the history of Gabriel

There will always be those who go against the grain.  For some, it's only natural to debate and question the rest of society.  For those few, agreeing may feel like submission, and the only way they feel satisfaction is to debate, and challenge even the most undebatable concepts.
In some ways- I too am a challenger.  I challenged the doctors when they prescribed daily steroids.  The thought of a 2 year old swallowing twice the adult dose of steroids that stunt grown, diminish calcium absorption, and a million other significant side affects was not an answer, for me.  So I challenged, and I found a solution.  I challenged the idea of feeding tube instead of an extreme and hard to follow diet.  I challenged the doctors who thought it couldn't be done.  It is the challengers that push the rest of society to find a better answer.
I encourage you to challenge me.  Challenge me to learn more about the body and its disease, challenge me to learn more about the side effects of Gabriel's drugs, challenge me to prove my point in such a strong way that it is clear to the world.  Challenge me so support a child as a single parent, challenge me to support a child with 3 separate disabilities as a single parent.  It is overcoming challenges that creates growth.




Gabriel was born June 21, 2006.  The first day of Summer, and historically, the day the sun shines for the longest.  Not a coincidence in my mind.  Gabriel was healthy, heavy, and overdue.

Gabriel was nursed excessively for the first 6 months of his life, and nursed with the addition of foods in his second 6 months.  I knew that this was the healthiest option for him.

At 2 and a half months, I took Gabriel to the doctor because I knew his cough was affecting his breathing.  Diagnosed with a cold, we were sent home.  I brought Gabriel back just days later, with bigger concerns.  This time, diagnosed with asthma, and a cold, we were sent home with asthma meds.  2 days later we returned. More meds.  I knew this wasn't good.  Now for a 4th time in about a week, Gabriel's pediatrician examined him and called an ambulance.  He was rushed to the ER with dangerously low oxygen levels.  He was admitted for nearly a week, and diagnosed with pneumonia.  I took 2 steps backward in the ER, not to get in the way of the 4 nurses, 3 EMT's, and 2 doctors working on him.  I turned around to see both of my sisters, and my mother.

Between 2 and 6 months old, Gabriel began vomiting every day.  He was diagnosed with pneumonia 7 more times.  I tried daycare after daycare, but every time he threw up, he had to leave. My sister watched him in the evenings so that I could work.  And my Mom and Steve gave us a home.

After 6 months I suspected allergies.  As a nursing mother, I eliminated nuts dairy and eggs from my diet.  As an infant, I fed him only the suggested basics; Rice cereal, breastmilk, and few fruits.  Between 6 and 12 months he was diagnosed with pneumonia 6 more times.  He was talking allergy and asthma medicines daily, he was taking reflux meds for his vomiting, he was sleeping upright in a stroller, and I was trying as hard as I could.   Although recommended weight gain for infants is between 1 and 4 pounds a week, between 5 and 12 months, he had gained no weight, he was failing to thrive.

We visited an allergist and pulmonologist.  Gabriel has had nearly 20 chest x rays, 2 CT's, and a 'swallow study' by his first birthday.  The doctors agreed that it must be cystic fibrosis, and tested him immediately.  Waiting for results was the hardest week of my life.  The average life span of a patient with Cystic Fibrosis is only 21 years.  Thankfully, Gabriel's test was negative.

The next doctor believed that Gabriel fit the description so well, that he had him tested again.  Everyday, I drove Gabriel to my sisters, and threw the insides of his carseat in the washing machine- because he had vomited on the way.  I planned an extra hour and a half in each direction to bath him, scrub the car, and hose out the car seat.  Thankfully, I had my sister to bring him to everyday.  And thankfully, Mom gave us a home until we had things under control.

By one and a half, the GI doctor blamed the vomiting on the coughing, and the pulmonologist blamed the coughing on the vomiting.  And the pneumonia? They both believed it was the end result of a baby inhaling vomit.  As Gabriel's skin grew raw, I removed more foods from his diet.

By 2 Gabriel had a long list of nearly 12 foods to avoid, and we had a routine.  We had a special diet, we had medicines, and I cleaned up a lot of vomit.  Gabriel had pneumonia 6 times in his second year.  A significant improvement, but still far from healthy.

Allergy tests for 2 year olds are nearly 50% accurate.  We tested Gabriel often, but we not always successful in pinpointing results because of the inaccuracy at testing such a young child.  I continued to eliminate foods every day, and Gabriel continued to vomit, and wheeze.  At 2 1/2 Gabriel's GI specialist performed a surgical biopsy.  I wasn't clear what he was looking for, but I hoped for an answer.  The doctor called me just a few days later to tell me that Gabriel had a rare disease called eosinophilic esophagitis.  I wasn't comfortable with the treatment, so I researched, asked questions, and found a better treatment.

EEEE.  Gabriel's lungs are scarred from the frequent pneumonias.  That, combined with his asthma and allergies requires 3 preventatives daily.

As Gabriel has aged, we've diagnosed 2 more conditions.  At 3, Gabriel was diagnosed with a connective tissue disease that affects his heart, and causes his joints to painfully dislocate.  Just before his 4th birthday, his allergies took a turn for the worst.  Gabriels symptoms were now triggered by inhalants.  This means that now he must not only avoid eating dangerous foods, now he cant be near them.  Gabriel was prescribed a life saving EpiPen, and is restricted from anywhere that serves nuts or fish.  This includes Homeschooling.

Daily, Gabriel is healthy.  At 4 years old, he has a growing list of 40 don'ts. At this point, the doctors have recommended that we don't introduce any new foods, so I don't expect the 'do' list to change.  Gabriel takes 4 Medicines, and 2 breathing treatments daily to prevent attacks and pneumonia.  Gabriel is homeschooled, and we've moved into a house that we've customized for his health.

We are not victims.  With the help of the doctors, and our incredible village, I've taken Gabriel from failing to thrive, to healthy.
It is with happiness and tearful pride that I announce that Gabriel has gone a year and half without a diagnosis of pneumonia.
In fact, It has been a full year since an ER visit.
It is in celebration that I remind you, his conditions have not changed,  The treatment, and accommodations we've made for him have made all the difference.

My god, I doubted ever being able to say that.  I am happy for him, and proud of my self to say that we have accomplished all of this together.  I believe that we have overcome.

They say it takes a village, and I couldn't agree more.  What an amazing feat we've accomplished together.  Your comments and support make be value you even more today.  Thank you for being a support, a shoulder, and an ear.