Battered and Bruised

Today I awoke battered and bruised; physically, mentally and emotionally.

My arms and legs show the signs of tiny fists and kicking feet trying desperately to understand what is happening and angry that mommy won’t give him what he needs.

I held him through a tube being placed in his nose and the screams that came after. I rocked, I carried, I sang till peace settled across his face.

This process repeated through an IV insertion in the middle of the night. At some point I lost track of time as nurses checked his sugars every so often. Morning brought a low sugar reading and a very lethargic little man.

I am powerless…how must my sweet boy feel?

Matt once took pictures of Brian thrashing in my arms. He said he wanted Brian to know what I went through for him.  Here we are two years later and I still hold him. I don’t need him to know what I went through; I just need him to be okay.

October 31, 2014 was the first endoscopy/colonoscopy of this journey. Since then we have cried together through six more. April 24, 2017 marks scope number eight. 

I can tell you exactly when and where each scope happened. I cannot forget my sweet boy’s face as the anesthesia took over.  I remember every doctor and nurse along the way. I feel like I am becoming an expert and it sucks.

Fortunately, these doctors are amazing. They are working on scheduling more tests and appointments with other specialists. I am so grateful for all they do.

I am sitting in an empty pod, waiting for my little boy to return. “Friend” rests in my lap. All around me people are talking about the most ordinary things. 

How did this become my ordinary?

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I Want to Go Home

Brian and I arrived safely in Philadelphia on Thursday morning.  In the future I should rethink overnight flights.  Brian was fantastic and slept the whole time.  Unfortunately, I did not.  Twenty minutes in thirty-eight hours was not enough to keep me positive and upbeat.

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Still, Brian was excited to ride in a “woo-woo” car from the baggage claim to the rental car.  Our awesome escort even turned on the lights for Brian’s enjoyment.  We were able to visit with family during the day and Brian had a great time.

Before meeting friends for dinner, I made a stop at Target to pick up some supplies for Brian and, of course, pass through the toy section.  Brian found a set of Disney Cars he just had to have and another toy garage to use with the cars.  I convinced him to go with the cars for now, but we would return to get the garage after we went to the hospital.  Brian thought this over.  While I made our way to the front of the store, he looked up at me and said, “Mommy, I don’t want the garage.  I don’t want to go to the hospital.”

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Traveling is too much for him. Time to sleep.

My sweet little boy had made the connection: doctors, needles, appointments, hospitals all lead to toys.  If he removed the first part, he would not receive the toys, but at least he wouldn’t need to be poked and prodded.  My heart broke in the moment.  I’ve often said that Brian is spoiled rotten because whenever he has to experience something unpleasant we buy him a toy, because candy, ice cream or other bribes are not a possibility.  Plus, I figured he liked receiving the little gifts.  This revelation on his part made me feel like a horrible mother.

Usually traveling is an exciting adventure, but Brian has seen through all of the playtime with cousins, reunions with friends and little gifts.  He has made himself clear from the first night we arrived, “I want to go home.”

He doesn’t understand the distance we have travelled.  He wants to know why we cannot go home to daddy and sissy.  He doesn’t want to see any doctors and he doesn’t want any toys.

I woke him yesterday morning to go to a doctor’s appointment.  Before starting the long drive, he told me he didn’t need to see the doctor and wanted to go home.  I tried to bribe him with the fun toys they would have at the doctor’s office, but he wasn’t interested.  Luckily, he fell asleep quickly and didn’t put up a fight when we arrived.

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Waiting for the doctor.

Doctor Liacouras is wonderful and it is refreshing to leave an appointment fully confident in a decision.  Traveling across the country is worth every penny for the quality care we receive here.  He calmed many of my mommy nerves and offered suggestions for further answers.  We also learned that Brian will be admitted into the hospital at 10a.m. Sunday morning.  He will have an IV to monitor fluid intake and an NG tube will be inserted to facilitate the clean out before his colonoscopy.  I am dreading what tomorrow into Monday will be like.

After his appointment I emailed my contact within the EoE clinic and expressed my concerns regarding some of his other symptoms.  I do not deny that I probably am a crazy and overprotective mom.  Maybe I am reading too much into nothing, but my gut is telling me that we have missed something.  I expressed my concerns and now I wait and hope that his allergist/immunologist will order more tests to be completed while we are in the hospital.  I do not want to put my child through more pain, but I would never forgive myself if we learned in the future that there was something wrong and I did not fight hard enough for answers.

I’ve run out of answers to Brian’s constant question as to why we cannot go home.  I don’t know how to make this easier on him.  More than anything, I wish I knew I was doing the right thing.  That is an answer I may not receive for many years.  Hopefully I will look back years from now and be confident in every decision Matt and I have made for Brian’s well-being.  At least, that is what I am praying for today.

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My sweet, sweet boy.  He climbed into bed with me this morning to snuggle.

Yes, Brian, I want to go home, too.

Planes, Automobiles and Hospitals

In a few short hours, Brian and I will board a plane for Philadelphia.  For months I have been planning for this trip – organizing appointments, discussing medical history, begging for answers.

It has been a roller coaster of ups and downs since I wrote last.

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Brian and daddy

For instance, Brian’s endocrinologist decided to close her doors.  Since returning from Philly, I have found this particular doctor to be one of the few who championed for Brian.  She educated other doctor’s during hospital stays, listened to my questions and concerns, and seemed to put Brian’s well-being first.  I was devastated when I received the text message (yes, they notified via text and email) that they would no longer be seeing patients.  The idea of finding another endocrinologist seemed like an uphill battle I was not ready to tackle, and in some ways it was.

