No time?

I've got to cook dinner for tomorrow; I'm thinking coconut curry chicken and rice with spinach for lunch, and maybe sausage with okra for dinner.  Im always amazed what this kid eats!  When you take away the chicken nuggets and grilled cheese, he really enjoys what's left!  I glared at the computer today thinking that I don't have the time or energy to blog.  This is a rough time of year for Gabriel- last October he was hospitalized twice.  It's time for some meds, and a breathing treatment, then of course emptying the dishwasher, cleaning, laundry-- oh the to-do list of a Mommy.  I thought of something my Mom said to me yesterday.  My mom  is possibly a bit OCD (and I mean that in the nicest way, Mom),  while I'm at it, my step mom is too (it's ok Susan, you just know where you like things).  I grew up around neatness and organization, everything had a place.  My mom stopped by the other day, at 8am, and wasn't at all impressed by the 'organization' of my house.  oops!  Yesterday, she called me, and told me this:

"I met a lady who has a 22 month old with cerebral palsy.  She was exhausted, completely overwhelmed, and laughed when she told a story about her Mom asking her why she didn't have time to get a pedicure.  It dawned on me that while your up in the middle of the night to give breathing treatments, working outside of your home more than 45 hours a week, and cooking special meals and things for Gabriel, cleaning doesn't seem so important.  Im sorry I joked about you not cleaning up for the sitter, with all you have going on cleaning is not so important"

Mom, I hope you don't mind me sharing that, but, really, it could be more true.  So, today, as Im feeling I don't have time to write, I thought Id share this story.

Moms: You're busy!  Whether you work from home, or outside, busy with doctors, or not, washing the sheets in hot water to eliminate dust once a week is much more important to your allergic kid than finding time to fold them and put them away.  It's OK if you don't have the time :)

Beyond what you can see

I try incredibly hard to make Gabriel feel no different from other kids his age.  We try to not miss school, I find fun safe things to do on weekends, and I make sure that Gabriels food look's and tastes like what his friends eat.  I spend so much energy helping Gabriel blend in, that I forget that in some ways, he needs to be treated different.  And sometimes- theres nothing wrong with a little different.  I am proud that Gabriel goes to school full of energy, lunchbox full of snacks, healthy and strong, everyday.  You've heard that looks can be deceiving?  When friends, teachers, and sometimes family- or new doctors, look at Gabriel, they don't see the prescriptions and breathing treatments he had this morning, and they especially don't see what is missing.  By nature I am optimistic, I see the glass half full, and I'm proud of that.  So I will take a moment to appreciate how much Gabriel has grown, how happy and active he is, and that he is intelligent beyond his years.  I am blessed that I love to cook for him, and that he enjoys the foods that his can eat!    Society doesn't seem to understand the severity and allergies and asthma.  I understand that Gabriel is an extreme case, and for some it is difficult to believe.  It takes a bit of negative pessimism to describe all of what he cant have, and avoids.  Maybe it is the rarity- or maybe the public isn't educated on allergies- but sometimes I feel like he should wear a sign that says "Be careful, I have allergies."  I asked that children not be allowed to bring peanut butter to school, and the staff thought it was a crazy idea.  "We cant take peanut butter away from those kids, that just wouldn't be fair."  I've explained to staff at Gabriel's school how important it is he not sit anywhere near a kid who bring dangerous nuts in their lunch.  Still, nearly everyday, I have to move his placemat to a different table at lunchtime. I am glad that my schedule has recently given me the flexibility to visit Gabriel's school at lunch time, but I cant be everywhere.  You can imagine the fear I experience on a daily-rather hourly, or by the minute- basis.  On the average day Gabriel appears healthy, he goes through his day and plays with his friends- but on the accidental occasion that he may even inhale one of his dangerous allergens, he may experience anaphylaxis.  Anaphylaxis is called a life-threatening reaction because it actually threatens your life.  I am sure that no one brings peanuts in public to be careless, or because they don't give a hoot about someone else's life-  I am certain that they are just unaware of what a life threatening allergy is.  Some disabilities are aesthetic.  You can immediately see what challenges some may face- and hopefully even go out of your way to open a door, or help when you can.  When someone suffers from life threatening allergies you cant see it in the form of a physical malformation, you don't see a dog in an orange vest leading them around, and hopefully, you don't ever have to witness what a dangerous allergic reaction looks like.  Most of what we do- as parents of allergic and asthmatic children- is work to prevent reactions, to avoid triggers, and hope to never ever have to experience that.  Sometimes, the most adorable, jubilant, healthy-looking children seem so healthy and happy because there are doctors, nurses, and dedicated parents that have created a daily plan of prescriptions, steroids, diet, and a stuffed animal and carpet free lifestyle to keep them that way.  When we travel, we fly Southwest Airlines, because Southwest will offer a peanut-free flight when requested based on allergies. "Folks, today we will be offering only pretzels because there is a traveler on board with a peanut allergy, so please, if you're traveling with peanut products of your own, please wait until you exit the plane to enjoy them"  They announce at the beginning of the flight.   I appreciate it- because without it we wouldn't be able to travel, but believe it or not, I've heard angry groans from rows behind me "Well why cant they serve me peanuts just cause someone else is allergic, thats not fair!!"   Im sorry that sometimes we take away your roasted, salted airline snack, but thank you for keeping these allergic children alive onboard!  So, no, Gabriel doesn't wear a sign warning the world about his allergies, and I know that most people we meet honestly don't believe me.  I'm not writing to convince anyone, or complain how sick Gabriel really may be at his worst.  I blog everyday to educate the rest of the world about how dangerous allergies can be, and believe me or not, please just take it seriously.

