmicort breathing treatment from once to twice a day and see if that makes a difference. He also suggested we start watching to see if Stanton’s episodes become more frequent now that he is in school. If they do, the pediatrician wants us to seriously consider taking Stanton out of school. He said it’s his either his social development or his health and right now we may not be able to have both. UGH!!!! I thought we had finally arrived at something normal!!!! And Stanton really LOVES his pre-school. We’ve had zero transition issues. So I’m keeping my fingers crossed that it won’t come to this.



A couple of days before Stanton crashed



Connect the Dots

As I dressed Stanton for school this morning, I noticed the dots. They’re back! All over his torso, sides and slowly spreading to his back. I looked at the calendar and guess what? It’s been three and a half weeks since the last dots occurrence. It really is every three weeks or so. He was super irritable and weepy this morning. However, he wanted to go to school. With no other symptoms, I took him.

Stanton was excited when he walked into the school. He ran right in his classroom and hung up his backpack! When I picked him up he looked tired, but was still all smiles. He even gave every child a hug before leaving. His teacher said he had a good day. When I got him in the car I looked and noticed out of the 10 ounces of formula I sent, he only drank 2. No wonder he seemed tired and lethargic…..I thought. So, he drank another 2 ounces in the car on the way to speech therapy. At therapy he began complaining that his ear and head hurt. Sure enough, his left ear is draining.

As soon as we got home he sat down at our kitchen island and started profusely vomiting…..everywhere. Once I calmed him down, got his wet clothes off, sponge bathed him and settled him down on the couch in just a diaper, he fell asleep. Thankfully his draining ear was facing up, so I dug around in his cabinet and found some left over antibiotic single dose ear drops and gave him dose. I haven’t decided if I’ll take him to the pediatrician or not. I guess I’ll see how the rest of the afternoon goes and if need be, take him in the morning.

It’s only his second day of school. Looks like he’ll miss day three. Bummer!

I wish someone, somewhere, would connect the “dots.” I feel strongly they represent something more going on inside his little body…hmmmm….

Happiness is a Happy Gut

The need for breathing treatments finally came to an end on Sunday! It’s a relief to see Stanton breathing naturally and comfortably after his latest battle with pneumonia. 2011 has been a year full of upper respiratory issues and pneumonias for our little man. With each one, I’ve noticed that about a week after starting antibiotics, he breaks out in a rash. The rash begins around his ears and stretches down to his upper chest. Just tiny small red raised dots. With each episode, I’ve come up several possible reasons for the rash: playing in the grass; wearing a hand-me-down shirt that I’m not sure I washed; soap from his bath; etc. The last time I noticed the rash, about two weeks ago, I took him into the pediatrician and she agreed it looked like an allergic reaction to the antibiotic. With this latest illness, she put him on a different antibiotic, a non-penicillin version, called omnicef. Stanton broke out in the rash on Monday morning. This time around I finally think I’ve uncovered the mystery! Each time he is sick, he is on a combination of antibiotics, steroids and breathing treatments. Usually the steroids are only given for five days, the breathing treatments for seven or eight days, and the antibiotic is for ten days. The rash appears on or around day six…exactly 24-hours after his last steroid dose…..steroids are sometimes given to suppress allergic reactions. So, Stanton’s pattern fits! His reaction to the antibiotic is suppressed by the steroid, then surfaces once the steroid is out of his system! I must confess, I feel like a really slow Sherlock Holmes. I called and left a message for our pediatrician with this information, and am curious to see if she agrees with my “scientific” observation. I stopped giving him the antibiotic on Monday, but, as of today, Stanton’s rash has crept up his neck and around his chin. The spots on his chin seem to be a bit more splotchy. So – today I’m continuing my experiment. I gave Stanton a left over dose of steroid this morning. I hope the rash is gone by this afternoon….but if not, I’ll call the pediatrician and make an appointment. It’s nice that everyone at her office knows us by name, but I also understand that this means we frequent her business way too much!

