Five

There…right there…8:00p.m.

At this moment, Brian turns five.

I don’t know how it happened.  It seems like yesterday I was fighting to keep him in a little longer, and here we are, five years later.

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You see, Brian’s birthday should have been five days ago, at least if the doctors had their way.  They were concerned for my health and wanted to deliver on December 12.  I wanted to give my baby the best chance possible and managed to bargain with them to keep him in a little bit longer.

It shouldn’t be a surprise that I fight for Brian now, because I have been fighting for him since before he was born.

I poured myself a mimosa today in celebration of Brian turning five.  After all, Matt and I deserve a pat on the back for making it this far.  It hasn’t been an easy ride and there are times we have felt like the world was caving in, but we always managed to come out the other side.  I’ve said it before and I will say it again…I know how lucky we are.  Brian may not be able to eat, but I know there are millions of parents in far dire situations than ours.  Still, that doesn’t minimize what we, or even more so, Brian, have gone through.

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Think about it…

Brian is five today.  To date he has had nine endoscopies, five colonoscopies, a feeding tube placed, four hospitalizations, numerous doctors, and more needle sticks than I can count.  He has lived through what many won’t experience in a lifetime.  He has been poked and prodded, scrutinized and studied, and still finds the ability to be happy.

There are things that help with his happiness factor, including playing with anything Cars, his family and friends and the chance to chase the dogs.  After all, he is a little boy.  He has more energy than should be possible, gives me heart attacks on a daily basis and jets through every possible emotion within a five minute time span.

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He has bounced back from surgery in an astounding manner.  Once he is released from the tube and pole, he dashes around like any normal five year old.  That is what is so hard sometimes.

Brian is not a normal five year old.  Odds are he won’t be a normal six, seven, eight or so on year old either.  He has struggles, but he also has the strength to overcome them.  He is joy and light all wrapped into one.

He is my baby…my five year old boy…and no matter how old he may be, I will not stop fighting for him and the hope that someday he may live as “normal” a life as possible.

So happy birthday to my sweet boy.  I love you forever and ever.

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Is it over yet?

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I am a planner.

I like to think ten steps ahead at all times, whether with an event I am hosting, planning a trip or preparing my son for surgery.  I try to imagine every possible scenario and how I would handle each one.  I prepare for the worst at all times, but I constantly hope for the best.

I am a planner.

Brian’s surgery has been on the book for almost two months.  We knew this was coming and we have planned accordingly, even though we have a million other things going on around us at the same time.  I knew we would check in the day before for observation.  I knew when the surgery was scheduled.  I expected a phone call.

Instead, after seven phone calls and unbelievable confusion, I discovered late yesterday afternoon that there were no orders in place to have Brian pre-admitted.  In my attempt to plan for every possible scenario, I was rushing around the house organizing for an event this weekend and making sure we had a bag backed.  I did not have time to deal with the confusion caused, yet again, by Phoenix Children’s Hospital.

Thankfully, I was put in contact with a wonderful woman at Scottsdale Shea Hospital who made it her mission to find an answer.  Then, at 3:45p.m., I received a phone call telling me to come to the hospital now.  After the unbelievable confusion and lack of communication, I did not want to risk Brian not having anything else to eat, so on the way to the hospital we stopped at In ‘n Out for his “holiday” fries.

Although happy with his fries, Brian informed me multiple times during the ride that he was scared.  He kept asking if it was time for the tube and wanting me to stay by him.  I reassured him that mommy and daddy would be there and we would keep him safe, but in reality, as I sit in a waiting room, I realize how very little control I have right now.

I cannot plan for this.  Today is out of my hands and I am scared.  I know that the tube is a good thing, but I hate the pain my poor baby is going through.  I want to make it better. I want to give him the life he deserves with parties full of cake and too much ice cream.  I want him to be able to order Happy Meals and not just enjoy the toy.  I want his normal to be different.

