Motherhood

“Being a full-time mother is one of the highest salaried jobs…since the payment is pure love.” ~ Mildred B. Vermont

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“I love you, mommy,” just might be the most wonderful words in the English language, if you are a parent.  Brian only recently began uttering this entire phrase.  In the past, whenever I would tell him I loved him, he replied with “I too.”  Thankfully, he has not given this response up, but simply added the longer version to his arsenal of things that melt my heart.

In my life I have held many different jobs and played many different roles, but none of them are more fulfilling or gratifying than being Addi and Brian’s mommy.  They are my heart and soul and I would travel to the ends of the Earth to ensure they are happy, healthy and safe.

That being said, I am far from perfect.  I try my hardest, but sometimes the days can become overwhelming.  One thing I have realized during this adventure is that even when you have people surrounding you with love and support, it is still possible to feel utterly alone.  More importantly, I have learned that is an okay feeling to have.

“I’ve learned that every day you should reach out and touch someone.  People love a warm hug, or just a friendly pat on the back.” ~Maya Angelou

I am grateful to those who check in on us and encourage us to participate in different events.  Luckily, on the days when it is just Brian and me, he helps to combat the loneliness.

When alone in the hotel room, we have spinning wars (he always wins, as I am much too old to spin that much), hide and seek, play cars and run back and forth between the rooms.  If you were to listen in, you would hear Brian yelling, “Hey!  You come back here!” or “Do it again.”  Just now, Brian found the greatest joy in jumping up and down on packing “bubbles” that came in a care package from an amazing friend.  He doesn’t even know there is another sheet, but I’ll try to save that one for another time.

As hard as it is for Matt and my family at home, I am loving the relationship Brian and I are building, even though he doesn’t want to let me out of his sight.  I’m sure this will prove challenging when we return home, but that is one of the many bridges I will cross when I get there.

As for now, we turn our attention to ten days from now when Brian checks in to the Children’s Hospital of Philadelphia for tests.  Every day I pray they will provide answers and, as crazy as this sounds, provide validation for the three months we have been away.  I pray that he makes it through the anesthesia with minimal to no side effects, and I pray that I have the strength to hold it together.

Thankfully, I will not be alone.  In addition to the hundreds of family, friends and strangers who are offering us prayers, well wishes and strength, I feel incredibly blessed because my best friend will be my side.  She just might hurt me for publicly saying these things, which is why I will leave her name out, but like I have told her many times before, it always has been her.  She gets me in a way no one else does and when I am at my lowest, she can pull me up.  In addition to the very, very long list of thank you’s to those who have helped along this journey, I will never forget the sacrifice she is making to be here with me and her sister for helping to make it possible.

I have been through these tests before and a couple times by myself, but this one is big.  Because Brian reacts differently every time he comes out of the anesthesia, I am scared of what he will do this time.

Along with being scared, I am hopeful.  Hopeful that the diagnosis will come with options and solutions for the future.  Hopeful that my son will have a chance to eat again.  Hopeful that I will return home soon.

I believe this is what motherhood is all about, though.  Sometimes things are scary, sometimes we hurt like hell, and sometimes we use the very last bit of strength within us to be strong for our children.  Whenever I was sick or hurting, I used to ask my mom to “make the bad man stop.”  She reminded me that it is my turn to “make the bad man stop” for Brian.

As parents, we live and breathe for our children.  Still, as I have learned through this journey, I hope others see that we do not have to be strong all the time, but no matter what, we never give up.

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“Gratitude preserves old friendships, and procures new.”

Thank you again to everyone who reads each of my ramblings, reaches out, and includes us in their events, thoughts and prayers.  I know how blessed we are to receive your help and love, and I know how blessed I am to be Addi and Brian’s mommy.

Now it is time to chase a little one off to bed with lots of kisses and love you’s.