During the many conversations with nurses at the Children’s Hospital of Philadelphia, I was instructed that with Brian’s irregular blood sugar history, I needed to find a new endocrinologist and see this new doctor before arriving in Philadelphia.  This task was easier said than done, since all of his endocrinologist’s patients were bombarding the same group of suggested doctors looking for appointments.

After my many difficult experiences with Phoenix Children’s Hospital, I tried my best to steer clear of their department and instead reached out to a doctor with a private practice.  His nurse was very kind and although he was booked for months out, she felt we were a priority and promised to speak to the doctor.  The next day I received a call from her with disappointing news.  According to the doctor, Brian was too “difficult and complicated” a patient and I needed to find a doctor directly linked to a hospital and a team of specialists.  I’m not sure how I should feel to know that my kid is too much for a licensed doctor to treat.

I broke down and decided to call the recommended doctor associated with Banner Children’s Hospital.  While I am not thrilled with Banner, Brian’s local gastroenterologist is associated with them, which meant the main medical history and information would be in their database already.  Although I did not have high hopes, I was beyond grateful when the receptionist told me she could fit me in on Tuesday, April 18, the day before we left.

Planning a trip with a small child is a special kind of hell at times, but when your child comes with a suitcase full of medical supplies, it can be a time-consuming and exhausting process, but I was not about to let this small blessing slip by me and graciously took the appointment.  I believe God has a hand in the biggest struggles and this appointment turned out to be a blessing.  While discussing Brian’s medical history and medication dosage, his new endocrinologist commented that Brian has only grown a quarter of an inch since December, and he felt it was best to increase his dosage.  I explained that while the medication is concentrated for a “pen,” we use an insulin needle because it can be administered faster.  After working the math problem forwards and backwards multiple times, it became overwhelming evident that we had a problem.  For the past nine months, Brian was receiving 1/7 of the dose he needed to maintain his blood sugar and GROW.  We had been instructed by the previous nurse to give Brian 5ml every night, but in reality, the dosage conversion showed Brian should have been receiving 36ml every night.

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Brian and his “girlfriend” Pippa.

I know doctors are not perfect.  They are human and make mistakes.  This mathematical error was a mistake, but a mistake that was taking its toll on Brian’s well-being.  Suddenly the events of the past months began to make sense.  Brian would wake up in the morning with low sugar and it confused me since he wasn’t sick.  His sugar would fall drastically during the day or when a fever struck.  His tantrums increased and at times he appeared to be possessed – sweet one second and violent the next.  According to his new doctor, Dr. Hahnke, the wrong dosage could be the explanation.

Last night I administered the first CORRECT dosage and it shocked me to see how much medication I had to push into his small leg.  He took the shot like a champ and promptly replied, “That didn’t hurt.”  Now I sit and cautiously hope the medication will do its job and things may settle down.

With his appointment out-of-the-way, I relayed the information to the nurse at CHOP and it was decided that since Brian’s body will need time to adjust, it was best for Brian to be admitted into the hospital Sunday afternoon in preparation for his colonoscopy and endoscopy on Monday morning.

Most parents want to avoid having a child in the hospital, but I see it as a blessing.  The nurses, endocrinologist team and doctors will be able to monitor his blood sugar during his “clean out.”  They will make sure he has fluids and take a huge weight off of my shoulders.  Also, after speaking with the nurse, I will try my best to see if another specialist might be able to check on him.  The nurse asked if he has seen a rheumatologist, immunologist or oncologist.  I told her no but would love to have one of the first two as consults.  The last thing I want to think about is needing an oncologist.

This extra concern stems from the ups and downs we have experienced the past few months.  Below are a list of things that have happened with no explanation:

  • Low blood sugar after eating (now attributed to wrong dosage)
  • Bloody noses without cause (nostrils are not dry and he wasn’t picking his nose) – This includes waking up with blood all over the sheets or drops falling while he watches cartoons.
  • High fevers without any other symptoms and they do not respond to medication
  • Bruising easily
  • No bone growth – x-rays taken one year a part show Brian’s bone age to be that of a two-year old.  Although he is taller, it does not appear the density of his bones is changing.  This could be due to the lack of calcium (his formula is meant for infancy, not forever) or the wrong growth hormone dosage.  His allergist told us to be prepared for Brian to have osteoporosis at a young age.
  • His face is paler than the rest of his body.
  • Difficulty sleeping
  • Blood in his stools
  • Weird welts on his body – at first they appear to be bug bites, but over a couple days the color, size and texture changes to look like something I have not seen.
  • Overheating – after playing outside for ten minutes, Brian overheats and has trouble cooling back down.  The same happens when he sleeps.  It appears he has difficulty maintaining his body temperature, which may explain his extreme dislike of wearing clothes.
  • Peeling of his palms and feet, leaving his fingertips and toes raw.

Perhaps some may think I am overreacting to some of the items listed above, and maybe I am.  My gut is telling me that we have missed something.  There is a bigger issue at hand and no one has been able to catch the culprit.  Maybe there is an autoimmune disease causing his poor body to react to everything and anything.  Maybe there is an immunological condition we are not aware of just yet.  Whatever the case, I want answers.  I do not want anything to be overlooked.

Day to day life is not always easy.  We cry, we argue, we laugh, we fall down, we start over a hundred different times, but we NEVER give up.  My last post talked about the struggles I have had dealing with life.  Those struggles are a day-to-day battle for me, but I have no problem placing them on the back burner when it comes to my child.  I will not stop till we have all the answers.  I want my child to live a normal life. I want to not have to worry about medical expenses.  I want to be rich so I can travel to Philly every couple of months and deal primarily with doctors I have grown to trust and respect.  I want my baby to be healthy.

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He was concentrating so hard!