As much as I try to stay one step ahead of every possibility, right now I have to trust the doctors to take care of my little boy. During a difficult IV placement last night, while screaming in pain, Brian kept looking at me and asking if it was over yet.  Before they took him back for surgery he whispered, “Is it time for the tube?” and his eyes filled with fear as I whispered, “Yes.”

I told him I loved him and I promised I would be there when he woke up.  That is all I can do right now.  I cannot make any of this go away and no amount of planning will prepare me for this new normal, because I really do not know what to expect.  I have read plenty of articles and I have tried my best to be prepared with supplies, but until I am in the moment, all I can do is wait, and of course, over think every possible scenario to death.

I’m used to being the “strong” one.  This isn’t the first time I have left Brian’s wellbeing in someone else’s hands and it definitely will not be the last.  I can do this because I have to.  He is my child and I would give my life for him.

Still, I am so grateful to my friends and family.  I may not show when I am hanging by a thread, but the little things they do pull me back and renew my strength.

Thank you to the friends  and family who show up.  To the ones who put complicated Lego kits together.  To the ones who make sure Matt and I are fed and Brian has his fries.  To the ones who right this moment are sitting at our home to make sure it is spotless and professionally clean when Brian returns.  To the ones who text, email, call, comment and every other form of communication.  Your thoughts and prayers mean so much more to us than I can explain and we could never thank you enough.

To my sweet boy, who during his own pain last night still wanted to pick a toy for his sister out of the toy closet, I hope it is over soon, too.

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It Takes a Village

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Three weeks have passed since my last update and, per the norm, life continues to get away from me.

During that time I had a birthday.  It is such a simple thing, we have one every year, but sometimes I feel like I am wandering through a dream and a life that is not my own.  As I grow another year older, I wonder how I do the things I do.  By no means is this me fishing for a compliment, trust me.  Instead, I am trying to understand how I can be an adult when most days what I want most is for my mom to make everything better.  After all, isn’t that what moms are supposed to do?

But, it isn’t my mom’s job to make everything better for me.  I am the mom now and my priority is and always will be my children.  The problem with being a mom seems to be that we neglect the most important aspect – taking care of ourselves.  If we don’t take care of ourselves, how can we take care of our babies?

It is probably no surprise that I have a habit of putting my own needs on the back burner when it comes to my children.  Rewinding the clock to three weeks ago, I was supposed to be packing for a trip to Philadelphia.  I was supposed to be preparing for doctor’s appointments and decisions for the upcoming year and Brian’s health.  I was supposed to be focused on Brian.

By the grace of God, the trip didn’t work out.  At the time I was frustrated, but in reality, God was doing me a favor.

I’ve always hated the adage, “God only gives you what he knows you can handle.”  When people say that to me, my response is, “Well he must have confused me with someone else.”  There are days I want to yell, “Uncle!” and give up the fight.  God must have sensed that coming, because had I packed for that trip, boarded a plane and flew across the country, I would have been in a far worse predicament.

You see, two days before we were supposed to leave, I ended up in the hospital.  If the trip had not been cancelled, Matt never would have known the pain I was in, and would not have been able to convince me to go to the ER in the first place.  My priority would have been Brian and his medical needs.  God was on my side, because not only did I have to be hospitalized, I also required surgery.  If I had hidden my pain and boarded a plane, I don’t know what we would have done.

So why the title of this blog?

Simple…I have the best village in the world.

Matt made a phone call and in no time at all, my aunt and uncle arrived to put the kids to bed (not the easiest task at times) and sit with them.  They stayed until Matt could make it home, and then my uncle returned the next day so Matt could go to work (here is where I have a hard time focusing on me…I hate to disrupt plans, so I insisted that Matt work).  My mom sat with me during the surgery, took me home, and came back the next day with a care package of food and remedies to help with the pain.  Friends brought food over, drove Addi to and from dance practices, and Annie (the best young woman I know) gave up a day to just hang out with me and yell at me when I tried to do anything more than rest.