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Stalemate

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Since my last blog, I have removed lotion and body wash that includes dyes, fragrances and any food products.  The idea was that these items were causing Brian’s skin to react in a negative manner.

Sadly, it has not seemed to solve the problem.

Brian’s arms, legs and now his face (mostly on one side) are covered in a rash.  Upon initial examination, I might believe it is eczema and treat it accordingly, but it is not acting in the same manner as pervious eczema flare ups.  In fact, the only dry or rough spot appeared yesterday below his eyes, where the skin began to peel.

My fear over putting anything on Brian’s skin grew yesterday when I opted to keep him inside rather than risk putting sunscreen on him.  I know there are safe options out there and we do have the kind recommended by his doctor, but I am wondering if his poor skin needs a break.

After speaking to the allergist office again today, the nurse seemed stumped.  She said we could try purchasing our own sheets and towels and then wash them in safe detergent, but there is no guarantee it will make things better.  At this point, there are few definitives they can give me.  Rather than spending money on bedding and towels, I will first give the hotel’s offer of washing our things separate and in hot water a try.

This coincides with a visit to the gastroenterologist today.  He requested that I continue using Miralax on a regular basis and decrease the dosage to half a capful a day.  While this may still cause Brian to have extremely loose stools, the doctor is not concerned as long as they don’t total too many in one day.  I hate to think of what my baby’s poor little bottom will look like when this is over.

The allergist had placed Brian on Nexium once a day to combat the choking/gagging and episodes of bile, and the gastroenterologist decided it would be best to take that prescription and break it into two dosages a day.  He wants Brian to take the Nexium mixed with water on an empty stomach.

These orders seem simple enough, but these days, a bottle is never far from Brian.  The only time I could guarantee an empty stomach is during the early morning hours.  In addition, Brian has been “burned” before and is very suspicious of anything we give him.  While eating lunch at the Philadelphia FOP last week, he was given a cup of ice water with a lid on it.  He wouldn’t drink from it until I demonstrated first and showed him what was in the cup.

With this in mind, I began racking my brain on the drive back to the hotel, trying to figure out the best way to administer this medicine.  Brian’s water cups are on the way out and tend to leak all over him when he is trying to drink.  I decided that I would get him a new cup and hoped that by encouraging him to pick it out, he would be more inclined to drink from it.

We stopped at a CVS and I showed him many different options.  He chose one that some may consider to be too “young” for him, but at this point, if he will drink from it, I don’t care what those around me may think.  We returned to the hotel and I cleaned his cup, filled it with water and Nexium, and then added some ice for good measure (he is a bit of a prima donna when it comes to his water).

Sadly, as of right now, it is not working.  He asked for a bottle instead and since he is in need of more calories today, I don’t want to say no.

Side Note: Brian’s weight has remained the same since the last visit to the doctor on July 30, although he is slightly taller.

Over the next few days I will become more creative and somehow I will get him to take the medication.  I want the doctors to have everything they need in place when it comes time to perform his endoscopy and colonoscopy on September 10.

In fact, I asked the doctor if we were still on track for his procedure.  He assured me we were and would continue to be unless more issues came up in the next week.

I am frustrated still and wish I knew exactly what to do to help Brian.  Luckily, he is  a happy kid.  Although we have episodes once a day or so where I can tell he doesn’t feel well, for the most part he is the greatest person to be around.

It is easy to keep Brian happy when we are surrounded by such caring individuals.

Yesterday Brian was invited to throw out the first pitch at a whiffle ball tournament fundraiser hosted by the Custodes Pacis (Guardians of Peace) at the FOP.

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Brian had a great time and I was again humbled by the love and support I am receiving from these amazing individuals.  I have been fortunate to spend time with one of the members lately and told Matt that when this gentleman left yesterday, I found myself wanting to beg him to stay.  They have put me at ease and I feel right at home with them.  I don’t know the last time I met a more wonderful group of individuals and I look forward to spending more time with them in the days ahead.