Another unfortunate side effect of omnicef for Stanton has been his stomach. The possible side effects list that it could make your bowel movements red and more frequent. Poor Stanton reacted exactly that way! So, on Monday, when I stopped the antibiotic, I didn’t think to put him back on Miralax (his usual daily regimen). I felt that his stomach could use some time to recover. This decision completely backfired on me Tuesday. We went to our Kindermusik class and I noticed him withdraw from the group and flap. He only flaps like this when he’s about to throw-up or when he’s constipated. Since he wasn’t moaning or crying with the flapping, I guessed he was constipated and made a mental note to give him Miralax when we got home. After Kindermusik, we go straight to speech therapy. We made it into the waiting area, talked to everyone and read a book. As soon as Stanton stood up to put the book back, he started screaming. The kind of scream you hear when a child falls off the monkey bars…that I’m really hurt and something is broken cry. His face became as red as I’ve ever seen it as he doubled over and grabbed his knees. His face started sweating as he screamed and gasped for air. I got on my knees and told him to hold on to my shoulders and squeeze. He clung to me, unable to stand up straight and screamed. This went on for about ten or twelve minutes. All the staff and therapist kept coming out to make sure we were okay, shocked to see him doubled over in pain. A speech therapist brought us a wet washcloth and sat with us on the floor as I tried to just hold him and comfort him the best I could. The sweet office manager, who Stanton is always flirting with, started crying along with Stanton saying she wished she could do something for him. Stanton has been like this before – always when he’s severely constipated, and usually in the privacy of our own home, which just hasn’t happed in a long time thanks to Miralax. He finally calmed down enough for me to carry him to the car as a therapy student carried our stuff for us. I let him continue to push and squeeze me at the car until finally he pushed out a hard golf-ball size rock. Immediately he was happy and better! I changed him and got him home and yes, got a dose of Miralax down him.

So many times we’re told to follow our “gut” instinct or “go with our gut.” In Stanton I clearly see the emotional connection the gut obviously has with our body and mind. When his tummy is happy, he is happy…and so am I.

 Ginger

Patterns

Four days after completing our last round of steriods and antiobiotics.....we're back on! Thank goodness both come grape flavored and I can semi-hide them in his formula. I just hope we all get some sleep and Stanton's nasty chest cough is cleared up before Tuesday. We fly to Cincinnati on Tuesday for a few days of testing at the Children's Hospital. Stanton has only been sick about 4 times since we were last in Cincinnati (November):


1. Thanksgiving - ate 3/4 of a scrambled egg then became congested and went downhill quickly that day. This episode required breathing treatments and steroid shots.
2. January 6 – ate for the behavior psychologist. Vomiting began about 4 hours later
3. January 21 – ate at Piccadilly. Had about 2 spoonfuls of corn, half my portion of carrot soufflé and 4 bites of jello. Became very congested that night and vomiting began the following day. This turned into aspiration pneumonia.
4. February 8 – ate well at speech therapy. Vomiting began three hours later. Wheezing began the following day. Back on steroids.
Does anyone else see a pattern here? Each serious illness begins with EATING. Stanton has the desire to try and taste and eat…then he severely pays for this choice. I’m looking forward to sharing this information with the team in Cincinnati. Maybe a light bulb will turn on in one of their minds…

We will meet with an allergist who works on the aero-digestive disorders team and Stanton will undergo full allergy testing. We'll meet with a geneticist who also works on the team and she will review all the testing we've done thus far. I'm hoping she gives us some good insight about our most recent metabolic results. Stanton is then scheduled to undergo a nuclear medicine test for delayed gastric emptying. We'll wrap everything up by meeting with the gastroenterologist and feeding team again.

I'm looking forward to the trip, although it will be tough on Stanton. I just hope it brings us one step closer (okay, maybe like five steps closer) to an answer!

Happy Valentine's Day!



There are so many things to update!  I'm sorry it's been a couple of weeks since my last post. We've been swimming in paperwork trying to follow up with the genetic recommendations.  Stanton's latest genetic lab work showed abnormalities in his plasma, carnatine, enzyme, organic acids and fatty acid levels.  The report suggested we see someone who specializes in metabolic disorders.  The referral to the bio-metabolic genetic clinic at Tulane University was finally sent over yesterday.  After calling and calling and getting no where, John faxed all 41 pages of the genetic report to our pediatrician.  That seemed to get the office's attention!  Tulane is to call us for the appointment.....so we're just waiting.
 