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Brian is allergic to pumpkins, so decorating instead of carving is a perfect solution!

Knowing I have a village I can turn to is important, because our “normal” is about to change.

The same day I ended up in the hospital, I met with Brian’s allergist and discussed Brian’s feeding tube.  We went over the plan, feeding schedule, and what new foods we should consider trying.  It was an overwhelming amount of information.  A week after that appointment, Brian’s surgery was scheduled.

Brian will be admitted into the hospital on November 28.  Why are we waiting another month, you may ask.  First off, we want Brian to have every opportunity to be a normal four-year old we can give him.  T-ball finishes on November 18 and putting the surgery off till the end of November means I will be released from my post-surgery recovery and will have the strength (hopefully) to survive Brian being in the hospital.  His surgery is scheduled for the morning of the 29th, and the doctors are hopeful he will be released November 30.

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I have spent the last few weeks pouring over information regarding feeding tubes.  My Amazon cart is full of supplies others recommend having to make life easier.  I’ve searched Etsy for tube covers and even order Brian a “Tubie Friend” (a stuffed animal made by volunteers that will have the same feeding tube Brian will have).  Daily I refer to life with a tube in an effort to prepare Brian the best I can.  Each night I remind him that he won’t be able to just come to me if he wakes up in the middle of the night.  I’ve convinced Matt that we will need a baby monitor to avoid any tube mishaps during the night.  I go through a million emotions a day from overreacting to happiness that maybe, just maybe, Brian may feel full for a change.

I cannot begin to estimate the amount of children around the world who have feeding tubes.  Some of these kids are in far worse situations than Brian.  Some have had a tube since birth.  We have made it to almost five before needing one.  I know there are parents everywhere who have gone through or are going through this same situation.  We are not unique and our story is not special.

We are preparing for our new normal with a village we know we can depend on for anything.  God is (not so subtly) reminding me to take care of myself so I can be my best for my family.  This is another stepping stone towards keeping Brian happy and healthy.

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I don’t know how I can thank those who have stuck with us on this journey.  October 31 marks four years of living with EoE.  Our village keeps us going through the kindest and smallest gestures, like purchasing Brian safe foods when we are around, showing up with a treat for a Brian and including us in all the craziness that makes life great.  To our Village – thank you for your support, your questions, your advice, your thoughts and your strength.

God only gives us what we can handle?  Of course, because He knows what we are learning…we can handle anything with a village on our side.

Oh, and who am I kidding, my mom still can make everything better, even for a “grownup” like me.

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It is Time

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Four years.

The end of this month marks the four year anniversary of Brian’s first scope and the end of life as we once knew it.  Suddenly our little one year old went from a child with food allergies, to a child who would spend the next four years in and out of countless doctor appointments and hospitals.

It sucks.  There is not a more poetic word to use, either.  For four years Matt and I have fought for the best possible care for our little man.  We fought away the “worst case scenarios,” that is, until this week.

It is official, Brian needs a feeding tube.

The past few months we have endured an epic struggle with Brian over his formula.  He doesn’t want it, and basically outright refuses it.  The problem is, his formula makes up around 90% of his caloric intake.  Without the calories and nutrition the formula offers, we are rolling down a hill of potential danger.  Brian’s weight has been a concern from the very beginning.  Once we managed to get him “on the scale,” the last thing I wanted was for him to fall off.  When we first met with his allergist early this past summer, we were hopeful Brian would tolerate pork and peanuts.  If he could incorporate those two things into his daily diet, then we would be able to hold off on a feeding tube.

We cautiously began his pork regimen, which ended up equaling three pork chops a day. That is a lot for any person, but in Brian’s, case, it may have been too much for his poor body.  From the very beginning we noticed a change in his bowel habits and digestion.  Honestly, my little guy stinks.  I mean grown man farts emit from his tiny body.  I don’t know how he does it, but it is directly attributed to the amount of pork he eats.  It was pretty clear that pork was not going to work out for us, but we were hesitant to remove it because it was helping to keep him full and adding calories to his day.  Also, we hoped it was the amount upsetting him and everything would work out somehow.