These angels will be my salvation as I wait anxiously for Brian’s tests and the inevitable results.  I thank them for encouraging me to participate in events and forcing me to join the outside world.  I know I have said it before, but thank you will never be enough and I don’t know that they will understand just how much they mean to me.

Over the next few weeks I will encourage Brian to take his medicine, drink his bottles, and do my best to heal his poor skin.  I appreciate everyone who sent me suggestions for products and have reached out with words of encouragement and support.  Matt and I will continue to do what we can to thank you and keep you updated along the way.

We love you all.

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Frustration

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My sweet angel…

I am frustrated.

Brian’s body is working against him and I cannot stop it.

I knew when we began this journey that removing food from his diet was the best solution.  It has been three weeks and now I am learning that I need to remove even more.

This past Saturday Brian developed a rash on his legs, arms and stomach.  Over the next couple days, it has dulled and brightened while also traveling to his face.

Brian’s “team” of doctors consists of an allergist, gastroenterologist and nutritionist.  When something happens, I find it is best to contact the nutritionist, who then sends the information out to the responsible parties.

I called and left a detailed message with all of Brian’s symptoms (rash, bowel issues, choking/gagging and spitting up bile).  Each concern was then directed to the appropriate party.

Today I heard back from the allergy department.

She instructed me to remove any lotions, body washes, bubble bath, shampoo, etc. that contains any food additives, fragrance or color.

Apparently the Aveno Baby Eczema lotion is doing more harm than good.

She told me that because Brian has issues with many types of food, it is possible his skin is equally sensitive.

Yesterday I felt like mother of the year when I found SpiderMan bubble bath…today I just feel defeated.

Brian and I embarked on a walk to the two closest stores to our hotel (CVS and a grocery store).  I spent a very long time looking over all of the lotions, body washes and shampoos.  It amazes me the junk that goes into these every day staples of our lives.  I was not able to find a shampoo that contained all the necessary qualifications, but I did find lotion and body wash.  Hopefully these will be a good place to start.

Tomorrow I will venture a little farther and try to find a Trader Joe’s or other health store that may sell shampoo that is safe for him to use.

Honestly, I feel like everywhere we turn, something else attacks.

Matt joked that Brian really is a “bubble boy.”  That thought makes me want to cry…and I have…let’s say it hasn’t been a great day.

I want Brian to be a happy, normal child, and yet now I have to monitor what touches his skin, and not just what goes in his mouth.

This has brought up an entirely new list of concerns, including his clothing and bedding.  If his skin is reacting to a wash, then the detergent used to clean his clothes will be an issue, as well.

What frustrates me the most is that these were not issues prior to removing the food.  I am confused by the old and new symptoms and want nothing more than for someone to give me answers.

While walking I stumbled across a used book store.  Those who know me know there is nowhere in the world I am happier than in a book store.  I don’t know if it was driving across the Whitman Bridge the other day or some divine presence from my college days, but I felt compelled to walk inside and ask for a copy of Leaves of Grass by Walt Whitman.  This book brought a sense of calm when I was younger, and hopefully it will do the same now.

For now I wait to hear back from the gastroenterologist and hope they can give me more answers, which will lead to more questions.

Until then, I hold Brian in my arms while he watches whichever cartoon has his fancy (Buzz…Minions…Mickey), and read.

I know peace will come.  I hope it doesn’t take too long to find us.

Life

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It is not easy for me to explain what seeing Addi and Matt meant to me.  The past five days were a blessing.

I had grandiose hopes of surprising Matt right outside of the security checkpoint, thanks to the airport police, but unfortunately, my GPS chose that day, of all days, to not cooperate.  After driving in circles for thirty minutes while it “rerouted,” I received a text from Matt that they had landed…twenty minutes early.

Our initial reunion did not play out like I had in my mind, but that doesn’t make it any less meaningful.  I fought back tears of happiness as I hugged Addi and Matt and said a silent thank you to everyone who made the reunion possible.