Stanton finished his round of antibiotics this past Sunday after aspirated a couple of weeks ago.  And now is sick again!  However, this latest episode didn't end up in his lungs....thank goodness.  He just looks like he has really bad sinus/allergy gunk.  His eyes are bloodshot, puffy and watery; his nose is constantly running clear and he's sneezing and coughing his head off.  He's pretty miserable.  I took him to the doctor this morning just to be sure all was okay - and she said to just give him Zyrtec. 

We leave next week for Cincinnati Children's Hospital for a week full of tests.  I hope Stanton is in better health before we board the plane!  I'm also hopeful for some real treatment options.  We've been giving Stanton the medication for delayed gastric emptying and I just can't say I've seen a real difference.  Thank you all so much for your encouragement and prayers as we continue down this winding road!
~Ginger

Evaluations and Tests and Results, Oh My!

The last two weeks have been very full! Stanton and I toured the Children’s Center. This is a school for children with developmental delays in Hattiesburg. It sits on the campus of the University of Southern Mississippi. Our behavior psychologist works here a couple days a week and she connected us to the center. It’s beautiful and filled with amazing therapists and families. Stanton apparently felt right at home as he independently charged off down the hallway peeking in windows and doors. He announced that he wanted to go to school! In order for Stanton to attend this special school, he must be released from our local school district. This is where it could get sticky.

Last Friday I took Stanton to his public school eligibility evaluation. This is a standard process for kids who are receiving early intervention services as early intervention stops at age three and the public school picks up services at age three. Stanton qualifies for special education as he showed delays in motor skills, self-help skills and articulation. However, he tested very high in cognitive skills and vocabulary! Very proud of this accomplishment. Once the official evaluation is all typed up, we will be called to meet for an IEP (Individual Education Plan). The IEP sets goals and expectations for the school year. I think this is where the Children’s Center enters the picture as a placement option….but I’m really not clear about this yet.

Stanton also had a swallow study. We’ve been practicing for this for a good two months! Our sweet speech therapist has even taken Stanton over to radiology and let him look around and get comfortable with all the computers and equipment. He did GREAT! He sat in a chair all by himself and licked all the foods offered with Barium mixed on them. It really was just perfect. And – his swallow is normal. He has a slight hesitation with solids, but the therapist feels this is more a developmental delay than a swallowing issue.

Last Saturday night, Stanton had a pretty bad reflux episode and aspirated. So, this week we’ve been dealing with that fall out. His whole little body just shuts down. So, he’s back on mega doses of antibiotics and steroids. Thank goodness for grape flavored medication and dissolvable steroids!

Today our geneticists personally called. When I realized it was the doctor himself, I became immediately nervous. I’m learning that if it’s nothing serious, a nurse calls to relay the information…but if the doctor calls – it means something is up. Dr. Martinez explained that Stanton’s genetic lab work drawn in December returned abnormal again; both his urine samples and his blood work. The abnormalities appear in metabolic areas including fatty acids, organic acids and carnitine levels. He said that he would like for us to see a metabolic geneticists as they specialize in metabolic genetic disorders. He feels that Stanton fits the profile, but metabolic disorders are outside of his area of expertise. Because it’s Friday, the referral and process will begin next week.

One side of my brain is thrilled and excited to have a possible answer – hope for treatment and a real diagnosis. The other side of my brain knows that this could change everything and a metabolic disorder is not something one outgrows. My mother’s heart is deeply torn; full of questions; grieving the unknown; contemplating what future a possible metabolic disorder diagnosis holds for her son. Jeremiah 29:11 promises God’s plan for a future and for now, I must cling to that promise.



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

It Starts With a Kiss

I still am not completely sure how to put this post into words....but here I go...

