Travels

ROLLERCOASTER RIDE

After the official diagnosis, our rollercoaster ride continued.  Although we were thrilled that we finally had a diagnosis, it also meant, we had a diagnosis.  This rare disease and everything that came with it was scary, and downright devastating at times.  I did the worst thing possible and scoured the internet looking for something, anything to tell me what the heck was going on with my son.  I ended up scaring the crap out of myself and the more I looked, the scarier it got.

Okay, so enough with that.  But what came later also wasn’t fun.  Our family definitely felt different and I began to feel like we were on our own island.  It was lonely and depressing at times.  This was so not what I wanted for our son.  I think I felt my American dream for Brady slowly fizzle and what was left was anger and disappointment.  Like most parents who have been dealt similar cards, I had to ask, why Brady?  Why my son?  This beautiful, innocent little boy that was forced to battle food every single day. 

Not long after diagnosis, I came across the following excerpt entitled, “Welcome to Holland.”  This was written by Emily Perl Kingsley in 1987.  This spoke to me on so many levels and still does. 

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. 

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

ACCEPTANCE

I can safely say that I have gone through the four stages of grief and well on my way to the fifth, acceptance.  Holland isn’t so bad.  Most days.  And as for that all American dream I had for my son?  It's still there, it just looks a bit different now.

The Long Road to Diagnosis

IN THE BEGINNING


Looking back on my pregnancy with Brady, I find it ironic that Brady’s life has mirrored what my 9 months felt like. Around week 7 of my pregnancy, the all-day nausea set in. I wasn’t one of those lucky women who didn't have morning sickness, in fact, I wasn’t one of those lucky women who only had morning sickness. I was sick all day-- morning, noon and night. By week 9, I was hospitalized for three days because I was so dehydrated from all the vomiting that I couldn’t even keep water down. Several highly skilled nurses couldn’t start an IV when I was first admitted, which was downright painful since I’m not a fan of needles. Eventually I was put on Zofran (a chemotherapy drug) for the remainder of my pregnancy to help control the nausea. It definitely helped, but I still vomited almost on a daily basis… for my entire 37-week pregnancy.






Brady came three weeks early. He was small for his age, weighing 5 pounds, 11 ounces. He had feeding issues from the beginning having issues with latching on and eventually with keeping his small bottles down. He lost weight the first week, dipping as low as 4.5 pounds. We had to go to his pediatrician’s office every 3 days for weight and height check-ins the first 3 weeks of his life. He eventually put some weight back on, but the growth was painfully slow. He was born in the 3rd percentile for weight and 10th percentile for height. To this day, he remains steady in those percentiles for both height and weight and Brady is now 4.5 years old.






From birth to 6 months, Brady would vomit regularly. His doctor said that was normal, yet he was never given an acid reflux medication. I was a first-time mother and really didn’t question his lack of diagnosis. The real fun began at 6 months when we started to introduce cereal. It was a tough transition and it took several weeks for Brady to get used to the new texture. He would occasionally projectile vomit, and again the doctor said this was “normal”. I didn’t question her, after all, she was the doctor, right? I have since learned to question EVERYTHING.






When Brady turned 9 months, the party officially started. We tried to introduce baby foods, stage 2 and 3. Brady started to violently projectile vomit (3-4 feet from his body) during or right after a meal. I remember the countless times I wiped down the walls around his high chair and mopped the floor. He would scream and cry at meal times and outright refused to self-feed himself. My husband and I quickly learned the fine art of spoon-feeding while doing a song and dance to keep him entertained and distracted enough to take a bite.
















At his 12-month check up, I voiced my concerns on the projectile vomiting issues and I was told, “He’s just having food texture issues.” End of story. I finally started to listen to my mother’s instinct and transferred Brady’s care to another physician at a different practice. I was quickly appalled when she said the same thing. I started to second guess myself, and started to think that perhaps I was overreacting. The second doctor wanted to use a “wait and see” approach. Three months went by, and still she didn’t think there was cause for concern. When Brady turned 18 months, we changed physicians for a third time and explained his story all over again. Painful. I was downright flabbergasted when she had the same approach as the other two… wait and see. I was so over “waiting and seeing” at that point. But I felt like I didn’t have a voice or a say. That what I thought, didn’t matter or count. I was so wrong.













SUDDENLY EVERYONE IS AN EXPERT


The first two years of Brady’s life, our lives were turned upside down. Brady had problems. We had problems. And suddenly our family started to look and function differently from other families. We also told our story… in a way of explaining why we couldn’t meet friends and family at restaurants or at their houses during meal time. We explained over and over again why meal time was stressful and painful time for our family. All I can say is blessed are those with children who enjoy eating. It would take me and my husband on average an hour to feed Brady each meal. Every last minute was full of stress -- worrying if he was getting enough to eat. Hoping and praying Brady wouldn’t turn right around and vomit up every last hard-fought calorie. The kitchen table clearly became our enemy. Even trying to get Brady to go into his high chair was such a nightmare. The kicking, screaming, and crying at every, single meal. And I’ll admit it, I hated every last minute of it. Every. Last. Minute.