Comfort Food

Luckily- I don't mind cooking!  I consider it a challenge, and love surprising myself with what I can put together out of our safe foods.  When I was growing up- like most americans, the food I ate did much more than provide me with the necessary ingredients I needed to grow.  I love to eat food because it tastes good. I crave something amazingly creamy, or savory- and I've gone out of my way to satisfy that craving.  Haven't you?  Food isn't just something we indulge in for pleasure. Food incorporates 2 of our five senses- the smells and tastes of things we've grown up eating create memories, feelings of security, and defines the meaning of comfort food.  Food was such an important part of my childhood, and still is in my adult life that I refused to ever let Gabriel live without that.  A feeding tube was not an option for Gabriel and I, I was motivated to create a menu that Gabriel could eat, but especially enjoy and create memories with.
My Granny was cooking every time I came over.  Sometimes dessert, sometimes a feast of a dinner- but either way my stomach feels warm and full, when I think back on those fond memories.  My Granny was from Carolina, and her southern style was as memorable as southern comfort food is described as.  She always cooked with vegetables fresh from her garden, and went out of her way to cook something that I especially loved if she knew I was on my way.  I had one mild food allergy as a child- and at home I ate a mostly milk free diet.  When I went to Granny's, I was spoiled with dairy free tofu lasagna.  She bought me Tofutti Ice cream sandwiches, and created special meals that I normally missed out on to accommodate my allergies.  At Granny's house, I got to eat something just like what everyone else ate- and I loved it.  If you've ever had your spouse cook for you, or you Mom make you soup when you're sick, you know that nothing makes you feel better than someone going out of their way to cook something special just for you.   My Granny passed away when I was early into Gabriel's pregnancy- but the fond memories of everything she went out of her way to cook for me are still appreciated.  I know that everyone has lost loved ones- and everyone has someone they miss dearly. Some of us tear up when we hear a particular song, maybe when you see a picture your loved one was fond of, or smell your Grandfathers musty cologne.  I tear up a bit when I cook lasagna, and I feel what it feels like to love someone through the food you cook for them.  When you cant find the words to tell someone how much you care about them, and you can't describe just how much you are concerned with their happiness- show your love through the kitchen, and they will remember it like I do.  I love Gabriel through something special in the kitchen everyday.  This family of 2 uses more pots and pans than any household large enough to pack out a minivan.  Gabriel's lasagna sauce is simmered for hours- pumpkin puree seasoned with basil and garlic makes a great substitute for a tomato allergy.  Gabriel's noodles are made from rice, and we can't use sausage, but love love to add ground beef to our lasagna. I simmer coconut milk, mixed with rice milk, and thickened with tapioca powder to make a creamy sauce that mimics cheese to pour over the top.  Between the layers I add chopped spinach, and other veggies.  Gabriel's lasagna may not be much of a lasagna at all- but he enjoys it, and I make sure he can.  With such a list of allergies, I try not to focus of food's importance, and try not to connect emotions to edible things, but feelings tend to bypass our brains when we eat, and our hearts feel compassion, and incredibly content. I felt an incredible amount of love when my Granny cooked something special for me, and I love Gabriel as much as I can through my cooking as well.




