Not exactly the Tooth Fairy's wish

Gabriel is 4 years old.  Young enough to still be full of energy, and vibrant.  Fresh enough to be healthy, and unaffected by the side affects of the world!

Gabriel had a dentist appointment Monday.  Not his first, but he loves it anyway.  For him, the dentist office is a playroom fitted with a Wii, Playstation, and 4 IPads for the kids to pay with while the wait.  This dentist office really is kid heaven.  Each examining chair has a flat screen TV over the chair, to enjoy a movie, during your oral exam.  Gabriel loves it.  So many people fear, and hate the dentist, Im glad that for now he still enjoys it.
I took a minute to ask the Dental assistant to use non-latex gloves, and I checked the ingredients on the toothpaste.  I sat right next to Gabriel's recliner, while he watched Toy Story 3, gripping his backpack full of medicine.  With so many tools, implements, and pastes going into his mouth, I held my breath and hoped we could avoid a reaction.

To the Restaruant Owners, Waiters, and Cooks

Dear Restaurant Owner, Waiter, Cook, or To Whom This May Concern:

I am writing regarding my medically disabled child, and other children with life threatening food related disorders.  In a recent visit to a privately owned restaurant, I was provided the ingredients in a specific menu item.  I was pleased to hear a short list of only three natural ingredients.  These ingredients, sugar being one of them, are all safe for my son.
The pleasant waiter/cashiers was apparently unclear on what 'sugar' is.  You see, for some children, like my son, even small amounts, as small as just a few PPM (parts per million), of corn starch, syrup, or additives can significantly impact his health.  In fact, it can cause permanent tissue damage in his esophagus, and affect his ability to swallow as an adult.
Owners, I urge you to educate your staff on the importance of confidently answering questions regarding the ingredients of your menu items.  I encourage you to take life threatening food allergies very seriously.  What may seem, to a healthy person, to be such an insignificant amount of an ingredient , can be deadly to others.

I would be happy to help further educate yourself, or your employees on the severity of food related disorders.   For more thorough information on allergies and anaphylaxis, and how to protect your consumers, patrons, and customers please visit the Food Allergy Initiative at FAIUSA.org, or The Food Allergy and Anyphylaxis network at www.foodallergy.org

Thank you for your time in this important matter.

Sincerely,

Raquel Dispenziere

Mom- Can you do this!?

Gabriel's first EKG

I'm blessed that Gabriel still considers it a gift to be unique!  We all should, but far too often we rather fit in than stand out.  When Gabriel learns something he can do, that no one else he knows can, he stands a bit taller.  Who knew licking your elbow could make you feel like a superstar.

Yeah, I said it.  Licking your elbow.  I know, its silly, and strange.  Gabriel has a genetic connective tissue disease known as Ehlers Danlos Syndrome. Matter of fact, so do my sisters, myself, and my mother.  I'm confident that I can trace it back at least 5 generations.  This joint disorder shows different in everyone.  We've learned that while the disease is genetic, the symptoms and severity are not.  For example, a parent might have a 'double jointed thumb,' while the child can't walk cause their knees always collapse.

Gabriel was 3 the first time he fell to the ground screaming.  He grabbed his knee and rocked back and fourth on the  kitchen floor.  Gabriel's kneecap was on the side of his leg.  It doesn't take a doctor, a nurse, or even a parent to recognize that that is not where a kneecap belongs.  I carried him to the couch, grabbed him so ice, and quickly tossed action plans around in my head.  "should we run to the ER?  Maybe we'll wait a few and see... Maybe We should just go to the doctor in the morning..."  As a parent, you hate to see your child in pain, but with something so new, so unique, and somewhat bizarre, I took a minute to think about a plan.  I grabbed Gabriel's ankle so that I could move his pant leg to take another look.  The whining stopped.  Gabriel got up, wiped his cheeks, and went back to playing.  That was it.

Biodegradable what?!

As a parent to a very allergic little boy, you could say I'm cautious.  Ok, Let's not beat around the bush, I'm borderline paranoid.  I think every parent has their share of anxieties. Crossing the street, talking to strangers, playing in electrical sockets.  Maybe your kids are older, and for you its bad influences, drugs, and cars.  Either way, we all have concerns, fears, and areas where we might be a little extra careful.  Because, well, when we're talking about the lives of our children, caution is necessary.  We walk a fine line between protecting your children, and pissing off the rest of the world with what they believe are your insane paranoias.  But for a Mommy, or a Daddy, or an Auntie who's loves her nephew, theres no such thing as paranoid.

Change is good

Ryder scratching Gabriels itchy back

Making a decision to pull  your child out of school, before he's even old enough to begin is not an easy one.  Gabriel is intelligent, friendly, energetic, and loves his friends.  Even at 3 years old, Gabriel bonded with his school mates in preschool.  He's proud of the artwork he's created,  he's begun looking up to his teachers,  and has become an expert in his own diet and restrictions.  School has been good for Gabriel in some ways.  


I was lucky to have found a school whose teachers genuinely cared about Gabriel.  The allergist and I had a very pointed conversation.  This doctor, who has followed Gabriel since birth, reminded me that Gabriel's sensitivities were getting worse- not better.  The allergist prescribed homeschooling, and Gabriel last attended preschool on the day of their Halloween party.  Just 3 months ago.  