The doctors insisted, rightfully so, to test peanuts in office under a watchful eye.  After three hours and various amounts of peanut butter, the green light was given to continue with peanuts.  Brian looked and sounded just fine.  The next morning was a different story.  Brian’s voice was gone…think screaming at a concert all night gone…and was painful for him to try to speak.  I called the doctor and was told to remove peanuts immediately.

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Fast forward to September…peanuts are a no-go and pork is causing a serious digestion issue.  We had a trip scheduled for Philadelphia the beginning of October, so I began the process of calling the doctors and arranging the many appointments.  I put in the request for a scope and waited…and waited…and waited.  Giving the scheduling team the benefit of the doubt, I waited as long as I could before calling the office again.  Finally I heard from Brian’s allergist at CHOP, who said that due to the description of Brian’s digestive issues, it was obvious pork is out and that they did not see cause to put him through a scope.  I mentioned that the possibility of a feeding tube had been addressed and that his doctor in Phoenix felt it should be done during the scope back east.  This led to more questions.  I asked if there was a way to determine if Brian truly was allergic to pork or if he was just eating too much for his body to handle.  She told me she would be in touch soon with the answers.  So I waited…and waited…and waited.  I sent a follow-up email to the nutritionist at CHOP hoping for more answers because time was running out for me to schedule additional appointments.  Matt and I were faced with the decision to either go ahead with the trip, even though chances were slim I could see all the specialists, or canceling the trip till after the first of the year.

This most recent experience was very uncharacteristic of CHOP.  No matter how I tried, I could not get a straight answer on the plan of action.  Matt and I were forced to make a decision.  Money is tight and we could not afford a trip to Philadelphia if I was not packing it with appointments.  We decided to cancel the trip with the hope of rescheduling it for next spring.  Luckily, the rental car I paid up front for was kind enough to refund me all but $20 of the total.

Unsure of our next step, I called the allergist in Phoenix last week and asked for guidance.  Monday’s call confirmed my fear…  The allergist requested that I move up our October 30 appointment to October 5 and asked me to call a pediatric surgeon and schedule an appointment as soon as possible.

After researching and trusting the opinion of a friend, I called an office at 4p.m. on Monday afternoon and was shocked when they said we could come in the very next day. This surgeon came highly recommended and it didn’t hurt that he is a graduate of the University of Notre Dame.  There was only one problem in my eyes…his offices are located at Phoenix Children’s Hospital.

When I entered the hospital for the appointment yesterday, I almost expected to hear a choir of angels singing “Hypocrite.”  I swore off this hospital and I have not been silent about my dislike of the staff there.  But, I trust my friend, and I trust that this doctor will be able to help us.  Plus, I made it very clear to him how I felt about the hospital and he agreed to do the surgery at Scottsdale Shea.  Since we have experience there in the NICU and PICU, Matt and I are confident with this solution.

This kind surgeon went over all of the information with me regarding a tube placement.  He listened to my concerns and Brian’s past medical history.  He decided the best course would be to admit Brian into the hospital the day before for monitoring, perform the surgery, and then keep him at least two more days as long as there were no complications.  During his time in the hospital, I would be taught all things feeding tube related.

Before surgery can be performed, the doctor needed an upper GI with contrast, which is scheduled for October 13.  After that, it will depend on the schedulers and insurance approvals to set a final date.  Matt and I signed Brian up for t-ball in the hopes he may make a friend or two, and we hate the thought of cutting this experience short.  T-ball began only a week ago and lasts until November 18.  Thankfully, the surgeon does not feel we are in a dire situation yet and should be okay to wait till t-ball ends, especially since he will not be allowed to play sports for four weeks post surgery.  If an emergency situation should arrive, we agreed a nasal feeding tube could be placed as a temporary measure.  Until I hear from the scheduler, I sit in limbo.