Stanton ate a dark chocolate Hershey Kiss on Sunday... and on Monday....and on Tuesday....
Okay - so not today, but there are so many tiny surprises intertwined in this victory:

• He hasn't thrown-up since last week - chocolate is staying down
• He requested "more chocolate" 
• I had to tell my non-eating child that he couldn't eat anymore (after 4 pieces)
• He chewed and swallowed each piece without gagging or drama
• He told me this morning that chocolate makes his tummy happy

Chocolate in his tummy makes me happy too - so happy that I can't stop tearing up just thinking about it!

Here's proof:

In the Still of the Night

“Mommmmmmmyyyyyyy” cries out over the monitor at 9:47 pm. I grab a towel and rush into Stanton’s room sensitive to the turmoil he is struggling against inside his belly. My mind immediately runs down the checklist: all doses of medicine today? check; foods today? oh yes – how could I forget the five macaroni noodles I was thrilled he swallowed at 4:30. Mystery solved…


… I spread the towel on the floor, pick him up and sit him on my lap. We wait for the wave of vomit to overtake us. Once the heaving begins, I know this is a just a sample of what the night holds. I steady my mind and center my breathing hoping that the simple rhythm of my body can be of comfort to him. Equally covered in slimy vomit, I slowly take off his pajamas and do my best to wipe him down. He won’t let go of me, making this a most complicated task in the dark. I then take off my covered shirt and put a clean towel between us.

We sit, rock and catch our breath, both fully aware we’ll do this dance again in a few hours.

Feeding Clinic

Paperwork….
…..is endless when you have a child with medical issues. I’ve spent the last few weeks completing the 23 page intake forms for the Marcus Institute Pediatric Feeding Disorders Clinic in Atlanta, Georgia. I’ve also called our whole team of various doctors and specialists to request medical records for the feeding clinic…which entails filling out several medical release forms and faxing forms back and forth. The good news is that the clinic has already called to verify the referral and go over a few more questions. I am now just waiting to hear back from the clinic. They should call with an evaluation/interview date soon.

So – what is a feeding clinic and is this really the best road to travel for Stanton?

the great debate....to try or not to try

The Marcus Institute is one of only a handful of pediatric feeding disorders programs in the country. I like the Marcus Institute as it is the closest program to us, it incorporates a true interdisciplinary approach and, since we lived in Atlanta for over ten years, I have a support system there and know the area. The Marcus Institute’s website states they have an 84% success rate in increasing a child’s willingness to accept and swallow bites quickly. They also promote that upon completion of the program, bottle feedings are reduced to only 47% of a child’s daily calories. Good results, right?

Some days, I really think we’re dealing with a feeding disorder and am so eager to get started with the feeding clinic. Most other days, I’m not so confident. Stanton does have his moments of curiosity with food……but those moments continue to consistently end in disaster. Just this past week we went to the mall and ended up at Piccadilly. I got a veggie plate and once seated, Stanton said “yummy, yummy corn, eat.” So I made him a small plate including about 10 corn kernels and a spoon full of carrot soufflé. He ate most of the corn and all of the soufflé and asked for more, so I excitedly gave him another spoon full of both. For Stanton, an entire teaspoon full of anything is what I now define as “a really great eating day.” We spent the entire rest of the weekend dealing with chronic diarrhea, battling a yeast infection diaper rash and creating a whole Pixar short film of our own just to encourage him to drink something.

Then again yesterday, Stanton seemed to enjoy licking the chocolate icing off of a donut and tasted a morsel or two of John’s chocolate birthday cake. By 8:45 pm he was up screaming. By 9:00 pm I was completely covered in a bucketful of vomit. All I know to do in a moment all too familiar for us, is to strip off all the clothing covered in the aftermath and hold Stanton close. I hum and rock and comfort him until he eventually falls asleep. Last night, John took over the rocking and comforting so I could take a shower.

Thank you my love! John and I truly are a team as we attempt to maintain some sense of sanity in the midst of such sudden chaos.

So for today, I am again rethinking the pursuit of a feeding clinic.