While I prepare for the days ahead, I am excited to see friends and family.  I made sure to schedule the trip so I could enjoy TWO nights of prime rib at the FOP.  I cannot wait to hug my second family, my east coast support system, tomorrow night when we arrive at the FOP for dinner.  In their protective embrace, I will have a chance to breathe.  Until I wrote these words, I didn’t realize how much I need them.  I will visit with family and remember how blessed we are to have so many pulling for us.  I have not forgotten everything my family and friends have done for us, and try as I might, I’m not sure I will be able to repay them.

As much as I hate to admit it, I have lost control.  I am now along for the ride and like the song says, “Jesus, take the wheel, because I cannot do this on my own.”  I look forward to the insights this trip will bring.  The team of doctors we have at CHOP are the best and I know they will find an answer.

Now I will mentally prep for an overnight flight, multiple doctors’ appointments, a hospital stay and days spent with my sweet little man.  Through all the struggles, his smiles, kisses and hugs are all that matter in this world.

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Brian cannot eat anything at Chuck E Cheese, but he loves the games and dancing with Chuckie!

I’ll see you in the morning, Philly.

New Year’s Resolutions

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It has been a LONG time since I could muster the strength to sit in front of a keyboard and bring the world into my life again.  Honestly, my silence stems from a fear of coming across as all “doom and gloom.”

While we have had ups and downs this past year, the hardest part has been me.  I realized it was time to update those who continue to love and support our family, but also to be a voice for the thousands of moms out there who are afraid to share how they are feeling.

I know how lucky we are that Brian’s condition is controlled and manageable at this time.  Even though his food options are limited severely, he is a happy and healthy looking four-year old.  We have managed to avoid any hospitals stays since January, and the three endoscopies this year brought positive test results.  Dealing with EoE is a slow process and can be daunting at times.

Adjusting to being back home after six months away was difficult.  Now after being home for a year, I feel like I have lost the spark that makes me…me.

Below are some scary and interesting statistics regarding being a caretaker (Courtesy of caregiver.org):

Caregivers show higher levels of depression.

  • Studies consistently report higher levels of depressive symptoms and mental health problems among caregivers than among their noncaregiving peers.15, 16, 17, 18, 19
  • Estimates show that between 40 to 70% of caregivers have clinically significant symptoms of depression, with approximately one quarter to one half of these caregivers meeting the diagnostic criteria for major depression.20

Caregivers suffer from high levels of stress and frustration.

  • Caregivers have higher levels of stress than noncaregivers.26 They also describe feeling frustrated, angry, drained, guilty or helpless as a result of providing care.27
  • Some 16% of caregivers feel emotionally strained and 26% say taking care of the care recipient is hard on them emotionally.28 An additional 13% of caregivers feel frustrated with the lack of progress made with the care recipient.29
  • Caregiving can also result in feeling a loss of self identity, lower levels of self esteem, constant worry, or feelings of uncertainty.30 Caregivers have less self-acceptance and feel less effective and less in control of their lives than noncaregivers.31, 32
  • More than one-fifth (22%) of caregivers are exhausted when they go to bed at night, and many feel they cannot handle all their caregiving responsibilities.33

While in Philadelphia, I had days where I found it difficult to do anything, even leave the hotel room.  Due to the circumstances, this never lasted long before I was bombarded with kind requests for visits, dinners, etc.  Home is a different story.  Here, life around us continues to move quickly and in many different directions.  Not only do I have the responsibility of ensuring Brian eats only his safe foods, receives his medications, attends doctor’s appointments, scheduling endoscopies, etc., I also have a beautiful seven-year old who needs my attention and love.  She has lunches to prepare, school events to attend, homework to check, Girl Scout projects to complete and so much more.  While at home, I am pulled in many directions with my children, while trying to keep my house from falling down, the laundry done and keeping up with my outside commitments.  Eventually, it becomes too much.

 

I have been fortunate to have some amazing friends and family, who have noticed the change in me and have not stopped in their quests to bring me back.  Even when I avoid phone calls or invitations, they are persistent and I am grateful.

I am not ashamed to admit that the past couple years have caused a depression to grow.  I am not looking for attention or sympathy from anyone by admitting this, either.  I guess I just want all moms to know it is okay to not be okay.  I am working on finding my way back to who I was and doing the things that make me happy.  I love my children more than words can say, and when I feel good, I can appreciate them for all the blessings they bring to my life.

If anyone out there feels lost or alone, I urge you to find help.  Once I opened my eyes, I found a sense of self in places I had forgotten to look.  I took on the responsibility of organizing a statewide memorial tribute for Fallen Officers.  I didn’t do this project for notoriety or recognition, but because it was the right thing to do.  Working on it showed me the truly wonderful people who live in this world and I am honored to be a part of it (It also deserves praise back to Philadelphia, where I first learned of the program – Brian’s illness did bring good things our way).

This post is not meant to be a “woe is me.”  It is an explanation and as part of my New Year’s Resolutions, I resolve to share more with those who continue to follow our story and check on Brian’s wellbeing.  I do not alway have much to say, but being asked means a lot to our family.

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I am lucky to have such an amazing little man.  He has five safe foods right now (apples, carrots, potatoes, avocado and pears) and we are trying oatmeal, which means he has the pleasure of eating “oatmeal cookies.”  I use quotes, because they are made with gluten-free oats and unsweetened apple sauce.  While very cardboard tasting, Brian loves them and he enjoys having a cookie to eat when his sibling and cousins are enjoying dessert.  We have managed to stabilize his blood sugars, although since he has grown significantly this past year, the dose had to be raised on his growth hormone (Brian does not produce a growth hormone, so without the additional dosage, he could not grow and stabilize his sugars).  Doctors are thrilled with his progress so far, but have come to the conclusion that any type of meat will not be added to his diet anytime soon.