Tomorrow I will meet with Brian’s allergist and we will discuss the amount of formula Brian needs in a twenty-four hour cycle through the feeding tube.  We also will attempt to find a new food for Brian to trial.  The possibility of a feeding tube always existed somewhere on the horizon, but now it seems to be coming towards us like a tornado and I find myself trying to see the positive in the whole situation.

First off, for anyone wondering, the decision to place a button in Brian’s stomach instead of using his nose is a simple one.  Brian suffers from chronic nosebleeds, which have a tendency to last ten to fifteen minutes.  Less than a month ago I removed two very large and long clots from his nostrils.  In all honesty, I thought it was a worm.  I had never seen a clot like that, and now Brian enjoys showing the picture of said clot to anyone and everyone.  Also, we want Brian to live as normal a life as possible.  It is hard enough to keep him from things so many other kids enjoy.  I do not want him to have to deal with a tube hanging from his nose.  Of course, some of these concerns may be just on me.  I know I have a tendency to over think things and worry too much.  I just want what is best for my tiny human.

Secondly, a feeding tube is not a bad thing.  We have been so concerned about Brian’s weight, and now it won’t be hanging over our heads.  Instead, we can focus on finding him more foods and eventually eliminating tube feedings.  As another perk, Brian may feel full for the first time in a very long time.  Also, I will be able to administer medication through the tube whenever he becomes ill (he had cellulitis TWICE in less than a month, which required a nasty medication).  Now I will not have to fight him to take medicine.

As we wait for more answers and a surgery date, I continue to educate myself on life as a feeding tube mom.  For those who know me, it will come as no surprise that I have started a list of essential items I will need.  I know that knowledge is the best course of action and I will continue to be as proactive as possible.  This isn’t easy and it will tear my heart apart to see him go through this, but Matt and I know it is for the best.  We want Brian to be healthy and happy, and this plan will help to get us there.

If you would like to learn more about life with a feeding tube, please read the document below.  It is packed with helpful information to better understand the journey we are about to take.

Parent Guide to Feeding Tubes

We appreciate all of you for sharing this journey with us, as well as your prayers and support.  This is just another step along the way.  Before we know it, things will be, as Brian says, “Awesome sauce.”

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Slowly Moving Forward

There was a time when sitting down to update family and friends on our family was cathartic.  I found comfort knowing that by sharing our experiences I would feel a little less alone.  Lately, the idea of putting “pen to paper” is exhausting.

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So much has happened since we left Philadelphia in May.  I left angry at previous doctors and hopeful to find some answers in the coming weeks.  The endocrinologist at CHOP recommended I stop giving Brian the growth hormone shots for two weeks and then have the endocrinologist in Phoenix order blood tests to confirm if the shots are necessary.  Towards the end of the two weeks, Brian had a bloody nose that continued for ten minutes.  The next day another one lasted six minutes.  Since we still did not have an answer for Brian’s paleness, I scheduled an appointment with a hematologist.  The doctor ordered blood tests, and in an effort to minimize Brian’s discomfort, I asked the endocrinologist to place additional orders so all blood work could be done at once.

Apparently, trying to minimize my son’s pain was too much to ask.

I was told I would hear from the endocrinologist if the orders were placed, but that never happened.  I was under a crunch with the hematologist and was forced to take Brian in without the additional orders.  The process turned into such a debacle that it left me in tears, literally.

I am partially to blame for the horrible experience, because I stupidly believed I could have Brian’s blood drawn with Addi and a one year old in tow.  After signing in, we waited for almost thirty minutes before the front desk informed me that one of the tests had to be taken by courier and it would be another thirty minutes before the courier would arrive.  Brian was becoming antsy, the one year old was fed up with the stroller and Addi was bored out of her mind.  I was exhausted and suddenly it all became too much.  I told them I couldn’t wait any longer and left.  I did my best to hold it together, but by the time I reached the parking lot I lost it.