After making it back to our vacation retreat (GPS decided to work), it felt like we were picking up right where we left off.

Matt and Brian broke out in a serious tickle war, which ended with Brian, way too zealous to tackle Matt, smacking his mouth and cutting the inside of his lip.  It took a little bit to calm him down, but it didn’t dampen our excitement.

Maybe things did not go as planned, but isn’t that how life is?  I’ve always loved the quote, “If you want to hear God laugh, tell him your plans.”  I don’t think God was laughing at us, but maybe just reminding us that he is the one in control, not us.  (Does anyone else sense a theme here??  God, I KNOW you are calling the shots!)

We did a little sight seeing, but for the most part, we just spent time together.  Also, thanks to the generous and amazing support of the Philadelphia Fraternal Order of Police, Matt was able to help Brian and I move in to our new residence.

The whole visit was just what Brian and I needed on our end, and I hope Addi and Matt left feeling the same way.  I’m still exhausted, but I feel a renewed strength to face the unknown and possibly very long road ahead.

Brian has been free of food for almost three weeks.  I was over the moon when he began to have normal bowel movements shortly after removing food, but then they turned to constipation.  The GI department suggested one cap of Miralax a day to help with the problem.  After one dose, we had the opposite problem and were dealing with pure liquid, multiple times a day.  Without the medicine he goes a couple days without having a bowel movement.  I tried to lower the dose, but still ended up with the same problems – drastically changing from one extreme to another.

In addition, last week Brian woke up gagging and chocking.  He spit up a little bile, but the act was loud enough to alert another mom in the house where we were staying that there was a problem.  We both came running to check on him.  He spit the bile in my hand, swallowed a few times, and then fell back to sleep like nothing had happened.

I called the doctors again and they recommended starting Nexium and that an X-Ray of his stomach might be necessary to determine if there was a back up causing the constipation.

Then last Friday Brian began choking on a drink of water causing me to quickly pull over the car on the side of the highway and check to see if he was okay.  The same thing has happened twice today (once while drinking and the second while just standing still).

As if bowel issues and choking were not enough to deal with, Brian also developed a new rash yesterday on his arms, legs and stomach, which has grown worse today.

I’m hoping no one will fault me for saying I am confused and frustrated by these issues.

My research and discussions with doctors say that once food is removed, these symptoms should begin to disappear, not increase.  Then, after hearing the saddest “please” in his very hoarse voice, my heart broke.

I would do anything to help my little man feel better, as shown with our move across the country.  I know tomorrow will be filled with phone calls and questions.  Sadly, I do not think that we will make it to September 10 before having to see a doctor again.

In an effort to lighten my sadness over Matt and Addi leaving, I bought some flowers and placed them in the only container I have…a Spiderman cup.  Brian jumps up on the chair to smell the flowers every chance he can.  They make things feel a little more “homey” for me.

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Tonight, when Brian is asleep, I know the tears will fall.  I miss my family and my home, but I know how blessed we are to have so many people looking out for us and taking us under their wings, especially the Philadelphia Fraternal Order of Police.  I hope those guys are prepared for Brian and I to show up at the lodge far too often, because I do see it as a home away from home.

Even when my emotions get the better of me, God has a way of showing that Brian and I are never alone; whether through a phone call checking in or a package reminding us other are backing us up in this fight.

Today, “Brothers for Brian” bracelets arrived.  I don’t know if I will take mine off, and Brian prefers to load as many as possible on his arm and then fling them around the room.  If anyone would like one, please do not hesitate to send me a message and I will make sure one is sent off immediately.

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I speak to our family, friends and strangers when I say thank you for making a reunion for our family possible.  Thank you for finding us a place to live.  Thank you for just being there.

