Slow and Steady

I spoke with the team in Cincinnati and they still don’t have the results of his cilia lab work. We are also still waiting to hear about our referral to the GI team in New Orleans. Locally we have been asked to participate in a newly developing asthma clinic with Memorial Hospital. I said sure and set up our first appointment in two weeks. 

Stanton is slowly beginning to eat.  It is a slow, arduous process….but with tons of encouragement, he is sustaining his weight finally!  Stanton continues to refuse his Elecare, no matter the container.  He is, however, now drinking about 5 ounces of chocolate milk in the morning and at night.  So, I’m hiding a scoop of Elecare and his medicines in the chocolate milk.  At least he’s getting a little! 

In speech therapy our therapist is working diligently at food chaining french fries. 

This has gone surprisingly well.  We started with fast food fries, then introduced varieties of fries, adding a new one each week.   

  

The plan is to progress to steak fries, then a potato and eventually mashed potatoes, etc. 

At home we’ve taken this concept with hot dogs and Stanton is now eating a sliced hot dog and a half of a corn-dog!  This is huge for a child who used to never put anything in his mouth!  We are thrilled with his brave spirit and pray this slow, but steady progress will continue.

Catch Up

I have so much to say and such little time these days!  I do apologize for this way overdue post.  So many of you have asked about our trip to Cincinnati and our recent hospitalizations. Thank you for your kind words, prayers and positive thoughts.  It’s been a tough start to 2012, but we are paddling along, taking things in stride as they come. 

Just to put things in perspective:    Our sweet baby girl is now six months old.  Stanton has been in the hospital four times since becoming a big brother!  We spend the weeks in between hospital stays recovering, rebounding, playing catch up and trying to restart some resemblance to a normal routine, only to find ourselves intertwined in chaos all over again.

Stanton was hospitalized the first of February with a severe asthma attack which lead to an upper respiratory infection.  Two weeks later we traveled to Cincinnati for our week of testing at the Children’s Hospital.  Stanton saw various members of their top rated aero-digestive team including pulmonology, ENT, gastroenterology and the feeding team.  Our first appointment was a video swallow study.  This involved Stanton eating a variety of things mixed with barium while being videoed and x-rayed.  This is super complicated for a child who doesn’t eat much and is super picky about what he will eat.  If it’s the wrong color or texture – it’s not going in his mouth.  Mixing foods with barium changes both the color and the texture…so it was an interesting experience to say the least.  I was able to get him to eat some pudding and some peanut butter.  It was enough to show his swallow and the test verified all was normal – good news!   We spent the rest of the afternoon registering for all the various procedures to come. 

Stanton had a sedated CT scan of his respiratory system the following morning.  That same afternoon we met with the pulmonologist and reviewed the CT scan and his history of serious respiratory illness.  The pulmonologist said his symptoms and hospital stays didn’t match the CT scan.  The scan didn’t show much damage to the lungs or bronchs, only a bit of scar tissue which did prove his continued chronic episodes….but didn’t explain them.  

The next morning we checked into the hospital for the aero-digestive team scope.  The ENT, pulmonologist and gastroenterologist all preformed the scope together, each looking at their area of the body.  Anatomically, everything looks normal and is functioning as it should.  Biopsies were taken and we are still waiting for some of those results. The ENT said Stanton’s throat is functioning well.  He did remove Stanton’s ear tubes as they have been in for two and half years.  The pulmonologist discovered that Stanton’s cilia in his upper airway were stiff and unresponsive during the scope.  He took a biopsy and sent them to the hospital’s in house lab where they remained unresponsive.  So Stanton’s cilia have been sent to a lab overseas for further testing. We still don’t have those results. 

The gastroenterologist also took some biopsies of his esophagus and stomach.  He then inserted an impedance probe which Stanton kept for the next 20 hours.  The impedance probe is a small tube that goes up the nose and is threaded down into the esophagus.  It’s attached to a small computer box that Stanton had to “wear” on his shoulder (like a purse). The probe records changes in flow within the esophagus, the pH of the esophagus and other common reflux symptoms.  It also shows how far the reflux goes.  While Stanton had the probe I had to push a button on the computer box if he coughed, burped, gagged or threw up.  I also had to push a button when he was eating/drinking.  Stanton’s impedance probe showed that he refluxed 68 times and 54 of those times reached his throat.  This just showed us that he still has very active, severe reflux.  Even though he hasn’t vomited since November, he is still dealing with this disease.  So, the gastroenterologist put him back on prevacid. 