After some deep breaths and a decent night sleep, I tackled the whole process again, but this time with just Brian.  We arrived, signed in, asked for a courier to be called and waited our turn.  Having blood drawn is difficult when you try to hold down a very strong and stubborn four-year old, but the process ended smoothly, or so I thought.  The next day I received a call saying the tech had messed up and I would need to bring Brian in to have more blood drawn.  Needless to say,  I was furious!

After the second draw, we received news that both tests were negative and that if the bloody noses continue, I would need to take Brian to see an ENT.  Since then he has had only one other bloody nose, thankfully, but when it happens it is pretty scary.

As for the endocrinologist, it took another month, but I finally learned that orders had been placed weeks ago, but the office failed to contact me.  I convinced Matt to take Brian this time and now we wait to see whether the growth hormone shots are necessary.  Personally, I hope we find the proof we need, because watching Brian’s sugars go up and down is frustrating, not to mention we live in fear that if Brian becomes sick we will end up in the hospital again.

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While dealing with the blood work fiasco, we also came up against a new challenge.  Brian is boycotting his formula.  For over three years, Brian’s formula has been 95% of his caloric intake.  We have known that as long as he is drinking four to eight highly concentrated bottles a day, we could avoid a feeding tube.  I made an appointment with Brian’s allergist to assess the situation and to see if a flavored formula would be possible.  Thankfully, the doctor was able to fit us in quickly and we discussed all of our options.

We tried the flavored formula first, but it was sickeningly sweet (yes, I tried a sip), and Brian rejected it immediately.  The doctor recommended we try pork and peanut butter as an alternative.  As long as we could incorporate those two new foods, we could avoid having a feeding tube placed.  If Brian reacted to one or both of the foods, and lost weight, then it would be time for a feeding tube.

We scheduled the peanut butter challenge to be done at the doctor’s office in case of a reaction.  After five hours and multiple peanut butter tastes, Brian appeared to be fine.  Matt was told to monitor him the rest of the day and give him more peanut butter the next day.  Feeling hopeful, we tried more peanut butter the next day, but Brian was not interested.  By the third day, Brian’s voice was gone and after speaking with the doctor, we realized this was a delayed reaction to the peanut butter.

Although frustrated, so far we have been successful with pork.  The difficult part is finding pork that isn’t injected with additional hormones or seasonings.  We have been successful with Sprouts, but the cost is difficult to bear.  We try our best to keep to a budget, especially with Brian’s medical needs, but it is hard when our entire grocery budget for the month ends up purchasing pork.  For the record, Brian LOVES pork and goes through it very quickly.  He appears to be handling it well, but we won’t know for sure if there is a reaction until he has another endoscopy in October.

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I would do anything for my children.  When it comes to their health and well-being, I will spend my last penny.  Still, it all can be overwhelming when trying to stay afloat financially.  To make matters worse, when my body fails me, I find angry that I am the cause of more bills.  I have faith that everything will work out, but sometimes I do wish I had more money, or even more so, that my son was healthy.

So while I wait to win the lottery (kidding), I will continue to do my best to ensure Brian receives every thing he needs.  He has lost a few pounds, but I still hope his diet of pork, avocado, potatoes, apples and carrots will keep us away from a feeding tube.  In the meantime, I anticipate a call from the endocrinologist with blood test results and prepare for another round of doctor appointments and tests in October.

Educating Addi: Learning and Living with Brian

My name is Addi and I am 8 years old. I also have a chronic illness, it’s called Little Brother Syndrome or LBS for short. It began just 4 months shy of my 4th birthday. The symptoms came on quite suddenly when mommy came home with Brian on Christmas Eve 2012. Soon I experienced a lack of attention, sudden feelings of nausea, and an acute pain in my butt.


Over the last few years I have learned to manage the symptoms with a steady diet of complaining to mommy and liquid prozac (ice cream). At times my symptoms completely disappear when mommy takes Brian to the Philadelphia Children’s Hospital. The hardest side effect to control though is missing my mommy. She has to leave weeks and sometimes months at a time with Brian while he receives treatment. As I have said before, I wish Brian didn’t have all of these problems. There isn’t a medication out there that helps me miss my mommy less. 