A Family Reunited

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Thanks to the help of so many friends and family, after 8 1/2 long weeks our family was brought together for five glorious days!  The help and financial support has been so overwhelming that the words in a blog will never be thanks enough.  It is appropriate that we are in the city of brotherly love as my brothers from Alpha Kappa Lambda, the FOP, PLEA and the department have stepped up in their support.

Recently, I was diagnosed with a new condition.  As many of you know, I have severe allergies related to my EoE and I am always clearing my throat, sneezing, coughing and blowing my nose.  So, I was explaining to Erin my strange symptoms…I had watery eyes, a runny nose, but no cough.  Also, my stomach felt “strange.”  Erin was able to explain to me that it was “emotion” and the diagnosis was “gratitude.”  So I am apparently not dead inside!  In all seriousness, while I have experienced tears of sorrow, I have also experienced many more tears of joy of late.

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I am not on Facebook, Twitter, Linkedin, Tinder, Farmers Only, or any form of social media.  In fact, I have taken procedures in the past to remove much of my information from the interweb.  In this instance though, I felt some explanation, or opening up was appropriate, especially for those who have’t seen us in a few years or don’t event know us.  I do this so you feel comfortable in your financial support for our situation.

So, I want everyone to know that we live a humble existence.  Yes, in the past, mainly when I was single, I owned a restored 65 Mustang and a couple of motorcycles.  Those items are long sold to support our family and I have no regrets about it.  We live in a home built in 1978 that has never been renovated.  Erin drives a 2001 Expedition and I drive a 1995 Bronco.  I perform as many repairs on the home and vehicles as my knowledge and tools allow (thank goodness for youtube and Uncle Lanny!).  I paid off my student loans six years early, and our debt consists of a mortgage, Catholic school tuition, and credit card bills related to mostly medical expenses.  We are a single income family and will have to be until Erin can home school Brian to an age that he can protect himself from dangerous foods and join his sister at St. Simon and Jude.

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I say this to let you feel satisfied in your generous donations.  I do not say this to complain because we are very, very happy.  We are keeping our troubles in check and remember there are many people and families in tougher situations than ours. We are reminded of that first hand as there are many families in our hotel that have children being treated at CHOP.  So many of you have stepped up for our family and we feel so lucky and blessed.

As I write this, I am feeling “emotional” and it feels good.  I believe that Erin and our wonderful kids have brought such good fortune to us as I feel I do not deserve the outpouring of affection bestowed upon us.  Thank you to all and believe me, we will be paying forward the good deeds paid to us!

Matt

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Two Weeks

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Tonight marks two weeks since Brian had solid food.

During this time, he has been enjoying highly concentrated bottles of formula and water.  Most days he may drink four 8oz bottles, and others, I’m lucky if I can get him to drink five.

I knew going into an elemental diet (formula only) would be difficult, especially when Brian is around other people.  Last week, Brian and I were alone and it was easy to hide food from him.  Over the last few days, we spent some time with friends I’ve known since I was a child and their little ones.

This is the first time since we arrived that Brian was around kids closer to his age.

The food issue was tricky at times, but for the most part, we worked out a system.

When it was time for the kids to eat, Brian took a nap, a bath, or watched a movie.  We did our best to not eat in front of him and tried to explain to a three year old why she couldn’t show him her snacks.

Overall, it was a great lesson for me.  I cannot keep Brian away from food all the time.  So I will do my best to keep him distracted and attempt to make drinking a bottle exciting.

In addition to our food struggles, Brian has been dealing with a horrible eczema outbreak on his legs and arms.  Before, doctors told me it was due to his EoE and eating something that caused a flare up.  I don’t know how much I believe that considering he isn’t eating anything.  If nothing else, it points back to the EoE diagnosis and that his poor body is doing everything it can to process what is happening.

I have mentioned many times how fortunate Matt and I are to have some amazing family and friends.  We can feel the showering of support you are sharing with us and the prayers from all over the country.  It means a lot to us to have so many people care about our family.

But tonight, I am unable to express how grateful I am to the family and friends who are making it possible for our family to be reunited.