Gabriel with his rice and avocado 'sushi'

G

to teach or not to teach

My first appointment today at the salon was one of my regular clients, a first grade teacher.  I can tell he has passion for his career, and for his students- and we never get more than 10 minutes into the haircut without talking about his school, and his class.  This teacher has a first grader with a life-threatening peanut allergy. I pay close attention to his details about the adjustments the school makes to accommodate her, and try to imagine what first grade is like for a child with a history anaphylaxis.  The secure, homey first grade classroom sounds promising.  This class stays in their room for snack time, to hear a story and to keep safe from cross contamination, they wash hands as a class, and use table cloths to protect from crumbs.  My fears and concerns subside when I think of the protection that the  family like atmospheres of the Kindergarden and first graders.  As our children grow older, they require less supervision, but also learn to be curious, forgetful, and fearless.  Older kids are too busy to wash their hands, instead they are playing 'dare' and testing the limits.  9 and 10 year olds don't give me the same safe secure feeling that the kindergarden classroom does.

I am a third generation teacher.   I can attest that the teachers in my family tree are passionate and impactful.  I value education, and I believe socialization skills are possibly more important than the textbook curriculum that our diplomas credit us for.  Recently, the idea of homeschooling Gabriel has crossed my path from a million directions.  Gabriel's allergist recommended it.  I can clearly see why.  'Living Without', a magazine for people living with allergies and food sensitivities recently featured an article on a family who chose homeschooling for their very allergic child.  In my box at work, i found a pamphlet of the Charter Homeschool options in our area.  I started asking, and seeking information, because it seemed to be finding me anyway.
 I learned that children in a homeschool program can attend school (usually once a week) for music, art, or PE classes.  Homeschooled students can participate in extracurricular activities- like sport teams or theatre that your school may offer.  A student like Gabriel- should he be homeschooled in the future- will never be able to blend in with his classmates; I hate to use the "N" word, so let's say that he wont always feel like he fits in with his friends.
 Play-doh, fieldtrips, experiments, fundraisers, school dances and functions, class pets, gym class, candy rewards, noodle necklaces, and charts made from glued cheerios are all things that Gabriel could not participate in.  Maybe it would be best to limit his interaction to controlled environments, and those that do no involve food.  The teacher-client in the salon this morning raved about the homeschool curriculum and program that his school district offered.  Wow, did I ever expect to hear a teacher pleased with the idea of homeschooling in these situations?   Doctor, teacher, and Auntie agree, maybe its time for this Mommy to seriously consider it.

The grass isn't always greener.

            Oh the wisdom of this 4 year old.  Gabriel spent 10 minutes describing how to use his lifesaving EpiPen to his Aunt (Chelsea) just the other day.  He described when to use it, how to remove the lid, and how long to hold it after the medicines been injected.  We giggled at how much he knew, and how silly his descriptions were, but secretly, he made me very proud.
  Sometimes Im not positive that a preschooler has the capacity to understand how serious, and severe such important health issues can be.  What crosses his mind when I tell him something is 'dangerous'?  How literally does he take me when I say that he can't be anywhere near a peanut butter sandwich?  The older our precious little ones grow, the more time they spend away from us.  As much as I value and encourage his independence, I secretly hope he will stay within reach for a few more years.  This morning wasn't terribly smooth.  Gabriel woke up coughing a wheezing.  Before he was even exposed to food, the smell of the grass, or the pollen dust breeze, his exhale sounded as crackly as an untuned AM radio station.  I turned on the nebulizer and gave him both a dose of his daily preventative, and his rescue medicines.  On the way to school he coughed...and by the time we were ten minutes from home his breathing was as labored as it had been early this morning.  I pulled over, listened to him closely, and set up his portable breathing treatment.  These aren't always days that we can call is sick, and snuggle safely on the couch together.  I am lucky that Gabriel's teachers have experience with asthma, and I am lucky to work close enough to check on him on my lunch break, because learning how to function day to day, means learning how to go to school as often as he can.  I worry- and check my voicemail more often than I need to.  I call in to check on him, and I make sure he's picked up early.  Today, none of those things made me feel any bit more secure.  I didn't have faith in medicine, and I didn't 100% trust his preschool staff.  Today, when I kissed Gabriel goodbye I felt safe because of this story his teacher told me.