I love my brother Brian very much so I don’t want him to suffer. I also don’t want him to have any more problems because sometimes he gets all of the attention. Sure, my daddy and I go out to eat and watch the Cubbies while they are gone, but I still miss my mommy. At least I can read the box scores, understand how the baseball game works, I know the cities and mascots for most of the National league, and I know what a can of corn and a dinger are. I also know that when my daddy yells out “that ball was bryzzoed!” that Kris Bryant or Anthony Rizzo hit a bomb.  

I help my daddy with Pippa, the little girl we babysit and try to make my bed. I can fix my own hair now so daddy doesn’t mess it up anymore. I try to be good but I guess I can be a pain in the butt too sometimes.

It is hard enough having to learn and live with LBS but even harder to see my little brother suffer. When mommy has to chase him around the house to check his blood or give him a shot I feel sorry for him. I don’t think I want to have to watch mommy hold him down while they take blood either.

I love my baby brother very much and I love my mommy too. I hope she can get him fixed soon. I know they have to go back again in October so I hope it will be a short trip. Until then I will appreciate the time with mommy this summer, go to swim and dance lessons, and do my best to manage my symptoms. It is hard though with Brian running around yelling “chicken butt!” every time I try to speak or messing up my dollhouse, or hitting me, or not playing right, or splashing me in the tub, or well, you get the picture.

Addison Morgan

2nd grade

2017 LBS survivor

Take a Breath

If I were a person who made rash decisions, instead of overthinking them to death, I would have called Matt this morning and told him to put the house on the market, pull Addi from school and figure out how we can move to Philly.

That might sound crazy, but after the appointment with the endocrinologist here, I have lost all faith in the doctors in Arizona.


The doctor we met with today is fantastic. He listened to the entire story from pregnancy till now, took note of all the symptoms we are concerned about, and gave a thoughtful response to our main issues. What was most concerning is that according to Brian’s medical records and from what this doctor can deduce, Brian may have been receiving the growth hormone for over a year without really needing it.

In October 2015, Brian was admitted into the hospital with a high fever, blood in his vomit, and low blood sugar. During that hospital week, here in Philadelphia, an endocrine team decided to do a fasting test. It was through this test that Brian was diagnosed with ketonic hypoglycemia. One part of the test showed that his growth hormone level was low. The doctors in Philly felt that this was not an immediate concern, and instructed us to find an endocrinologist at home who could oversee Brian’s care, and do further testing.

Now, almost 2 years later, we are learning that the doctor in Phoenix did not do the appropriate tests to truly confirm if Brian was not producing a growth hormone. Instead, it appears she misinterpreted the doctor’s notes from Philly and somehow, using just that information, managed to convince our insurance company to allow an MRI of Brian’s pituitary gland, and approve growth hormone medication. Of course, it is possible that another blood test offered more confirmation, but those records seem to have disappeared. It doesn’t help that this doctor shut her doors just this past February, and finding out any information is difficult. What we are certain of is that a main test needed to prove no growth hormone production has not been done.

So what does all of this mean? It means that for over a year and a half now I have been torturing my poor child with shots every single night. It means that Matt and I have put our lives on hold, out of concern for asking anyone to have to administer the shots. It means that wrong dosage or not, none of this was necessary. Or, maybe it was.

Unfortunately, to truly understand if any of this was necessary or not, we have to remove Brian from the growth hormone, monitor his blood sugar levels every single morning, and then put him through many more blood tests. Until the hormone is out of his body, we will not be able to determine if his body is producing any on its own.

The doctor we met with this morning will consult with the endocrinologist we started to see in Phoenix last month. If the doctor at home is on board, then I will remove the growth hormone from Brian’s regimen, we will monitor his blood every morning, and we will perform blood tests in less than a month, which hopefully will give us some concrete answers. One of the tests takes three hours and involves Brian being hooked up to an IV.