After we checked out of the hospital we met with the feeding team.  They pointed out that the list of foods Stanton will try is three times as long as it was this time last year.  We all understand that he is being sustained by his medical formula, Elecare and food is still experimental for him.  However, his weight was good so they encouraged us to try some tough love as Stanton will only drink his formula out of a baby bottle.  Part one of the tough love is the suggestion of putting an NG feeding tube through his nose the next time is hospitalized and on a feeding strike.  He hated the impedance probe down his nose due to the tape on his face….so the feeding team thought that might be a wake-up call for him.  Stanton will drink other things from cups and straws, but not his formula, so the team suggested we begin offering his formula in a cup just to see what would happen.  They also encouraged us to find a local feeding team and GI.  They suggested we look at the various options in New Orleans.  After comparing the pediatric programs in New Orleans, we’ve decided to try the New Orleans Children’s Hospital.  They have a feeding team with a strong reputation.  My pediatrician is in the process of setting up a referral to one of their gastroenterologists.    

Since we’ve been home Stanton has been in the hospital again…but it was a short stay so the doctors here did not do the NG feeding tube.  We have started fading out bottles and of course Stanton refuses to drink his Elecare now!  Initially I was offering the cup of formula and as soon as it was refused, I’d give it to him in a bottle.  I faded this out as time went on with no progress.  I realized that as long as the bottle was an option, that would be his only option.  His bottles are old and all starting to leak and drip.  This has been a source of frustration for Stanton. So, I told him that if a bottle was drippy, we’d just throw it away because it was old and not good anymore.  We have thrown away all but about three bottles, which I’ve hid so that his only option is now a sippy cup or cup with a straw.  Fast-forward to today…..this has totally backfired on us!  He is completely refusing the formula in a cup.  Stanton got really sick this past weekend and ended up back in the hospital so I gave in and dug out a bottle.  He promptly stated that bottles are for babies and he is not a baby.  Ugh….so now he won’t even drink it in a bottle anymore either!  Elecare has 30 calories per ounce and Stanton was drinking about 32-36 ounces per day.  This means that his intake is down an average of 900 calories per day now and he isn’t really replacing them with anything substantial.  He has re-lost all the weight he just regained!  I’m feeling frustrated and worried. I find myself spending my whole day trying to get him to eat and drink.  It’s completely exhausting and beginning to feel like a no win situation.  I appreciate all of your thoughts and support as we continue down this unanswered path.

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. 

Featured

I'm so excited!  I just got off the phone with a representative for Elecare.  This is the medical formula Stanton has been on since he was 20 months old.  They ran across my blog and would like to feature Stanton's story on their website!  So, a film crew, make-up artist and interview person will all come and film our family this Sunday and Monday!  It's so exciting and a bit crazy.  I hope Stanton cooperates and that we can appear calm and natural.  Once the segment is done, I'll be sure to announce it here!

Cincinnati Children's Hospital also called today and said the earliest they can schedule Stanton is the end of February.  I said that was fine, so we should have definite travel plans soon. 

The new year is up and running....I do look forward to answers coming this year!

Hope

It’s been a busy couple of weeks meeting with doctors, gathering records and keeping Stanton healthy!  We have temporarily withdrawn Stanton from school as we are trying everything we can to keep him from getting sick and losing more weight.  So, each morning we have “school” at home.  His school sent me a packet of worksheets, so each morning we complete one or two of those.  His “handwriting” is really improving!  This week he traced two long, straight lines without any help!  I was thrilled to see that kind of progress.  Stanton also seems proud of his work and like to save it and show Daddy when he gets home from work.

