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…

Limbo and Prayers

Brian and I are happy to be home with Addi and Matt. Although this trip was short, I think the mental and emotional exhaustion makes the distance harder. As much as we love and appreciate the support from family and friends, ultimately Matt is the only other person who understands what I’m feeling, and even that isn’t a guarantee every time.

It is hard to sit through doctors’ appointments and listen to everything the doctors are saying while trying to control Brian, but I do my best. Usually I leave the appointments kicking myself for forgetting to ask a certain question. Even when I write questions down beforehand, I still feel overwhelmed by the information and walk away planning to check Google for answers, which never ends well.

Now we sit in limbo. It will be at least a week before any results are back. Today I booked two tickets back to Philadelphia for the end of May. It pains me to buy two tickets when I know Brian will end up in my lap. I will miss Addi’s last day of school, but I know she will be well taken care of thanks to Grandma and Miss Jaclyn…and her daddy. 😉


Tomorrow I will start calling the many doctors and setting up appointments. I’ll do my best to figure out the other details for our time there and make sure everything is planned out here at home.

As for today and every day over the next week, I will pray. I will pray for a positive test result. I will pray it will help us move forward. 


All I can ask is that you pray too. 

Home again, Home again

Less than an hour from now Brian and I will board a plane again to head home. I wanted to come up with a silly alternative to the home again, home again nursery rhyme, but my brain refuses to focus right now.

Even though we are leaving with questions, it is comforting to know the doctors have some ideas. Brian and I will return to CHOP the last week of May for follow-up tests and maybe then we will have the answers we seek.


I know it sounds odd when I say I am praying for a positive test result. I do not want my child to be sick, but since that is our reality, I need to be prepared. Positive tests results mean I will know the monster I am up against. I can prepare and plan for battle. Those who know me know I need to have a plan. 

Right now we are fighting a faceless enemy. We know it is there but have been unable to name it. We are not making up his symptoms…something has to be to blame.

So I will say my silent prayers over the next week for a result that has answers. Then, good or bad, I will prepare for battle, either against an enemy or the questions that linger.

No matter what, I will fight for my child. 

For now, as Brian says, “I want to go home.”

Right Direction 

Brian came through his endoscopy and colonoscopy like a champ.  


Once we were able to wake him and feed him a baked potato, he was full of energy and ready to go home.  Of course, as soon as he heard we were leaving, he asked if we were going to Target to get the garage.  

We loaded up and headed to Target. Along the way Brian fell asleep and when I woke him up he was soaked. Thankfully I had our suitcase and was able to change him in the car, but the fresh clothes would be short lived.

We were in Target mere moments before Brian looked at me in a frightened way. That morning the doctors had examined his colon, large intestine and into the small, taking biopsies along the way.  The after effects of the procedure were taking their toll and catching us both off guard.  I grabbed a package of wipes and a package of underwear, and set to work cleaning him up.  We were now on underwear number two, and he would go through three more before the night was over.

We ended the night in pjs at our hotel. Brian played happily with his new toy and I took the opportunity to relax a little. I ordered some Chinese and found the fortunes to be signs:

“A cautious person leaves no stones unturned” and “You are almost there.”

I took these to mean my constant quest for answers was on the right track, starting with an appointment with an immunologist.

Today we met with an immunologist and her team. After lots of questions and explanations, she decided to run some blood tests, including ones involving a possible auto immune disorder, which possibly would explain Brian’s thinning hair, paleness and other issues.  She said the results would determine additional tests, but it would be ten days before we would know for sure.

I feel like I am stuck in a dark spot between wanting Brian to be okay and wanting the tests to show something wrong so we will have answers. This also means we have to decide if we should stay for the additional tests or return home Saturday and then head back to Philly next month. I was frustrated again with the lack of faith I have in the doctors back home.

Brian screamed through the blood draw and ended up falling fast asleep in the car. Meanwhile, I spoke with the GI nurse who said the endoscopy results were great, but the colonoscopy showed large amounts of inflammation. His doctor was unsure of the cause, but promised to look for answers.

Tomorrow we will meet with Brian’s allergist and nutritionist and hopefully receive even more answers. 

I know we are heading in the right direction and I believe the fortune when it says we are almost there.