In one hour Matt and Addi are landing in Philadelphia and my heart feels like it may burst with excitement.  Just now Brian asked if we could go get sissy and daddy.  I think he is as anxious to see them as I am.

Our family reunion will be brief (Addi starts school on Tuesday), but we will make the most of every moment we have together.

So for now, I am signing off to spend time with those I love the most.  Thank you for your support and continuing to follow our story.

Angels

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Do you believe in angels?

I do and I always have.  For years I have collected angel figurines and have them on display in my room (Matt hates this – he thinks they are watching him).

Maybe Matt is right and the angels are watching him.  I know they have been watching over all of us lately.

Alabama’s song, “Angels Among Us,” has been a favorite of mine for as along as I can remember.  It’s beautiful message acknowledges that angels are not just ethereal beings, but also may be the people we come in contact with everyday.

Right now my family and I are surrounded by angels.

I believe the doctors trying to figure out what is going on with Brian are angels.  They refuse to take anything at face value and are doing what they can to ensure a better way of life for my tiny human.

I believe our friends and family are true angels for all the support they are showing us financially, emotionally and physically.  We are lucky to have some of the greatest friends in the world and I hope I can live up to the example they are setting.  Our family, immediate and extended, never cease to amaze me.  I am not trying to be sappy when I say I do not know what I would do without them, any of them.

And today, I am thankful and blessed to be supported by the angels of the Fraternal Order of Police in Philadelphia.

When Matt and I married, his sergeant at the time (who introduced us), spoke at our reception about the merging of families.  He pointed out that we weren’t just joining the Sweeney and Morgan families together, but that I was also now a member of the police family.  Naively, I thought he meant just Phoenix.  I now know just how strong the “Blue Family” is.

Across the many miles, the FOP in Phoenix and Philadelphia have offered their support, and as hard as I try, I cannot find the words to thank them and everyone else in our lives properly.

Thank you for reaffirming my belief in angels.  Thank you for supporting a family you know or were just introduced to.  Thank you for checking in on us.  Thank you for the hugs.  Thank you for your love.

Thank you, God, for sending your angels.

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Silver Linings

Yesterday was a big day for my little man.

First off, he got to spend the whole day with his “Uncky B.”

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Secondly, Brian has been on a formula only diet since Thursday morning, and yesterday, he had a normal poop.

This may not seem like something to be excited about, but if you remember from an earlier post, the number of normal poops he has had in his lifetime is minimal to say the least.

While I am over the moon that his poor bottom is receiving a much needed break, my excitement is hindered by the thoughts that creep into my over analytical mind.

There is the obvious, that being on just formula is helping him.  Then there is the fear  and questions, wondering if maybe he has been reacting to the foods we thought were safe for him.  My bigger fear is the question, “Is he allergic to all food?”

Believe me, that is the absolute last thing I want.

It doesn’t help that an article in People magazine is making its way around Facebook and other sites about a nineteen year old boy in Utah, who is allergic to all food.

I don’t want to jump to worst case scenarios, but after two years of variations of diarrhea, it does make you think.

This new diet of Brian’s brings interesting actions on my part.  I do not want Brian to see me eating, especially anything he may have had in the past.  I try to sneak food or eat something I know he would never ask to have because he has never had it before.  This makes for a very curious diet for me.

But the last thing I want to do is listen to him cry when I say he cannot have what I’m eating.  So I adapt; and I buy distractions from the dollar bin.  It is amazing how a pair of Teenage Mutant Ninja Turtle socks can capture his attention and make him forget about his food request.  I then place a new bottle in his hand and hope he drinks it.

This hope mostly is because he is supposed to be drinking a minimum of six, highly concentrated, 8oz bottles a day.  So far the best I have done is four.  Hopefully as the days progress, that amount will rise.

It is amazing the struggles or “mountains” that appear in our paths.  I believe that God has a purpose and a plan, and that someday this will all make sense.