In addition to the blood test, the doctors will monitor Brian’s growth over the next 4 to 6 months to make sure he is staying where he should be on the growth scale. Any fluctuation, especially falling off the scale, would help to identify whether a growth hormone issue exists.

That being said, we are looking at flights for October to meet with the gastroenterologist, immunologist and endocrinologist here in Philadelphia to follow up on all of Brian’s care.

The endocrinologist here also decided to run some blood tests to check Brian’s current hormone levels, as well as his thyroid. Thyroid issues are common in Matt’s family, and may explain some of Brian’s issues. Additionally, he is running a urine test to check the acidity level in his urine, as well as protein. Unfortunately, more blood tests means that Brian had to be stuck with the “pointy thing” and is not very happy. Luckily, a new car was able to cheer him up.


Now that some time has passed, and as I sit waiting to hear from the doctor, I have been able to take a deep breath. I’m still seething angry with the state of care in Phoenix. It frustrates me that we have not been able to find a truly good doctor. More so, I am angry with myself for thinking the previous endocrinologist was so great. It makes me wonder if there have been other issues, and that is why she closed her doors.

Today’s appointment may not have brought solid answers to the table, but it did calm some of our questions and fears. For one, the likelihood that Brian will have to be on growth hormone for the rest of his life, if at all, is very unlikely. Additionally, the lack of change in his bone density on x-rays is nothing to be concerned about at this time. It is nice to meet with a doctor who listens to your questions and provides answers.

Waiting seems to be inevitable with our situation. So right now I will wait for a phone call from the doctor. I will wait to see whether I need to stop the growth hormone medication. I will wait to hear the results of today’s tests. I will wait for a plan.

Just like every time before, I am so grateful to be able to be here in Philadelphia and see doctors at the Children’s Hospital of Philadelphia. I truly appreciate everything they and the people we have met here have done for us. I have said it many times before, but I will never regret making the decision to fly across the country to find treatment for my son.

Now I just need to focus on my breathing, calm down, and wait for the next step.

Woo Hoo

Great news!

We are seeing an endocrinologist tomorrow morning. Persistence, annoyance and prayers do work. I really appreciate the help from the endocrinology department and for putting up with my constant calls and begging.

Hopefully this will take us down the appropriate road to a solution. I will update after with any information and whether “pointy things” are involved.

Checking the Boxes

We just finished our appointment with the immunologist.  Right now I have mixed emotions.


The good news is that Brian’s test results look good for his age, growth and development. I’m grateful for the meeting with the doctor to explain things, because from the initial appearance, I would have overreacted.

The immunologist wants us to monitor Brian’s temperature and do weekly lymph node checks. At the last visit his lymph nodes were enlarged, but today she was not concerned.  After monitoring him closely, she wants to see us again in six months.

We discussed Brian’s various symptoms again, and she feels that while some seem to correspond with an immunology issue, more likely Brian’s endocrine system is the true culprit. She recommended that we try to see an endocrinologist at CHOP so all departments can collaborate together.

The request has led to me calling the endocrinology department and begging to be seen this week. Right now I’m anxiously waiting for a call back.

The logical part of me knows I should be happy with today’s appointment, where the emotional part is frustrated we flew across the country for positive test results. Still, a box has been checked. We will continue to monitor and hopefully endocrinology will be able to see us and more answers will be found.

Brian’s health does not fit in a perfect little package with a bow. It is complicated, which means finding answers will take time.

I am grateful for the thoughts, prayers and help we have received. While my emotions may get the better of me from time to time, I never regret the time spent with these specialists at such an amazing hospital.

More than anything, Brian sees today as a win, since there was no “pointy thing” in his arm. 

On a rainy day we play at Toys R Us.

Praying 

Brian and I are waiting to board our flight to Philadelphia.

On Monday we will meet with the doctor and learn the results of his tests.

Please pray they come back positive…