Ms Bev said...
"Gabriel sat quietly on the bench yesterday, while the other kids ran and played.  I asked Gabriel why he wasn't playing.  His answer?  'I cant play Ms Bev, Im allergic to grass.'  I asked him where he could play, and he said the bark on the other playground.  I lined up the kids, to walk them to the playground on the other side of the school. Gabriel stopped when we were half way there.  I asked why and he answered 'I cant walk on the grass Ms Bev, Im allergic' "

Just the other day the allergist let us know that Gabriel's biggest outdoor trigger was grass.  So, as I always do, I explained another allergy to my intellectual little boy.  When his teacher told me how 'aware' Gabriel was of the grass, I laughed a little.  Sure he may be sensitive to grasses, but I never expected him to avoid it completely, I had simply hoped that he didn't roll in it.  I called my sister, Christy is the one person in the world who can safely shop for Gabriel in the grocery store, I trust her completely, and she has a clear understanding of all of his allergies.  As his Auntie laughed at my story, she told me that he often tells her "Auntie I cant eat that."  If ever she gives him something that he doesn't eat regularly- he refuses to touch it.  I was in awe.  Gabriel never questions anything I give him, but why would he, I'm Mommy.  I had no idea how aware he was when Mommy wasn't around.  When I walked away from his school- and drove towards work for the day, I felt a new security that I haven't felt before.  I was proud that my son understood his triggers and finally trusted that he could make the right decisions.  The last thing I hope for is a paranoid, over cautious allergic bubble boy- but since there are more foods on his no list than his safe list- and since his list of prescriptions, and doctors can top that of a geriatric patient, his awareness makes me very proud.  I would imagine this is the feeling of watching your baby go to college- Proud in ways you cant describe.  Proud of yourself for job well done, and proud of your child for working so hard.  Nervous and fearful of the life altering challenges that lie ahead, but confident that you've done everything in your power to prepare them for the real world.
Thats the kind of proud I was of my 4 year old today.

An emotional child

If you've ever ran a little too fast, you know the affects it can have on your lungs.  Increased rates, less lung capacity... Now imagine running to fast, and then recovering only while breathing through a straw.  The airways on an asthmatic child are inflamed, both because the airways and swollen and narrow, and because of mucus and fluids lining the airways.  It seems nearly impossible to imagine that recovery, but thats what it feels like to an asthmatic child.  I think that asthma has become so common in our society that we so often down play its severity.  Just like when you've worked out too hard, you feel the same shortness of breath, pain in the rib, and short shallow breaths when you are emotionality upset and crying, or even when you are laughing too hard. How about fear? Same symptoms as well?

The parenting job has many responsibilities.  We focus so often on keeping our children healthy, but the job also requires that we serve as role models, instill manners, independence, social skills and educating our children.  My son is what we call in the Paul Mitchell world, a 'feeler'.  He is emotional, and his feelings are easily hurt.  Sure, most children have a touch of 'feeler' in them, but my son is particularly sensitive.  Like I was at his age; at his happiest, he sings, dances, and showers you with love, but at his saddest, he cries the heartiest cry and sobs with sorrow.  Its heart-wrenching even to watch.  I love how sensitive he can be to the feelings of others, and even the compassion he shows for the homeless collecting coins.  My struggle, however, is dealing with this emotionally sensitive little boy- while he's breathing through a straw.  On a random occasion, nearly once every month, Gabriel hates to see me leave him at school.  Even when he's a 4 year old preschool professional, on the days he's either tired, not feeling well, or just feeling a bit emotional, the mere thought of me leaving him at school for the day causes a breakdown.  He cries so hard he sobs, and his breathing appears labored.  His hysteria heightens, and his cries sound louder- between gasps.  Now, if you've ever cried, I mean a real, upsetting cry; you've felt the feeling of gasping for air while painfully hiccuping, and felt the muscles spasming in your diaphragm.  And imagine that through a straw.  The coughing begins,  and just like after a long run, his heart is racing, and his muscles are tightening.  I keep it short and sweet, and kiss his clammy forehead goodbye.  I leave the classroom, and I close the door.  My heels echo down the hall as I take several steps, but I'm not going anywhere.  On days like these I wait.  As I turn the corner , and rest my back against the hallway wall, I sigh.  With a deep breath, in my clear, healthy lungs, I painfully exhale, and every time, this is where my eyes fill with salty tears.  I bite my lip, and cover my face with my palm. The moment I try to blink hard enough to wipe the tears away, they run down the side of my cheek.