I am not thrilled with the services we have here in Phoenix.  I adore our endocrinologist, allergist, pediatrician, and I like our gastroenterologist, but cannot stand his staff or the hospital where he performs procedures.  It seems that watching my son go through eight endoscopies in less than two years does not qualify me to know what medication is needed to make a scope successful (sense the sarcasm?).  His last scope resulted in a reaction when he awoke and a violent outburst.  It is frustrating, but I look forward to returning to Philadelphia this next year to meet with his team of doctors and discuss the right course to take in the future.  It is a huge relief to know I have the Philadelphia doctors to turn to when doctors in Phoenix leave something to be desired.

Each day brings trials and rewards.  Being Brian and Addison’s mom is my most important job and the one I plan to devote the most attention to this next year.  I know I have to start taking time for myself and only doing outside activities that bring me joy.  Thank you to our family and friends for your ongoing support, especially to those who stand beside me here in Phoenix and across the country, even when I go silent.  You keep me going.

We wish everyone a Happy and HEALTHY New Year.  I look forward to the promise of hope 2017 brings, and wish nothing but joy for your families.

Leaving on a Jet Plane

The past three weeks have involved a roller coaster of emotions.

To begin, Brian developed a cough that turned into a high fever.  I spent an entire day holding him while he slept off and on.  On Thursday, January 21, he awoke early with a bloody nose.  Matt was able to get him back to sleep with me before leaving for work.  He woke again shortly after Addi left for school.  He was warm, so I put him in the bathtub, where he had another bloody nose.  I decided to check his blood sugar and it was 54.  I gave him some fruit snacks, which he promptly threw up, and took it again fifteen minutes later to find it at 45.

I called his pediatrician, knowing that I would have to take him to the emergency room, but also wanting him to call ahead and order blood work (a recent blood test showed that Brian is borderline anemic).  Of course he directed me to go to the hospital stating that Brian needed fluids immediately to bring his sugar up.

The hospital confirmed a low blood sugar (44) and began giving him dextrose.  They also ordered a chest x-ray to rule out an upper respiratory issue and gave him a breathing treatment to counteract the retraction he was experiencing in his chest (X-ray was clean).

I really believed that after some dextrose he would be able to return home.

The doctor came into his room and said it was unsafe to send him home, but that the hospital was not equipped with a Pediatric ICU, and she wanted to have him transferred to another hospital.  She gave me a few options, and I decided to take Brian back to the hospital where he was born, Scottsdale Shea.  I was familiar with the NICU there, and I hoped the PICU would be just as great.

Since Brian’s sugars were unstable, the doctor would not allow him to be taken off of the fluids.  An ambulance transport was called, and I felt like I was living every mother’s worst fear as they loaded him onto a stretcher and into the back of the ambulance.

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Brian was perfect for the entire ride and didn’t fight them even once.

We were delivered to the PICU at Scottsdale Shea, where he was hooked up to more monitors and fluids.  The intake doctor spoke with me about Brian’s history and said he would contact Brian’s endocrinologist for further details.

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Long story short, Brian remained in the hospital for a week.  Even with dextrose, his sugars kept falling, and after an MRI to rule out a tumor or cyst on his pituitary gland (neither were found), he fell to 44, and that was with a constant flow of dextrose.

The doctors seemed baffled by the situation, and eventually agreed that Brian would not be able to stabilize his sugars on his own until he was started on a growth hormone.

We were released from the hospital on a Wednesday evening, and I decided to wait until Thursday night to torture Brian with his first dose of growth hormone.

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Excited to go home!

My sweet boy never ceases to amaze me.

He took that first injection, and every one since like a true champ.

We met with his endocrinologist the day after his first dose, and she informed me that Brian would need to be on the growth hormone until he “stopped growing.”  After that point, he would be removed for a few months to see if his body could maintain the appropriate levels.  She feels, based on his blood work, that he will need to continue a growth hormone dose for the rest of his life.

My mind flashed with what this means for our family.  It may sound silly, but I imagined a future without date nights or vacations away from the kids.  I know I am being selfish, but it came from a good place.  Giving a shot each night, even though it is a tiny needle and is not painful to Brian, is not an easy task, and I cannot ask anyone else to be responsible for administering it.

The doctor assured me I could alter the schedule and educated me on what to do if a dose was missed.  It all sounds so simple.  I just wish I didn’t have to put Brian through it every night.

Now that Brian has been on the hormone for a whole week, I am blown away by the difference in him.  He is happier, more energetic, and only seems to have a tantrum when he is tired.  It really makes me wonder how many times we thought he was just being bratty, when really he was suffering from low blood sugar.

The doctors are hopeful that the hormone will increase Brian’s appetite.  It hasn’t happened yet, which is why the possibility of a feeding tube still hangs over our heads.  Brian has not gained weight in almost a year, and being in the hospital again only caused his weight to drop.  I will know just how real the possibility is by the end of the week.

Today, Brian and I boarded a plane for Philadelphia.  He will undergo his fifth endoscopy on Monday morning.  By Thursday the doctors will be able to tell me if Brian is allergic to potatoes or lima beans, and then we will start the process all over again with two new foods.  Hopefully we will find a meat that is safe to try.  Even more importantly, I hope that potatoes are safe.  This kid has LIVED on potatoes in every form the past couple months.  I do not think lima beans will make it past this round, only because they seem to be causing a FPIES reaction, but time will tell.

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I’m excited to see the family and friends we left less than three months ago, and I pray that his appointments go well.  It is amazing how easily I fell back into the rhythm once we left the airport.  I feel like I know parts of this city as well as I know Phoenix, and that is comforting beyond belief.