We saw the pulmonologist, Dr. Scott Davis, at Tulane a couple of weeks ago and he was really great!  He spent about two hours with us, examining Stanton, asking lots of questions, gathering information and reviewing Stanton’s history.  Stanton’s lungs sounded clear so Dr. Davis sent us down to radiology for a chest x-ray.  He wanted to establish a “baseline” of what Stanton’s lungs look like on a good health day.   After the x-ray we went back to his office and waited.  Dr. Davis showed us the films and pointed out some areas of inflammation and noted concern.  He has requested all of Stanton’s past x-rays so he can compare before jumping to any conclusions.  Dr. Davis said that Cincinnati Children’s is the best, rated number one in pulmonology, with one of the few in house pediatric “Aero-Digestive” centers in the United States. He is happy to partner with them and be our “local” pulmonologist.  I really am so thankful to have a local specialist on board with our Cincinnati team!

As I was shopping for stocking stuffers at Target on Friday, Cincinnati Children’s hospital called.  Stanton has been accepted to the Aero-Digestive program!  The team accepted Stanton about 2 weeks ago, but the gastroenterologist and nurse practitioner took some time to call and speak with our pediatrician and other local doctors who saw Stanton in the hospital over Thanksgiving.  They represented his case to the team this past Wednesday, with the extra details they gathered, and the team flagged Stanton as an URGENT patient.  The team’s earliest opening isn’t until the first of April, but because they consider Stanton urgent, they have bumped him to the top of the scheduling list.  I’m not really sure what that means, but I have a feeling we’ll be going at the end of January or early February…but can’t say for sure.   Someone from scheduling should call before Christmas to let us know when we are to come. 

This whole process is a roller coaster of emotions….I’m beyond excited to know that our son will be seen by some of the best specialists in the country. It is a bit heartbreaking to know I have a child who needs the best and has been labeled URGENT. It’s a relief to have access to the best! The six days of testing and exploratory surgeries will be nerve racking.   All the “what if’s” are playing through my mind. I am hopeful for answers…at least a better plan of action.  I feel vulnerable opening myself up to hope – but without hope, there is no fuel for our continued fight for Stanton’s health.  Romans 12:12 reminds me to “Rejoice in hope, be patient in tribulation, be constant in prayer.” Such simple instructions, yet, such a challenge on a daily basis!  I think this will be my new mantra for the upcoming new year.

Circumstances

I’m sitting in the waiting area while Stanton is in speech therapy today.  As I watch the variety of folks come and go, I realize that I have so much to be thankful for.  Although I have a chronically sick little man, with a future that is cloudy and unknown, he is so precious.  I do see God’s perfect love reflected on his face. He is silly and witty.  He talks up a storm about everything, especially warning signs.  He loves robots, rocket ships, airplanes, letters and dump trucks.  He is so acutely aware of the world around him and takes absolute joy in investigating his surroundings.  

I spend most of my time investigating options for his treatment plan.  Over the past six months and in the hospital, Stanton has lost lots of weight…so much that he is now in need of a feeding tube.  We are playing the waiting game to see the various specialists it takes to move forward with this surgery.  I called our team at Cincinnati Children’s Hospital and Stanton’s case will be presented to the Aero-digestive Team on Wednesday.  The nurse should call after the team comes up with a plan of action for us.  This does mean we will soon be back in Cincinnati for tests, procedures, meetings and possible surgeries.  I am hopeful that we will connect with a “local” team that will be willing to partner with Cincinnati – but so far that just hasn’t happened.  

On Thursday we will see a pulmonologist at Tulane.  I’m really curious about this appointment and what will come of it.  I will post our new plan of action after our Tulane appointment and once I hear back from Cincinnati.  Until then – our family really appreciate your prayers, thoughts, and positive vibes for Stanton!

“Circumstances may cause interruptions and delays, but never lose sight of your goal. Prepare yourself in every way you can by increasing your knowledge and adding to your experience, so that you can make the most of opportunity when it occurs.”  Mario Andretti

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

What's new?

I know, I know….my past few posts about Stanton’s health have been the same story!  We continue to face the same issues – nothing health wise has really changed.  He’s loving school and really loves being a big brother to his 5 week old baby sister!  It’s been interesting trying to balance his health with a newborn baby girl!  So many have asked what’s next?  Where we will push next; what doctor we will visit.  I am just recovering from having a baby….and am not ready to travel with one so little and the other chronically sick.  I do have some ideas of where I’d like to push and investigate next, I’m just waiting for baby girl to have some vaccines and for us to get through the holidays.