What do you do in a situation like this?  Sure, I wait it out to I hear him calm down- I stay close enough to hear his breathing, and to make an emergency medical decision if necessary.  What causes your children to cry?  Discipline?  Punishments?  Lectures and lessons?  You've heard that some of life's lessons can be painful? As parents, we try our best to teach our children right from wrong, and pray that we make them as painless as possible.  What if painful literally means physical pain in the chest, and difficulty breathing? When do you sacrifice teaching your child a lesson for the sake of their well being? For me, its very gray.  I try 'coach' Gabriel in the most gentile way, but sometimes a 4 year old requires a stern tone.  Sometimes I err on the side of caution, and give in to his dangerous sobs, and sometimes I stay firm, Albuterol nearby, to instill discipline and respect.  The problem is there is no right answer, we have to trust our best judgements, and hope that our children grow up learning our values, and prideful behaviors.  If you are concerned with the health of your children, concerned with their upbringing, and if you are debating how to best balance the two: trust your fair instincts, stick to your guns when you can, and continue loving your children wholeheartedly.  If those are your concerns, and you struggle to walk that fine line between health and values, I am confident;  you an absolutely amazing parent.

This 24 hours

Its 9:53pm, and I finally sat for a moment.  Like every Mommy, cooking cleaning and laundry are part of my daily duties.  I don't think Ive ever met a Mom who wouldn't agree that "Our work is never done."  There are, however, several differences that might make Gabriel's 24 hours, a little different than that of most kids.  

Since the last time I blogged..

Sept 20, 10:00 pm-  "Mommmmmyyyy!....Mommmmmmyyyyyyyyyyy"  Gabriels voice echoes through my peaceful home after dark.  He was yelling because he wasn't breathing well.  I marched my heavy legs up the stairs and pressed my ear flush against his bare back.  I heard what sounded like tissue paper rustling around, between whistle like exhales. Down the hall I went- looking for his breathing machine (nebulizer), and his albuterol.  I strapped the fishy mask around his ears, and sat down and the machine hummed, and went to work.  The machine forces purified air through a small plastic tube, that turns his liquid medicine into a mist that can be inhaled into his lungs.  I looked up a moment later to find that the monotone hum of the machine and sent Gabriel into dreamworld.  Ten minutes later, treatment complete, I listen to his lungs again.  Satisfied with the improvement, I went to bed myself.  

Sept 21, 2:30 am- This time, I couldnt clearly make out any words.  When Gabriel is upset I cant tell where one word finishes and another begins.  He wakes up often in the middle of the night- sometimes itchy, sometimes wheezy.   I got up to find the Benedryl, and remembered were on a 3 day antihistamine fast because of his allergy testing.  I scratched his itchy skin, she "shhhh"ed him until he fell back to sleep.  

Sept 21, 6:30 am-  I felt pressure on my feet.  Just as I rubbed my eyes, and tried to pull them open, I heard a giggle.   Gabriel loves to wake me up this way. He climbs on my bed in the morning, and I couldn't find a better way to wake up than with a hug.  Together, we stumbled downstairs, and started with breakfast.  Rice cereal, rice milk.  He ate, I tried to make myself presentable for the day.  For the sake of anyone reading this, I wont describe what happened when he sneezed all morning, but I will just say, Im not sure where it all came from.  Just when I thought we were ready to head out the door; I backed up, and fit in out daily preventative breathing treatment.  Fifteen minutes later we were ready to go.

Sept 21, 8:00 am-  Hello Dr Au's office.  Gabriel has an allergist, pulmonologist, cardiologist, orthopedic, gastroentologist, geneticist, and of course his pediatrician, whom collectively keep a great eye on him.  You can imagine that doctor appointments are a regular part of our life.  Generally I leave the doctor very pleased.  I consider it all good news; a new prescription, new food to avoid, or a "keep doing what you're doing,"  any way it goes, I figure we are making strides.  Today we heard all three, a new prescription, a new allergy, and "everything looks great."  As soon as Gabriel matures enough emotionally to endure twice a week allergy injections, we will add that to the schedule.  Immuno -therapy will desensitize him, and decrease his symptoms. Yay!