Tonight I hope Brian goes to bed early, because I am beat.  His newfound energy is exhausting and exhilarating at the same time.  We have a lot to accomplish before heading home on Friday, and I hope I will be reporting back with good news for all.

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Enjoying potatoes in the hotel room.

Fall Down

Once upon a time, I was an optimist.  As a young girl, I believed that good things happen to good people and bad things happen to bad people.  As an adult, I am not as naive and I understand that difficult situations can happen to the best of people.

I am not implying that I am the “best of people,” but I would like to think that I am a good person.  I would, and have many times, drop everything if a friend or family member needs me.  I try my hardest to put others first and I’m not one to sit idly by while others do all the work.

But I have to admit, the past eight months have taken their toll on me.

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Leaving Philadelphia was a lot harder than I thought it would be.  I didn’t realize how much I had come to depend on the people I met to get me through each day.  I didn’t realize how much I would miss Thursday night prime rib dinners at the FOP Lodge with Mr. Thom.  I didn’t realize how much it would hurt to say goodbye to my family and new friends.

It may seem silly since Brian and I will be back sooner than later, but for almost six months, we lived in a safe and controlled bubble.  I knew exactly what Brian was eating or being exposed to.  Once we returned home, the playing field changed.

We arrived home the Friday before Thanksgiving.  Since I have a history of taking on a little too much, Thanksgiving with family was being held at our house.  Matt was wonderful and took the week of Thanksgiving off to help me ease back into my routine.  We prepared for Brian to be able to eat plain potatoes and lima beans.

I even made him a potato crust apple pie.

But when Brian awoke Thanksgiving morning, he was in no shape to try any foods and was not interested in his bottle either.  By the end of the night, his fever was coming dangerously close to 106.

Frustrated by these high fevers without any other symptoms, we checked his blood sugar (it was fine), and did our best to bring his fever down with suppositories and damp cloths.  Luckily, by morning he was feeling much better.

When we met with the local allergist we had found and filled him in on the recent fever episode, he decided to check Brian for Reoccurring Fever Syndrome (yep, let’s add another issue to the list!), as well as some other possible genetic conditions which could cause his unexplained high fevers.  He also put a game plan in place for the next round of food trials and allergy tests.  Aside from being bored with the extended appointment, Brian did wonderful and made sure to remind the doctor to use every tool during the exam.  Before we left, another set of skin tests was performed and it looks like we are adding rabbit to his list of allergies.  This proves to be a minor issue since we own a rabbit, but the doctor assured us that Brian would be fine as long as we limited his exposure and washed his hands if he were to touch Dodger (yes, our rabbit is named after the Dodgers.  We used to have an Irish and Cubby, as well).

I took everything the allergist said (including the willingness to work with CHOP and any GI specialist we found) and an order for a large amount of blood, and dove into the month of December.

Every time I went to a grocery store, I would scour the frozen potatoes section for safe french fries or hash browns.  I began to buy potatoes in bulk and discovered many ways to cook them.  I bought a dozen cans of lima beans and tried to incorporate them into his diet on a daily basis.  Brian can be heard asking for “tatoes and beans” pretty much every day now.

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Brian turned three on December 17, and doing my best to make it feel like a special day, we went to In ‘n Out as soon as they opened and bought three orders of french fries (they are the only fast food restaurant with safe fries, using only three ingredients).  Brian was thrilled.  Matt says we now hold the record for the shortest “Sweeney” birthday party.  True to my word, we served only french fries, apple sauce and apple juice.  We are grateful to our family and friends who were able to attend, and beyond appreciative of the understanding and acceptance of our limited menu.  To end the party, I presented Brian with a “cake” made of apple chips and french fries piled around a candle.  Brian loved being able to blow out a candle and enjoyed eating his french fries.

Brian had no problem returning home.  He ran right into the house and went nuts seeing all of his toys again and his room.  He played with his cousins and helped me prepare our home for Christmas.  Listening to his sister, he quickly learned the words to Jingle Bells and Rudolph the Red Nose Reindeer.  He can imitate Santa and randomly yells out, “Ho, ho, ho, Merry Christmas!”  He was elated Christmas morning when he walked out to see a train table and didn’t seem to understand the concept of opening all of his presents.  He would open one and demand that I take it out of the box.  Addi was done with her presents quickly, while Brian’s pile remained untouched as he played with his train table or the first present he opened.

For Brian, life was back to normal.  He had his mommy, and now daddy and sissy were around too.

For me, it has been a lot harder.

I have had a difficult time finding my place again.  I’m not ashamed to say that I am overwhelmed and burnt out.  Honestly, I just need a break.

I need a break from the string of bad news that has assaulted our family.

Most recently was this past Tuesday.

After diagnosing Brian with hypoglycemia while in the hospital in Philadelphia, I made an appointment with the endocrinologist we saw when Brian was nine months old.

While sitting in the doctor’s office, Brian began to act a little off.  The doctor brought me a glucometer and it showed that Brian’s sugars were low.  After encouraging Brian to eat some fruit snacks, he began to perk up.  I showed the doctor Brian’s blood test results after his twenty-four hour fast (done while he was in the hospital) and she told me it confirmed that Brian is not making the proper levels of growth hormone.  When his sugars were low, his growth hormone was very low.  Since I had his blood results, she decided she did not need to order more bloodwork, but did want to have an x-ray of his hand (to check growth plate and use as a monitoring tool) and a MRI of his brain to determine if there is a cyst or tumor on his pituitary gland causing the low growth hormone.  Brian will have to be put under anesthesia for the MRI.  She also instructed me to carry a glucometer with me at all times and keep one handy at home.  This means more sugar checks and not just when he is fasting or sick.