Stanton awoke on Halloween morning with a terrible cough.  He spent the entire day sounding like an old man; coughing and sputtering.  I gave him extra breathing treatments trying to keep him going so we wouldn’t miss trick-or-treating.  That night we made it to my sister’s for a party and trick-or-treating.  Stanton made it to about six houses before needing to sit in his stroller.  I literally had to talk him into knocking on two more doors before we decided to call it a night.  He had fun while it lasted, which wasn’t very long.  When he has a respiratory flare up, the wind is truly knocked out of him and he simply has zero endurance.

As a mother, my heart is broken for my son.  I realize he doesn’t know things should be any different, as they’ve been this way for his whole life.  I acknowledge that I am in the midst of grieving this reality.  I wish he knew what it felt like to really feel good.  I’m not sure he’s ever had a day where he felt “normal” inside.  If it’s not his cough and difficulty breathing, it’s a pain in his stomach.  If it’s not his stomach, it’s a reflux kind of day.  If it’s not reflux, it’s constipation.  If it’s not constipation, it’s a day of blow-outs.  If it’s not a day of blow-outs it’s a day of low energy. If it’s not a day of low energy, it’s a day of unexplained hives.  If it’s not hives, it’s a hunger strike kind of day.  And so on…    

I used to pray and hope for healing, but now I find myself asking simply for today.  I pray that today Stanton will have a good health day.  I pray that today, maybe a doctor or new idea will present itself.  I pray for energy to continue aggressively fighting this battle.  It’s hard to look past today, for in the past when I have, I’ve just ended up disappointed or with more questions.  So, to survive all of this with some sanity, I have learned to take things one day at a time.  As I’m typing this, I realize it sounds depressing…..which I’m not!  This letting go has  really allowed me to enjoy just being in the moment, which has been so freeing for me! Before Stanton I was a planner and very “type A.”  He sure has taught me to really let go, go with the flow and be flexible!

Speaking of being flexible – he’s awake from his nap, crying and gagging…I’ll post more when I can!

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….

The Reality of a "Vacation"

In December, 2009, we planned and booked a vacation to Disney World in Orlando, Florida for June, 2011. Stanton turns three on June 12, 2011 and, back in 2009, we thought this would be the perfect time to go. For starters, children get in FREE until the age of three and this is Stanton’s official last week of being a two year old. We also must have really believed what the doctors kept telling us - that most kids outgrow the developmental delays, need for aggressive therapy, specialists, reflux disease and needed nebulizer treatments.

So – here we are in Orlando – with the special medical formula, Elecare; with the erythromycin for Delayed Gastric Emptying; with the nebulizer disguised as a dragon and two inhaled steroids that go in it; with the prevacid compound for gastroesophageal reflux disease; with the steroid cream for the unexplained recurrent hives; with our undiagnosed, sick little man. What we were thinking – right?

After arriving Sunday, we woke up Monday ready to hit Hollywood Studios. Afterall, Stanton loves all the Pixar films and this is the park where most of those characters hang out. Stanton awoke with other plans. His tummy hurt and all he wanted to do was lie around, watch tv and cry. Everything was a fight….changing his diaper and getting dressed was clearly an episode straight from those fake wrestling shows. Somehow, by 9:30, we were in the car and on our way with our unpleasable child in the backseat. Stanton cried as we put him in the stroller, cried as we entered the park and had our bags searched, cried as we checked his medications and formula into the first aid center, cried as we looked for the dang Toy Story Mania ride. The crying and awful behavior escalated as we stood in line for Toy Story. He hit himself, others around him, kept falling to the floor, screaming, etc. We created quite the in-line entertainment for the hundred or so families…although I’m sure it wasn’t what they wanted to witness. Disney is supposed to be the happiest place on earth – right?

