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.

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!

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

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!

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

Options

Don’t you just love it when well meaning people say “Kids will eat when they’re hungry”? Well, for children with severe feeding aversions and underlying medical issues, that simply isn’t true. I’m learning that pushing food on Stanton doesn’t work. Bribing him doesn’t work. Distracting him works for the moment, but leads to all out vomiting wars later in the day. Giving Stanton a food that is completely outside of his tolerance zone absolutely doesn’t work.

Think about it…do you eat food you hate? Have you ever stepped back inside a restaurant that made you sick? What would you do if a waitress sat down with you and counted your bites? Do you swallow food when someone instructs you to "swallow"? Do you want to try a new food the same day you get over the stomach bug? So, why some people think this will work and really “cure” Stanton is beyond my understanding. How can you do these things to a child and expect them to eat?

Thankfully I now have a team of therapists who understand this and are wonderful with Stanton! It’s taken a LONG time…but I can say with joy….I love our therapists! Stanton really has made such progress in so many areas. He is really turning into a fun little boy.

Tomorrow we are going to see the Children’s Center. This is a school for 0-5 year olds with developmental delays in Hattiesburg, MS (about an hour north of us). They are on the campus of the University of Southern Mississippi. Each classroom is lead by a speech therapist. Our behavior psychologist consults with this school and has pulled some strings to get us a tour. Next Friday, January 21, Stanton will be evaluated by our local public school district. He’s been receiving services through early intervention, but those services end with his 3rd birthday. So, we’re spending the next few weeks looking at school choices for Stanton. It’s nice to know we have a couple of resources and a possible choice.

On Friday, Stanton goes back to see the ophthalmologist. He had eye surgery when he was just 10 months old. His right eye is just not working….I notice Stanton rubbing it and poking at it a lot. He says it’s “fuzzy.” Sometimes this right eye just glazes over and I can tell he’s not using it. I’m not sure what the doctor will say or do – but I’ll post when I know something.

Ginger

Open Doors

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

~ Alexander Graham Bell

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

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

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

Joy

Merry Christmas everybody! 

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

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

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

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

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

More Medication Please!

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



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

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


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