In addition to the tests, I will be taught how to give Brian hormone injections every night.  Hopefully the issue will resolve quickly, but I am preparing for the reality that he may need these shots until he hits puberty.

As a silver lining, his doctor does have a couple GI doctors she can recommend who are local.

Needless to say, Tuesday was a low point for me.  I have been fighting for the best possible care for Brian.  I’m trying my best to keep it together and it was obvious as I sat at his appointment that I am off my game.  Unlike other appointments, I was having a hard time remembering details and was not as organized as normal.  Luckily, his doctor is patient and took plenty of time to calm Brian and talk me through things.

She is optimistic that once we begin the hormone injections Brian’s appetite will increase, which should keep me from having to discuss a feeding tube with his EOE team in February.  Right now he is not gaining weight and has begun to fall off the growth chart.  We will return to Philadelphia in February to have Brian scoped again and to meet with his team to see if potatoes and lima beans are safe.  From there it will be decided which new foods will be added to Brian’s diet.

It is a lot to remember, a lot to take in, and a lot to deal with day to day.  Brian is strong and happy.  He powers through these tests like a champ.  And the bright side?  All of these issues and conditions are being identified when he is young and I have found the best doctors to help him.

But, I’m not perfect.  I’m not a supermom.  I’m doing the best that I can and I fall down a lot.  Some days are harder than others and some days the tears fall too easily.  Still, in the words of Tim McGraw, “I will not fall down without getting up.”

Auld Lang Syne

We have been home for about six weeks now, which means I am very behind in my blogging.

Being home has been an adjustment, but I will go into that in more detail in my next post.

For now, I want to reflect on 2015.

There have been years that I could not wait to see end.  When I was younger, a car accident could derail an entire year.  As an adult, the death of a loved one left me with few fond memories of the year.  Now, I can say with absolute certainty, I am ready for 2015 to end.

We have had our ups and downs the past year, but I am reminded of Bing Crosby in White Christmas telling Rosemary Clooney to “count her blessings instead of sheep.”  We have been blessed with many things this year.

Our biggest blessings come from family and friends who have supported us through a difficult year.  They offered words of encouragement, shoulders to cry on, and strength to keep going.  We made new friends and received blessings we could never have imagined from those in Philadelphia and the Fraternal Order of Police.  We were blessed with an amazing team of doctors, who have gone above and beyond for us and Brian.  Mostly, we were blessed with each other.  At the end of the day, we have had each other to lean on, and that is what matters most.

Still, this year has not been easy.

Our family spent almost six months separated.  We missed events which cannot be repeated.  We struggled alone and together.

These struggles were not just within our immediate family either.  I have begun to beg God to pay attention to someone else for a change, because I am not sure how much more I can take.  It feels like right when I get a handle on Brian’s world, something in the outside world comes crashing down on me and, whether true or not, I feel like everyone is looking to me for strength, solutions, and comfort.

Some days I don’t know how much more I can give.

I know that 2016 will bring its own challenges and hard times.  I also know that it has the potential to bring wonderful things our way.  Words cannot covey the gratitude I feel towards those who did so much for us and contributed to the bright moments in 2015.  Still, I’m also ready to see 2015 fade away.

Good or bad, happy or sad, I have to remember the words of Bing and I try to go to sleep each night counting my blessings.

I am blessed to have two beautiful children.  I am blessed to have a husband who sacrifices so much and would do anything for me.  I am blessed to have family and friends (new and old) who love me just the way I am.  We are blessed that Brian is a happy child despite everything he has been through.  I am blessed to have learned more about myself and many other things this year.

2015, thank you for the lessons and the blessings.

As for 2016, bring it on.

A Different Child

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Last Friday, Brian behaved like a trooper during his fourth endoscopy in just over a year.  He bounced into the waiting room, allowed the nurse to put an identification band on him, and did not cry even once when they did his vital check.

Just like in September, the procedure went off beautifully, and I was by his side when he opened his eyes.  Thankfully, unlike last time, Brian’s blood sugar remained normal and there was no need to urge him to drink lots of formula when he awoke (of course, I did ask the anesthesiologist to make sure Brian had plenty of anti nausea medication – the nice man was feeling generous and offered to give him three different types!).  When we arrived back at the hotel, there was no vomit to clean up or baths to be given.  Brian went about his life like it was a normal day.

The GI doctor, who performed the scope, told me things looked good and any possible areas were biopsied.

Then the waiting game began.

To distract ourselves, I focused on packing up our hotel room, and Brian focused on pulling everything back out.  It was a tedious process.

But we still found time to have fun during our last few days here.

My cousin was gracious enough to rake the leaves in her backyard into giant piles.  Brian proceeded to bury himself, run through and throw the leaves in various directions.  It is one beautiful memory that is difficult to recreate in Phoenix.

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On Tuesday evening, my sister arrived to help bring us home.  It felt like a huge weight was lifted from my shoulders when I finally saw her.  It has been so long and I don’t think I realized just how much I was missing her in my every day life.

With my “Time to Leave” plan in full motion, I waited for Brian’s appointment to arrive.

Thankfully, the test results are in our favor!  Apples are in for the long haul!

Brian was beyond helpful with his allergist, even going so far as to remind her which tools she needed to use to check him.

When it came time to do skin tests, his demeanor was not as accommodating.  I think the process of holding his arm out straight brought back flashes of IVs and hospital stays.

We decided to test lima beans (sorry, dad) and white potatoes to see if there was an obvious reaction.  At the last minute, Dr. Brown included lamb as a potential protein in his diet.