After surviving Toy Story Mania, we headed back to first aid to calm Stanton down. I washed his face, got him to drink a bottle, changed his diaper and just sat. The nurse suggested we try the Honey I Shrunk the Kid playground so loaded up our screaming child and headed that way. I really didn’t know what to do but keep walking. Everyone we passed turned to watch Stanton’s spectacle - a parade of screaming, kicking and gagging. Once inside, Stanton actually pulled it together and played for a good 20 minutes in the playground. I sat on a rock and focused on holding back the dam filling my eyes and soul.

Across the way from the Honey I Shrunk the Kid playground was a stunt car race show which was to start in 5 minutes. Stanton LOVES cars and crashing and fire on TV so we thought we should try it. The wait in line was slightly better than Toy Story only in the fact that he kept his hitting to himself. We lasted one stunt, then had to get up and leave. We were all done for the day at 1:30.

As we entered the first aid building, the sweet nurse that had been helping us all day saw it on our faces. “Leaving all ready?” she asked. My eyes brimmed with tears as I nodded. She put us in a quiet room and we let Stanton pull himself together, drink some more formula and just be. The nurse then told me we needed a disability access pass for our other park days. She was surprised we had not already done so. So, we walked next door and completed that process before leaving the park.

On Tuesday we didn’t go anywhere or do anything. Stanton continued to cry and complain about his stomach. He had several blow outs Monday and Tuesday and woke up Wednesday with his trademark bright red whelps on his checks. He goes through this very cycle about every three weeks – which I suppose has fallen on our vacation week. However, once the whelps appear, Stanton is happy again. So, with a happier version of himself, we headed to the Magic Kingdom Wednesday night. Because of our disability pass, we were able to conquer an average of four rides per hour. Thank you Disney for being so amazing and accommodating to families like ours!

I think the pictures tell the rest of our Wednesday….

MRI

  Last Monday I took Stanton to see his developmental pediatrician, Dr. Anderson. She is so nice and always really connects with Stanton. She said that she just ran across some recent research about the digestive system. Here’s what I remember from her description of the research: The digestive system is the only system in our bodies that can work apart from the body. The only way the digestive system communicates with the rest of our body is through the vagus nerve. The vagus nerve begins in the brain and stimulates both the lungs and the stomach. The research suggested that patients who were being treated for gastric issues, should instead be treated for a neurological disorder. That quite possibly there is a misfiring from the brain to the digestive system via the vagus nerve. Hmmmmm…..interesting stuff isn’t it? Okay – I’m totally a nerd, but also the mom to a child who takes a variety of medications for the various issues in his digestive system. He takes something for his upper esophagus, something for his stomach and something for moving things on out. Wouldn’t it be great if all he needed was a medication for his brain? I don’t even know if a medication like this exists yet, but the idea of it all really has me intrigued.


So – Dr. Anderson is in the process of setting up a sedated MRI for Stanton. She said that she is really interested to see what it reveals and feels it could show something. She reminded me that he has more going on than just the feeding and digestive issues….low muscle tone, mild sensory issues, and some facial features that suggest a disorder. All of this could be revealed through the MRI.

I’ll keep you posted as things progress!

Ginger

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

Double Dose

In the past, when Stanton gets pneumonia, it’s usually just in one lung. Well, this unfortunate go around shows fluid in both lungs! Poor little guy just can’t catch a break….or his breath! He just recovered from pneumonia two and half weeks ago; I hadn’t even packed his nebulizer back in the closet. As he grows, at least he is becoming more compliant with his breathing treatments, which used to be all out torture sessions. Today he came up with the idea that his monkey, Mitzi, should have a breathing treatment too.

 This is how we’ve spent every two hours since Saturday night.

In days as long as these, I really love the message found in Romans 8:18, “ I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.”

Hmmmmmm…..what will Stanton become? Will we one day look back and see this season as just a blur in his life? How will Stanton make a difference in the lives of others? What glory will be revealed within him? When I consider all the amazing possibilities before him, I get excited and know with confidence that we will endure this time and Stanton will indeed grow into all that he is to be.

Stanton LOVED flying and made friends with all the flight attendants! He was most intrigued with the “what to do in an emergency” pamphlet. The flight attendants really got a kick out of watching him study it for the entire flight. They gave us a copy to keep when we landed in Cincinnati.