I turned to family and friends, telling our stories of woe. Some would listen, offer hugs and encouragement. Others… well, they believed themselves to be an expert on the matter. I can’t tell you the amount of times I heard, “Do you think it could be this (insert crazy disease)?” Or, “Why don’t you try this? It can’t be that hard.” Or, “This is how you need to handle it. This will fix it.” Unfortunately, I learned my lesson a few times about talking of our world. The insulting diagnosis’ that would come out of some people’s mouth were appalling, especially when these people had no medical background. And unfortunately, I cut ties with a few of those who simply couldn’t understand and made the situation worse. I still get sad about a few of these burned bridges, but in the end, I learned that I needed to protect myself.










FED UP


Sadly, it took me another year until I was so fed up with the endless cycle of Brady’s vomiting, picky eating, and failure to thrive that I finally demanded Brady be referred to a GI specialist. He never had been put on any acid reflux meds or had any testing up to this point.






At age 2.5, Brady saw a GI for the first time. He immediately heard our concerns and thought that Brady needed to have further testing. Hallelujah! Someone heard me!






Brady had an upper GI with barium swallow to ensure his anatomy was normal and that his flaps were closing appropriately. Good news! His anatomy looked normal. Brady was then scheduled for an upper endoscopy with biopsy. This was tough. In fact, I have no words for how tough this was. We went to the hospital and settled into the pre-op area. Brady was given a stuffed puppy and a pair of yellow scrubs to put on. He ran all around the pre-op area playing and laughing and having no idea what he was about to go through. I, on the other hand, was a mess. The time finally came for the nurse to get Brady and carry him back to the OR. I vividly remember Brady reaching out for me and screaming, “Mommy!” He cried the entire way back to the OR. I cried all the way back to the surgical waiting area and during the entire procedure.






Eventually, his GI came out to see me and my husband to tell us that he had found several things. One, Brady had “adult-like” damage in his esophagus and stomach due to bleeding ulcers. One of those ulcers being the size of a golf ball. This was rather large for a boy of Brady’s age. Two, Brady had furrows all up and down his esophagus. Three, Brady had a substantial amount of white lining build up in his esophagus that was going to be further tested. Four, Brady more than likely had something called Eosinophilic Esophagitus. Say what, you say? Exactly.






A few days later, it was confirmed that Brady did indeed have Eosinophilic Esophagitus. The medical abbreviation is EoE. Finally! We had something to call what my son was going through. All of the sudden the incessant projectile vomiting, failure to thrive, fear of food, lack of appetite, etc. all had a name. EoE. I did my research, I looked at non-profits dedicated to research for EoE, and I scoured the internet looking for blogs of parents with kids with EoE (this part without much success… hence my newly created blog).






There are many websites you can visit to learn all about the disease. Below are a few that give a summary, symptoms, and treatment of EoE.





http://curedfoundation.org/site/what-is-ee/




http://apfed.org/drupal/drupal/e-learning-center




http://www.cincinnatichildrens.org/service/c/eosinophilic-disorders/default/?utm_source=Cincinnati%2BCenter%2Bfor%2BEosinophilic%2BDisorders&utm_medium=shortcut&utm_campaign=cced







And to think. This was just the beginning.

Welcome to Craz-EoE-town

I've been wanting to start a blog for quite some time now.  Mostly as a way of chronicling our journey with our 4-year-old son, Brady, who was diagnosed with Eosinophilic Esophagitus (EoE) two years ago.  This whole blog idea also came about as my way of lending support to those that are going through it and to help those parents feel not so crazy.  Let's face it, we've all been there.  That's why I call our life "crazy town" some days.  If you would have told me 5 years ago what we would be going through today, I never would have believed it.  But it's happening... and there's nothing I can do about it but continue to fight for my son, become an even stronger person than I ever thought possible, and keep the dream alive that some day there will be a cure for EoE.  That some day Brady will be okay.  That some day the stress and tears and the worry will subside and this will be a distant memory.  Some day.

Another reason to start this blog was to provide a lens to family, friends, etc. who have no idea what we go through on a daily basis.  I have great support in my life. It's through the encouragement of friends who are sometimes in a state of shock and awe when I tell them about something that's happened in our EoE world that have encouraged me to tell my story.  To those friends, I say thank you.  Thank you for listening.  Thank you for offering a shoulder to cry on and prayers on days when it's not so good.  Love you!