This morning I had the unfortunate experience of falling down the stairs.  As I sat on the ground, crying tears of frustration, Brian came around the corner.  He took my face in his tiny hands and said, “You okay, mom?”  I smiled and pulled him into my arms.

Perhaps I have been focusing too much on the difficulty of our current situation and it took falling down the stairs for God to subtly remind me that I have everything I need in the unconditional love of my son.

I am okay, Brian, and you are my silver lining through all the difficulty.  There may be hard times and struggles ahead, but God gave me the most unbelievable gift of being your mommy, and even if I have to fall down the stairs once in a while to be reminded, my primary focus will be to make sure YOU are okay.

I love you, my sweet boy.

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Meeting with Doctors

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I feel I should start this post with an apology.

I’m sorry I didn’t post immediately with the information I received from the doctors.  I’m sorry I have not been quick to respond to messages and phone calls.  In some ways, I’m sorry I’m not stronger.

It wasn’t the plan the doctors put in place that made Thursday a rough day.  In fact, I was prepared for this plan.  Instead, it was talking to Matt and coming to the realization that two months are turning into four.

I am grateful that Matt had the strength to write what he did.  He told me I should post something and I said I couldn’t, not yet.  Besides, what I am about to write is technical.  Matt spoke from the heart of what we are both feeling right now.

Through this entire process I have been worried about meeting with the doctors.  My biggest fear was Brian and I would be dismissed, like has happened before.  Thankfully, that was not the case.

The doctors (we met with an allergist, gastroenterologist and nutritionist) agree that something is wrong.  Unfortunately, they do not feel that the diagnosis of Eosinophilic Esophagitis alone is accurate.

When Brian had his first two endoscopies and colonoscopies, the doctors did not place him on an acid reducer for a significant amount of time before the tests.  In order to have the most accurate test results possible, and because Brian refuses most medications, the GI specialist decided to place Brian on an elemental diet for the next four to six weeks (actual time will be determined when I talk to scheduling on Monday), which consists of a minimum of six 8oz bottles a day of highly concentrated formula and water only.  At the end of this time frame, Brian will have another endoscopy and colonoscopy.  The hope is that the biopsies will show an accurate reading and his esophagus will have a chance to heal.

This decision did not surprise me.  I knew that this was the strongest possibility and, honestly, I expected it to be a longer time frame.

Our biggest problem right now is that Brian is showing so many symptoms, and not all of them are consistent with EoE.  When he breaks out in hives, vomits or has diarrhea, those are signs of something else.  It is possible that in addition to EoE, he also has regular food allergies, Eosinophilic gastroenteritis and/or FPIES.  Hopefully, by eliminating all food from his diet, the doctors will be able to pinpoint the causes for his symptoms.  The one thing they can agree on is that there are multiple things wrong, and they are going to figure out what.

Hearing all of that was the easy part.

I knew he would have to have more tests and I knew there may be cause for us to go back and forth, but I really didn’t want to acknowledge the possibility that we are not coming home anytime soon.

This is where I wish I were stronger.  I wish I could tell you that I took the news and steamrolled ahead, but the truth is I fell apart.  Luckily, Brian was snuggled up next to me sound asleep, so I was free to just let it out.  It was helpful.

If you message or call, I cannot guarantee that I will respond immediately or that I won’t burst into tears during the conversations, but please know how very blessed I feel to have each and every one of you, and do not stop reaching out.  All of the support for Brian and me here and Matt and Addi back home is…I cannot think of the right word to describe it…

Maybe love works best.  You are showing us an outpouring of love and that is what will help us bridge the gap of miles and time.

We love you, we are grateful for you, and we are not ashamed to admit we need all of you and your prayers and strength to get us through this.  Saying “thank you” will never be enough.


Side Note:

Happy birthday to the greatest husband and daddy in the world.  Brian will give you a big hug soon.  Love you.

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