Our first appointment was with the Allergist on Wednesday. We spent the first hour talking about Stanton and his symptoms. (He eats, then gets sick 3 – 4 hours later.) They were very thorough and supportive. A child life specialist came in and showed Stanton what the skin testing would look like and had him give a few pricks to a doll. She brought in lots of fun toys to keep him occupied. The testing went amazingly well. Stanton cooperated and didn’t cry until the last three pricks.

All of the testing returned negative for allergies! Keep in mind that a milk protein intolerance is not something that shows up in allergy testing….and this is something the team feels that Stanton has. But – the allergist said we can feel safe offering Stanton a variety of foods.

We had to be at the hospital early Thursday morning for Stanton’s delayed gastric emptying scan. He couldn’t eat or drink anything before the test so we just let him sleep late and took him to the hospital in his pjs. Stanton drank about 2 ounces of his formula mixed with a nuclear ion. Then he had to stay still on his back for an hour. Cincinnati Children’s is super child centered! To keep Stanton still on the table, they put a towel over his stomach and a sandbag on each side of him. He could have gotten up if he wanted, but the towel served as a reminder to stay still.

A child life specialist came right in with movies, light up toys, flashlights and glow in the dark toys. Each time Stanton became restless, she pulled something new out. He actually stayed on his back for the entire hour without complaining! The machine took pictures of his stomach every 30 seconds. Stanton passed the scan by emptying exactly 60% of his stomach’s contents....the minimum but just enough! The GI said that this proves the erythromycin is working.

After the scan we headed upstairs and met with the feeding team. Each member of the team comes in one at a time – then everyone meets together and comes up with a plan of action. The gastroenterologist comes in last with the recommendations and basically wraps up everyone’s opinions. We saw a speech therapist, an occupational therapist, a behavior therapist, a dietician, a geneticist, a nurse, and the gastroenterologist. The therapists seemed pleased with Stanton’s current therapy schedule and the things we are working on. They said he’s really made quite a lot of progress since we were there in November. The therapists watched him take bites, refuse foods and drink from a variety of containers (cup, sippy cup, straw, bottle). The only concern raised was the issue of Stanton protecting his airway when drinking/eating. Every time he finishes his bottle he starts really coughing and sounds congested for about 5 minutes. He also does this if he eats a good portion of solid food. They were disappointed that the swallow study we had done locally only showed his swallow (which is what I thought it was supposed to show). They explained that when they do swallow studies they also wait about 10 minutes after the child drinks/eats to watch the airway’s response.

The dietician was satisfied to see that Stanton’s weight has remained steady since November. I asked if we should decrease the amount of formula Stanton is drinking to encourage him to eat more solid foods and she said NO quite emphatically. She recommended that we continue giving 32 oz. of Elecare a day (his medical formula) as that’s full of vitamins and nutrition. He isn’t eating a variety of fruits or vegetables yet so the formula is what his body is thriving on. She encouraged us to keep our routine of offering small snacks at the table – but to add more variety to what we offer. For example, since one of Stanton’s accepted foods is peanut butter, try offering peanut butter on a banana or an apple slice.

The geneticist came in next. She said that all of the abnormalities that returned on Stanton’s last genetic testing are just indicators that he is on the formula Elecare. She looked at Stanton and played with him and commented that he does have hypotonia (low muscle tone) which is the culprit behind his eye issues, tongue issues, gross motor delays and stomach emptying issues. She said she didn’t feel there was a genetic issue and that we should stop pursuing anymore genetic testing. That was great to hear!

Finally Dr. Pentiuk, the gastroenterologist, came in. He said we were doing everything right and that this feeding monster is a slow and steady process. He felt like we are making some real progress. He recommended we increase Stanton’s erythromycin dose, which treats delayed gastric emptying, and see if solids stay down better over the next 3 months. If not, there is a surgery that we can come back for where he would expand the bottom of Stanton’s stomach and botex the stomach muscles. He also recommended that if we come back for the surgery, he’d like to redo the swallow study and also do a FEES, a fiber optic airway exam. Both of these tests would look at his airway while eating.

So, for now, we are back home and waiting. We will continue pushing in therapy, offering foods and just waiting for the day Stanton decides to eat and keep it down!