My sister said it best with, “Maybe he is supposed to be a vegetarian,” when Brian showed a strong reaction to the lamb.  Now all we have left to hope for is chicken, which won’t be trialled for quite a while still.

A negative reaction to white potatoes and lima beans means we have two more potential foods to try over the next couple months.  I knew going into the appointment that I wanted to add white potatoes, but I won’t decide on the second food (either bananas or lima beans) until we return home.

Once we knew the foods to try, the nutritionist came in to discuss Brian’s current input.  He is far below the caloric intake she would like for his formula.  In order to increase calories, each bottle must now be six scoops of formula to eight ounces of water, concentrating it even more than before.

If over the next couple months Brian does not increase in weight or begins to refuse his formula, then a feeding tube will be discussed.

Before we left, we had an appointment on the books for February 11 with the EoE clinic.  Brian will have another endoscopy a few days before the appointment to see if his new foods are causing an eosinophil reaction.

We left the appointment and headed straight to the FOP Lodge, where I knew I could get my hands on fresh french fries.

Through this whole process, Brian has consistently asked for one thing…french fries.

I put the order in (side note…the nutritionist is not worried about the oils, as long as he doesn’t react) and Brian began to demand that I “go get them, now!” over and over until the fries finally arrived.

Saying that Brian morphed into a different child is an understatement.

A huge smile took over his face as he began to shovel fries into his mouth. Suddenly, he was full of kisses and hugs for the people around him.  He climbed up to his game at the bar and graciously shared his fries with Uncle Neil, along with everyone else who stopped to fawn over him.  People who have watched for the last three months were amazed as Brian babbled endlessly and jumped into the photo booth for multiple picture opportunities.

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It is amazing what a basket of fries can do.

At the end of the night, Brian even allowed Mr. Thom to put him in his carseat.  For the first time since we met in August, Mr. Thom was speechless.

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Thumbs Up for French Fries!!

It was the perfect way to say goodbye to the men and women who have gone above and beyond to make us feel at home.  I am going to miss all of them more than they know and will be counting the days till I can see them in February.

Now, Kelly and I are checked in for our flight tomorrow morning.  We are going to take one last tour around our grandparents’ neighborhoods and visit with family tonight before boarding a plane very early Friday.

It feels like Brian and I have been here forever.  I cannot wait to return home, but it is bittersweet to say goodbye.

But, like I told my cousin yesterday, we will be back.

This is not goodbye, just see you soon.

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Control

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I get it.

I am not in control.

I thought I had everything planned out perfectly.  I guess I became too confidant, because God reminded me that I am not calling the shots.

Brian was supposed to be having an endoscopy this morning.  Unfortunately, he came down with the early signs of a sinus infection the beginning of last week.  Still optimistic, I took him to an Urgent Care.

I left the visit stocked with the necessary over-the-counter remedies to combat Brian’s cold and an assurance that he would be fine for his scope.

Then Friday morning he awoke with a high fever.

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I gave him Tylenol and monitored him throughout the day.  His cold was gone, but the fever was persistent.  When he awoke Sunday morning, his fever was high and he complained of a pain in his neck.  Unlike previous illnesses, I could feel that one lymph node was larger than the other and it hurt him when I touched it.

We jumped into the car and headed to the emergency room, where they told me to continue to monitor his fever and the color and size of his lymph node.  Secretly, I was holding out hope still that he would be ready for his test today.

When the nurse called to give me prep instructions yesterday, I had to tell her about his fever.  After discussing it with a PA, it was determined that the best course of action was to delay the endoscopy till Friday.

Now everything is thrown off.

I had it planned out perfectly.  The test was today, doctors’ appointment next Wednesday, with the results, and flying home on Friday.  I’m starting to think I jinxed myself by reserving plane tickets.

Of course, as I suspected, Brian woke this morning fever free.  I have kept him inside to avoid the rain and chill outside and to protect him from any other health issues before Friday.

Brian will undergo his fourth endoscopy on Friday to determine if he is allergic to the apples and pears (mostly apples) that he has been eating the past two months.  If the test comes back negative, I will be able to continue feeding him apples and add a couple new foods to the regimen.  If it is positive for eosinophils, then apples will be removed from his diet.  Then we will repeat this whole process all over again in two months.

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I will meet with his allergist and nutritionist next Wednesday, the 18th (please pray the results are in by then), and we will put a plan in place.  I looked over the possible foods and have narrowed down my list. The nurses will perform skin tests to make sure the possible foods are safe, and then we will begin trialling them one at a time.  His allergist will schedule a follow-up endoscopy for late January, and Brian and I will return to Philadelphia to see if he is reacting to the new foods.

Then, on Friday, November 20, Brian and I will board a very early flight to return home.  Thankfully, my amazing sister is flying out here to help me get everything organized.  We have been gone for twenty-two weeks (twenty-three when we leave finally)…154 days…over five months.

I am ready to go home.

While Brian entertains himself with trains, cars, and other toys, I am doing my best to start packing away the items filling our hotel room.  I have suitcases half packed, boxes to donate, and boxes to ship.  It would be a lot easier if Brian would stop unpacking the boxes and suitcases, though. 🙂

Some think I am crazy, but I will be hosting Thanksgiving the week after I return and my annual “Candles, Christmas and Cocktails” open house the week after that.  I cannot wait to see my family and friends through those two events.  Hopefully, I will begin to feel more like myself.

Last night, Brian clung to my arm while he slept.  It is hard to imagine not sharing a bed every night when we return home.  Believe me, I am thrilled to put Brian back in his own bed and have as restful a night sleep as possible, but I’m also terrified.

Brian and I have found a comfortable routine to our days and nights.  We only need to worry about each other.  Bringing Matt and Addi back into the mix will be difficult at first, but I know we will find our groove before long.