No Food Allergies

We spent most of Wednesday with doctors at Ochsner’s. First we saw the Allergist/Immunologist. He reviewed all of Stanton’s results from our recent blood work and testing. The immunology report found that Stanton has NO elevated levels of eosinophils in his bloodstream. This completely rules out the possibility of Eosinophilic Esophagitis. This is great news for Stanton and gives us hope that maybe one day he will be able to enjoy food! The only area of concern from an immunological standpoint is that Stanton has very low strep and pneumonia fighters. The doctor wrote us a prescription for an extra vaccine as Stanton is a “partial responder” to the Prevnar vaccine that all babies receive. Stanton does have a history of several pneumonias and chronic upper respiratory and ear infections, but they’ve always trailed behind severe vomiting episodes. I haven’t really decided what I think about that yet.
Basically, the allergy tests reveal that Stanton isn’t allergic to anything. The doctor explained that many people are “intolerant” to a food and unfortunately there isn’t a test for that. The doctor said that obviously Stanton is reacting to foods and we should just keep trying the elimination diet and documenting his responses to food. He went on to suggest that because Stanton will sometimes eat, then not get sick for a few hours, it could be a motility issue, and that is something to discuss and explore with the gastroenterologist.

We then meet Ms. Jan and her boys for lunch at Piccadilly. There is one just a few blocks from the hospital. Stanton really enjoyed listening to the boys talk about the new Toy Story 3 movie! I ordered some corn for him and he happily played with the corn and spoon and maybe ate a few bites. The corn was cooked in butter . Stanton has always quickly reacted to dairy products – usually via chronic diarrhea. Well, this time, he developed a whelp style rash on his right check…the same check Stanton covered with corn juices as he attempted to use a spoon. Of course – we’d just left the allergist appointment. Why, oh why, couldn’t the allergist see this bright red growing rash!

Well, our next stop was with Dr. Serrano, the GI (gastroenterologist) and she pointed the rash out right away. I explained that it had just developed since enjoying corn at Piccadilly. She said, “Was it cooked in butter?” I admitted it must have been. Dr. Serrano said it looked like a definite dairy reaction. She said she had reviewed the results of all the blood work and understood that although Stanton isn’t allergic to anything on paper – we knew and could document specific reactions to foods. Yeah, I thought, just look at his face! We discussed many, many topics – too much to really to list. The main deciding points at this visit included sticking to the elimination diet, introducing a new medication, and getting a second opinion about feeding clinics.

Dr. Serrano knows a GI who helped start an inpatient feeding disorders clinic at the University of Pennsylvania. She asked if she could call him and see if he thought Stanton would be a good candidate for this type of clinic. Dr. Serrano said she has only sent children who are failure to thrive and on feeding tubes to these type clinics. But, she feels, as do I, that because Stanton is now beginning to show some behavior issues related to food and feeding, and because he is bottle dependent, a clinic stay could be the thing that saves us from a feeding tube. She said to think of it as “preventative care.” Although he has some medical issues and a restricted diet, an intensive treatment program, could jump start Stanton and get him to a more age appropriate place. I am open and ready for this as I see him falling further and further behind his peers.   There are only ten inpatient pediatric feeding clinics in the United States.  I've just looked at a few so far:  Pennsylvania, Maryland, New Jersey and Georgia.

Stanton’s new medication is to increase the speed of his body’s digestion. The allergist and Dr. Serrano feel that his 2-3 hour vomiting delay after eating could imply that Stanton has delayed gastric emptying (also called “motility”). The GI said that rather than doing more tests and scans, let’s just try the medication and see how it goes. Well, this morning was my first attempt at getting the medication down. What a nightmare! Three outfits later, and we still maybe got ½ ml in him. And I’m supposed to give this to him three times a day!!!!!! That’s just craptastic! Stanton cried, screamed, vomited and flat out refused the medication. I then attempted to hide it in his juice – failed attempt number two! I even hid it in a small amount of Coke and he still wouldn’t drink it – failed attempt number three. I then took it along to our occupational therapy session – failed attempt number four. I don’t know what my next strategy will be. I’d love some ideas.