Sept 21, 10:00 am-  We get home just in time to hit the road for the day.  I gather our things:  Gabriels lunch, my lunch, his medicine backpack, my things for work; and without forgetting something for the day (hooray!)  we're off.  These days, we arrive at the preschool just as lunch is served.  I pull Gabriel's food from his lunch bag, and examine the rest of the table.  No peanutbutter? check.  When a friend does have a PB&J in their sack, Gabriel sits at a separate table, clear across the room.  We can't be careful enough, and we've learned the hard way:  If you're close enough to smell it, its close enough to make him sick.  

Sept 21, 8:00 pm- Home from work.  The best part of the day for a Mom.  I'm greeted by a full, bathed Gabriel, and his Nanny.  The day is just beginning for a Mom.  Cleaning, laundry, stories, and more.  I preheated the oven as I dug through the freezer.  I prepare 2 meals every evening for the next day.  No sandwiches for this kiddo, so Mom does a little extra cooking to help keep him fed and healthy.  Whats on the menu for today?  Steamed eggplant, and purple cauliflower with rice noodles, and for dinner; chicken and broccoli with rice.  Probably doesn't look appealing to your nugget loving, bologna eatin preschooler, but to mine, its perfect!  Time for another preventative breathing treatment.  This time, it didn't lull Gabriel to sleep, I can still hear him singing from his bed.  

Sure, we have allergies.  There are places that we cant go, and things we cant do; but our everyday life looks a lot like yours.  We are happy, we're growing strong, and we wouldn't have it any other way.

You Eat What?!

Yes, I know, I am tainted by my personal experience.  But, really, what else do we have to go on in life, other than what's worked for us in the past?  When I was young, I was allergic to milk.  I had painful eczema on my knees, face, elbows and hands, that only changes in my diet could control.  Gabriel had pneumonia 13 times before his first birthday.  He vomited daily, struggled to fill his lungs with air, and his food watered through his diaper within minutes of eating.  He is healthy and growing, and hasn't had pneumonia in nearly a year, all because of extreme changes to his diet.  I find someone new nearly everyday who could benefit from changes to their diet.

This is how I see it; The food you eat is either digested properly, or it isn't.  When it isn't, it can affect your ability, not only to digest your food, but bloating, headaches, migraines, heartburn, depression, anxiety, lung function, and skin health as well.  In the Pharmacutical funded country we live in, medical studies, and advances in medicine, are all paid for by drug companies.  We are all lucky to have companies like this invest in our health, and medical improvements, however, what are they studying as solutions?  What are they testing for cures?  What are the treatments that they are investigating?  Naturally, drug companies invest in drug research.  Sometimes, something as simple as a change in your diet could ultimately change your life.  And, of course, diet related health challenges are not something that the medicine we practice today educates us with.

There are small baby hairs in the lining of your stomach.  These celia hairs, in some people, can become paralyzed by the sticky gluten in flour.  You can see how sticky wheat gluten can be, just by adding water to flour.  When these celia hairs can't move, your digestive system can't function properly.  And so we have Celiac Disease.  Did you know Celiac disease can affect as many as 1:2 Italian American, and Irish Americans?  Very often, eliminating wheat and gluten from your diet can alleviate more woes than you'd imagine!  I've never been sure if Gabriel has Celiac Disease, a wheat allergy, or an Eosinophillic sensitivity to wheat, but I can tell you this;  when I completely eliminated all wheat and gluten from his diet, I saw a tremendous improvement in his health.  Sometimes a diagnosis is useless, if the diagnosis doesn't come with a cure.  Please don't settle for Irritable Bowl Syndrome, or calling your newborns stomachache colic.  Sure, you have an irritated bowl, but the question should be why?  You went to the doctor because you felt that your bowls were irritated!  Giving it a fancy abbreviation, and calling it IBS hasn't made anyone feel better.  I encourage everyone to experiment with diet eliminations, you may be surprised to find that you feel better, eat better, and you can finally throw away the Pepto, Tums, and Pepcid!