I am excited to be home in time for the holidays.  This is my favorite time of year and I savor the time with my family and friends.  I am missing out on far too many things happening at home, and I know home is where I need to be.

Still, Brian and I have a plan.  Unless I find another option, we will return to CHOP every two months for endoscopies and follow-ups with his allergist here.  We will continue with the plan, and hopefully, things will begin to fall into place.

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Of course, I have his birthday planned out already.  It may upset family members, but Brian’s party will be all about Brian.  I will only serve food he is allowed to eat, which may make for an interesting selection.  Brian will not be able to partake in Thanksgiving and Christmas delicacies, so his birthday party will be just for him.  I would do anything for my Little Man.

Thank you to our family and friends for supporting us along the way, the FOP in Philadelphia and their president for adopting us and taking us under their wings, Mr. Thom for treating Brian like his grandson and spoiling him rotten, those who have hugged me when I pretended to be strong and given me more credit than I deserve, and for all the love from across the world.

Thank you, God, for reminding me that I am not in charge, and helping me to never forget just how blessed we are.

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Halloween

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With Halloween a mere three days away, it is time for me to explain why The Teal Pumpkin Project is so important to our family.

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Anyone who has been reading this blog or knows our family, understands that Brian suffers from multiple food allergies.  One of his worst, requiring us to carry an epi pen and steroids wherever we go, is dairy, but soy is not far behind.

Although Brian has been diagnosed with Eosinophilic Esophagitis (EoE), food allergies, and potentially Chronic FPIES, these are only a few bricks in the massive institution that makes up food allergies.

In fact, my niece suffered from FPIES the first couple years of her life.  Potentially life-threatening reactions occurred whenever she had anything with rice or oats in it. Thankfully, she has outgrown the condition, but that cannot be said for millions of children around the world.

The Teal Pumpkin Project was launched just last year.  Being new to the world of food allergies, I jumped on the chance to provide a safe alternative for children like Brian.  While my intentions were good, the execution was the not the greatest.

I had no idea how hard it would be to find a teal pumpkin (I thought for sure a plastic one would be found at Target or Walmart).  With Halloween drawing near, and feeling defeated, I purchased a fake pumpkin and some teal spray paint.  It may not have looked great, but it served its purpose.  I also bought a special container and filled it with “non-food” treats like vampire teeth, spider rings and miniature tubs of Play-Doh.

Essentially, that is what this program is about in the simplest terms.

Not all children can enjoy candy for any number of reasons.  Anyone who has a child in school knows that most schools have put a kibosh on ANYTHING containing nuts.  The same caution has to be used when selecting Halloween candy.  Otherwise, millions of children end up disappointed at the end of the night, skip Halloween altogether, or worse yet, suffer sever allergic reactions.  The Teal Pumpkin Project offers alternative “non-food” options for children so that they can have a Happy Halloween with the rest of the trick-or-treaters.

Last year Brian missed out on Halloween because he had his first endoscopy and colonoscopy earlier in the day.  The year before that he was too young to have any idea what was happening, and I gladly took the few pieces of candy he received.

I want this year to be different.  I want Brian to enjoy trick-or-treating as much as his sister.  I want him to be able to take pleasure in the “treats” he receives, just like any other kid.

Although it was new last year, (pretty sure we had the only Teal Pumpkin in my friend’s neighborhood) the movement has taken the world by storm.  FARE’s website (Food Allergy Research and Education) encourages households to “Take the Pledge” and even has a map showing areas across the US who are participating, with almost six thousand signed up so far.

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Of course, there are thousands more who have not signed up on the site, but have done their part to spread the word.

Stores across the US are selling Teal Pumpkins (by the way, a Teal Pumpkin is the universal symbol now that you are offering a non-food alternative) and various organizations, like Trunk or Treat groups, are encouraging participants to include a Teal Pumpkin and alternative options.  The media has caught on to the growing support and featured the story on news stations in multiple states.

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Although Brian and I will not be participating in our Annual Halloween Traditions, I know that our friends and family are leading the charge for us at home.  My “second mom” has assured me that a Teal Pumpkin is ready to go and Matt has an array of items to pass out to trick-or-treaters.

All this being said, I am not against passing out candy.  In fact, a bowl of candy will sit right next to the non-food bowl.  I humbly am asking for you just to remember children like Brian when you purchase your candy this year, and maybe pick up a few fun items to hand out also.  Party City, Dollar Tree, 99 Cent Store and Oriental Trading, among many others, offer great prizes for minimal cost.

It may be an extra $20 out of your pocket, but the rewards are priceless if you can help keep Halloween fun for all kids.

Even though Halloween is approaching quickly, if you can find the time to paint a pumpkin teal and pick up some non-food items, you will have my eternal thanks.  In fact, I encourage you to share pictures of your Teal Pumpkin if you do participate.  I know I will make sure to take a picture of every Teal Pumpkin I see while out with Brian.  Hopefully, we will not be disappointed.

Also, as a side note, if you find yourself searching for a last-minute costume, I encourage you to shop at Spirit Halloween.  At Children’s Hospitals across the country, Spirit sets up a “fun area” where inpatient children can pick out a costume, goody bag, toys and do crafts.  Although Brian was not able to leave his hospital room when they were at CHOP, I was able to pick him up a police officer’s costume.  It is an amazing program, and brightens the faces of the patients.

Brian and I continue to prepare for Halloween’s arrival.  Our hotel room has tiny pumpkins in it (safe as long as he doesn’t touch the insides of the pumpkin), and I have a few costume options available for him to choose on Saturday.

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I always have enjoyed Halloween, and with The Teal Pumpkin Project’s growing awareness, I am optimistic that Brian will too.