So, what does the “elimination diet” mean for Stanton? We have been given a green light to introduce one food group a week. The doctor recommended that we start slow and with “safer” foods as you would with a baby….. starches….. fruits… vegetables. So, this week we are trying fruits. Stanton has enjoyed diced peach cups in the past and loves apple juice, so I figured that was a safe place to start. I am to closely monitor and right down any changes in bowel movements, vomiting and skin rashes. Stanton licked a piece of watermelon this morning, grinned and said “yummy, eat.” Then he leaned in for his second lick, only to be surprised by the eruption of his ever present dormant volcano. After I cleaned him up I was astounded to see him reaching for the watermelon again. Again, he said “yummy.” I fought back tears and said, “yes, it’s yummy.” 

Going on a Bike Ride

For those of you parenting a child who pukes anytime, anywhere....you know how incredible the moment captured in this photo is! It is extremely difficult to just go out and play, much less go on a bike ride. However, our new Wee Ride bike seat is a great new toy!!!! I love that it sits on the front of the bike!

The Wee Ride website advertises that having the child sit in front of you helps with balance and control, gives the child a more interesting view, allows for a more enjoyable riding experience, enhances safety because the adult’s arms surround the child, etc., etc. Well – My two selling points plug for this seat would be as follows:
1. If your child decides to puke while riding, it won’t end up on you!
2. Finally a way to lose that baby weight (little ones who randomly throw-up aren’t welcome in a gym daycare)

P.S. - We’ve been riding now for about 3 weeks and Stanton has yet to puke while on the bike. He LOVES it and so do I.

Our ENT Rocks

We just returned from our post-scope follow up visit with our new ENT at Ochsner’s in New Orleans. In April, Stanton had a bronchoscopy in combination with our last esophageal and upper GI scope. Why did we end up needing a bronchoscopy? In January, Stanton had tons of constant congestion and 2 episodes of pneumonia. So, in February, after battling our ex-ENT to please just look at Stanton’ s throat, our pediatrician ordered a soft tissue x-ray of his face and neck. We were thinking his adenoids might be inflamed and/or large and may need to come out, however, the x-ray showed no issues with his adenoids or tonsils. Instead, we were alarmed to find that Stanton displayed a severe narrowing of his airway. Once our pediatrician saw how small Stanton’s airway was, we were sent directly to an ENT/airway specialist at Ochsner’s and the ENT, in turn, scheduled this bronchoscopy. This procedure allows the ENT to look at the airway system. Through the bronchoscope, they evaluated Stanton’s respiratory system, including his voice box, wind pipe, and airways for any abnormality or infection.

We learned they day of the scopes that his airway had returned to normal size and no abnormalities or infections were found. This was great news! But – I had to wonder, what does this mean?

The visit was a really good one! The ENT completely congratulated us for being aggressive and starting the elemental diet before the scope (switching Stanton to the special new formula, Elecare). He credits this with Stanton’s airway healing. No food = no reaction.

I brought my gag/vomit/poop/food journal along to the visit so I could show the doctor our one attempt at introducing food/episode since the clear scope. We introduced eggs and that was a complete nightmare! Stanton, of course, loved the scrambled egg and ate almost half of the egg! John and I were amazed, as we watched a child who shows no interest in food or eating, actually seem to enjoy the egg. Well, two hours after eating the delicious eggs, the screaming, retching, gagging began and was quickly followed by uncontrollable vomiting. Poor Stanton vomited profusely for 3 full days and nights. He aspirated while vomiting and we ended up with fluid in the lungs, swollen throat, etc., etc. Not a fun way to spend the week – steroids, breathing treatments, etc. He ended up with this rash on his face, which our pediatrician said was from vomiting so much.

The ENT said the egg episode clearly verifies Stanton’s diagnosis of Eosinophilic Esophagitis (EE) and we should wait 6 weeks before introducing another food. Ugh. The waiting is the worst! Then again, the trauma that spews after trying food is pretty awful too.

The ENT said he’s amazed that Stanton is maintaining his weight and looks so healthy! We hear that with every new doctor we meet. They see his extensive records and notes and surgeries and expect to see a pale, lethargic child. I suppose having severe EE, feeding aversions and swallowing issues are all serious issues that could indeed produce a unhealthy looking little one. We work so hard at keeping Stanton healthy. This is no easy task….but we’ve made it our mission.