The Triple Threat

Gabriel was waiting in line for a ride at the Grape Fair today, and he looked at me and yelled "Mom, God made me special right!?"and I answered "yes Gabriel, he sure did."  And then thought about just how special he is.  I remember trying to decide on a name for my unborn child, and I found the definition for the name Gabriel.  Now I've never been as religious as I wish I was.  I go to church just a few times a year, and I can't quote one line from the Bible, but when I learned that Gabriel means "my strength is in God"  it felt like it fit just right.  I cant count on my fingers all the times in the last 4 years that Gabriel and I have relied on that immortal strength.

We were at the hospital not too long ago, and while taking down his medical history a nurse looked up said "ahh yes, the triple threat."  And so Gabriels health has been dubbed- The Tripple Threat.

Threat 1:  Asthma, Allergies, and Anaphylaxis
I'm sure everyone's had a cold before.  Congestion, watery eyes, sore throat.  Did you know that the bug isn't what makes you feel so yucky?  Your body does a good job of trying to force the bad-for-us-germs out- and creates these reactions.  The same thing happens with allergies.  The difference is that with allergies, your body is a little confused.  An allergic body thinks that harmless foods and inhalants like grass, dust, and pollen are dangerous; and tries to fight them off as well.  Gabriels allergist described the severity of your symptoms as an internal cup.  Small reactions may occur with each allergen as they fill up your allergy cup.  Once your cup is full the overflow will always result in the worst of your symptoms.  Sometimes the worst allergic reactions don't come from a specific allergen, just an overflow of too many.  An anaphylactic reaction is more like a bomb.  Allergic anaphylaxis is a sudden severe reaction that causes facial swelling, breathing difficulties, extreme drops in blood pressure, hives, etc.  I think the common perception is that allergic immune systems are weak and fragile, while in fact the opposite is true.  Allergic immune systems are strong, and over react.

Threat 2:  Eosiniphillic Esophagitis
Eosinophillic Esophagitis belongs to a family of eosinophillic disorders.  Eosinophil is a type of white blood cell that, in Gabriels case, invades his esophagus.  When he eats any one of his trigger foods there is extreme inflammation of the esophagus that causes severe vomiting (because the food cant pass), or impaction (where the food gets stuck until removed medically).  EE creates a ripple effect of other symptoms; digestive issues, malnourishment, malabsorbtion, scar tissue and permanent damage to the esophagus, growth delays, etc. A patient who suffers from EE usually has dozens of trigger foods.  Eosinophillic gastrointestinal disorders and diagnosed with a surgical biopsy. Generally there are more trigger foods than safe foods, or they are unable to determine what the trigger foods are, and this causes even more challenges.  Many EE patients have a GI tube, to feed formula into a tube directly into the stomach, or elemental diets(when only a formula is ingested).  We are very lucky to have Gabriels diet to such a science!  We keep his EE under control by avoiding milk, casein, malt, wheat, gluten, soy, all beans, legumes, egg (whites and yolks), corn, oranges, peach, pear, all melons, papaya, carrot, fish, shellfish, tomatoes, nectarines, nuts, and more!


and the 3rd Threat: Ehlers Danlos Syndrome
Ehlers Danlos Syndrome is a connective tissue disorder.  Gabriel was diagnosed when his knee cap dislocated often for no apparent reason.  Through doctor appointments, and tests I learned that all of his joints are hypermobile (double jointed), and we should expect frequent dislocations.  Ehlers Danlos Syndrome can be painful, but in about a quarter of the cases, it can be dangerous.  The connective tissue in your heart can begin to loosen and dilate, which of course, can cause major cardiac complications.  Skin will scar very easily, and any other connective tissue in your body can be affected (hearing challenges, loss of strength, bladder issues, etc) EDS affects Gabriels daily life very little.  We visit the orthopedic, geneticist, and cardiologist annually for EKG's and Echocardiograms, and avoid any impact sports for the safety of his joints.

Why we'll stick to turtles

Historically, furry animals have had their place as mans best friend.  Dogs are our security, our companions, and our rescue.  Other fur covered beings are perfect for a snuggle, for company, and to admire.  I hear more and more about how spending time with animals helps children cope, teaches responsibility, pets are used to help accelerate learning for special needs, and to make us all a little more kind to nature and other species.  My 5 year old sister kindergarten class was home to a bunny.  This probably adorable, fuzzy creature's job was to entertain the class, and surly teach them all the benefits of gentile companionship that animals can offer. As  This furry little friend roamed the class,  I'm sure every child in the room followed it with their eyes while it hopped around the room, and every 5 and 6 year old let out a big 'aww' as you would when you see a newborn, or a couple of newlyweds.  I believe that sigh filled with awe is heartwarming, and every child should experience that.  

As genetics would have it, my sister has asthma, like many many kids do today.  Some kids wheeze on a chilly day, and some when they've done too much running. But what do you do when those comforting creatures, those snuggly little beings, are the reason the ER staff knows you on a first name basis? Did you know that animals- cats, and birds, can all cause deadly anaphylaxis? Did you realize that for some innocent children, a lap dog on the bus can cause them to gasp for air?  I am fortunate enough that both my son my sister do not experience immediate throat closing from any of our furry friends.  Extreme cases are not the only dangerous ones.  Asthma and allergies are more dangerous than it seems to most.  Any asthma patients life is at risk when their breathing is not at it's best.  Oxygen fuels our brain and neurological systems, keeps our heart pumping, and ensures all other organs stay alive.  Next time you want to bring your favorite feline, or docile little dog to CVS for your errands, think of the little girl who may be there, picking up her steroid based breathing meds to help her get through another day.  
Today we are off to the Sacramento reptile show, in hopes of finding a scaly,  slithering companion for my Gabriel.  Although there may be a ball of fur curled up near your fireplace, there's none in our home.         Yes, the issue of pets and public very controversial, but I will always side with man over his best friend. 

an EPIc day

The Mommy in me, the emotional, protective mother in me, feels like we've moved to a new level of allergy.  Why wouldn't I? Emergency, life saving Epinephrine, means that you have emergency, life threatening allergies.  

The logical me, the intelligent, thinker in me says this is good.  I tell myself that his allergies have not changed, but his medicines, and my ability to protect him has.  Put the bows and arrows away, we are now equipped with heavy machinery.  

Gabriel has suffered from food allergies since he was born.  Before he was ever fed more than breastmilk, he has suffered from severe food reactions.  The list of foods that Gabriel avoids is longer than the Mississippi.  Finally, by his third year, I've made such a science of his diet-and my kitchen- that he lives nearly symptom free.  Just in the last few months, just as I thought I could finally control his health through his diet, I've learned that it's more than that.  

Just a few weeks ago, we went out to eat.  With such a specific diet, we ordered a plain chicken breast for Gabriel.  I had to send it back to the kitchen 3 times- they couldn't get the 'plain' just right.  In the meantime, they delivered my dinner.  Pasta served in a nice butter sauce, adorned with jumbo shrimp, mussels, and scallops.  I took a bite- and heard a cough.  Before I got through my swallow i realized we had a problem.  I packed up our stuff- my sister handled the check- and we rushed to the car with our artillery of medicines.  I've always been lucky to have my sister around, she is always so quick to read my mind and help us run out the door.  It happened so fast but it was clear- this reaction wasn't from something he ate.  I did some research and warned the family- keep him away from shellfish.  It happened again- this time at a relatives- when some mushrooms were stuffed with crabmeat.  What I thought might be pretty clear, was now obvious.  We visited the pulmonologist a week later, and he some blood tests.

 Today I took these test results to the allergist,  and I feel like we've left with a new life.  No baseball games, or circus trips.  No restaurants at all(that serve any type of seafood).  He suggested homeschool, and sent us home with an EpiPen.  

Its always been ironic to me, that the one thing that we all use to nourish us, that our survival relies on, can be the end of someone.  Food is so important, yet so dangerous in our lives.   Im proud of what I can cook on his limited diet.  Im excited that I can keep him healthy and growing on such a limited pallet.  I always know what to order, and how to make safe food yummy. 

Now, the air that he breathes, the smell of a fish, or the dust of a peanut, and one inhale-can put him in distress.  I cant save him from what he breathes.  I cant taste his air first- or cook it the right way.  I cant screen the air- or ask questions about it's ingredients...Now, the air he breathes, truly the one things we cant live without, can hurt him as well.  

We will go about our lives, sitting at the 'safe table' in the cafeteria,  staying home from field trips, and watching sporting events from the couch.  We will continue to be happy, and grow up strong, carrying a backpack full of medicine everywhere we go.   And, although we entered a new category of awareness today;  I will assume that it will be enough; that we never have to use the lifesaving drugs we carry, and the oxygen he breathes, and the food he eats, keeps him healthy.