I am happy to announce that Gabriel hasn't had a rash since he stopped attending preschool.  Yes, not one rash.  Now, sure, in the world of pneumonia, asthma attacks, Epi pens, and GI biopsies, a rash doesn't seem like such a big deal.  Maybe I'm being a bit optimistic,  but I believe a rash is the first sign of other symptoms to come.  Doctors have actually found that eczema and rashes release a secretion into the body that triggers asthmatic symptoms.  This doesn't just mean that eczema and asthma are related, it means that eczema can actually cause asthma.  For most of Gabriel's toddler years, his back and butt was covered in a scarred, scabbed, raw, bloody rash.  It was deep, and painful just to look at.  If a dry patch on your knee can be called eczema, and eventually cause asthma, I can only imagine what Gabriel's scars may have caused.  Baths are no longer painful, and Gabriel hasn't asked me to scratch his back near as often.  Gabriel's allergies are affecting by the things around him.  When he was constantly surrounded by foods that he is allergic too, peanuts or not, it caused reactions.


Long term, Im happy with this homeschooling idea.  Im comfortable knowing that Gabriel will be safe at home.  Im excited  knowing that he's got a great nanny to spend his time with, and Im confident that this intelligent little boy will learn more at home than public school would limit him too.  
In the big picture- this looks good.  


I try to keep the big picture in my mind at all times, because when I think about September.... and that my little boy will never have a first day of school, it breaks my heart.

A new home

Sure it takes some special care in the kitchen to keep Gabriel healthy, but for an outsider, its easy to overlook what else is involved.  We're in the process of moving, and there are so many things I need to consider!

Flooring, of course!  Any house we move to, must have no carpet!  Now, of course this will probably mean that we have to do some work, and have and have hard wood installed, but it is a huge expense.  

Pets.  Cats seem to put Gabriel in the hospital immediately.  There is no way to ever no what pets lived in a home before us.  I read a study that said 99% of homes contain some sort of cat or dog danger.  99% of Americans don't own cats/dogs, its incredible what dander can linger long after someone moves out!

Fireplace.  Oh I would love a nice cozy fireplace.  A fireplace isn't safe for an asthmatic.  Options?  Find a home without one, don't use it, or replace it with a clean burning gas fireplace.  How bout grass?  The doctor prescribed complete grass avoidance.  As a mother of an otherwise active child, I refuse to have his playtime limited because of our landscaping.  This will mean either pricey artificial turf, or a lovely rock garden.  Some of the most common allergy triggers: dust, dust mites, and pollen, can be kept at bay with air purifiers.  HEPA filters can removes more than 90% of these allergens from the air.  Average cost? $299 for a purifier that covers 300 sq feet.  Recently, we got rid of any and all stuffed animals that lived here.  Other recommended maintenance includes daily wiping down of mattress covers, weekly washing of curtains, sheets, mattress covers, etc, in HOT water.  A

The tasks and purchases recommended for Gabriel's health can seem expensive and time consuming.  It is one more way I keep Gabriel looking more and more healthy!  I am so proud that he is not recognized as a 'sick kid' anymore!  He goes about his days, playful, and healthy.  And these days, we spend much less time in the ER.

A new home

Sure it takes some special care in the kitchen to keep Gabriel healthy, but for an outsider, its easy to overlook what else is involved.  We're in the process of moving, and there are so many things I need to consider!

Flooring, of course!  Any house we move to, must have no carpet!  Now, of course this will probably mean that we have to do some work, and have and have hard wood installed, but it is a huge expense.  

Pets.  Cats seem to put Gabriel in the hospital immediately.  There is no way to ever no what pets lived in a home before us.  I read a study that said 99% of homes contain some sort of cat or dog danger.  99% of Americans don't own cats/dogs, its incredible what dander can linger long after someone moves out!

Fireplace.  Oh I would love a nice cozy fireplace.  A fireplace isn't safe for an asthmatic.  Options?  Find a home without one, don't use it, or replace it with a clean burning gas fireplace.  How bout grass?  The doctor prescribed complete grass avoidance.  As a mother of an otherwise active child, I refuse to have his playtime limited because of our landscaping.  This will mean either pricey artificial turf, or a lovely rock garden.  Some of the most common allergy triggers: dust, dust mites, and pollen, can be kept at bay with air purifiers.  HEPA filters can removes more than 90% of these allergens from the air.  Average cost? $299 for a purifier that covers 300 sq feet.  Recently, we got rid of any and all stuffed animals that lived here.  Other recommended maintenance includes daily wiping down of mattress covers, weekly washing of curtains, sheets, mattress covers, etc, in HOT water.  A

The tasks and purchases recommended for Gabriel's health can seem expensive and time consuming.  It is one more way I keep Gabriel looking more and more healthy!  I am so proud that he is not recognized as a 'sick kid' anymore!  He goes about his days, playful, and healthy.  And these days, we spend much less time in the ER.

What's your Monster?

Gabriel and his cousin, Ryder, My monsters :)

Every experience, every treat and joy; and every dreaded fear, is based on our own personal experiences.  Its all relative to what we, personally, know.  What you don't know, you don't miss, and what went horribly once, we're scared to try again.  We all have our own monsters, so to speak, that we create, based off of our own fears, hates, and experiences.

The eye of the beholder

Gabriel, waiting for his surgery to begin.

Happiness.  Thats what they say, right?  I heard something perfect today, "happiness isn't a goal or a destination, its a decision."
We all have hundreds of reasons to be less than happy.  We wait and wait, and hope that life deals us cards that will give us that ever after, that happiness we've been waiting for.  We all wake up, and use life challenges as reasons to be unhappy.  Its true though, happiness doesn't come from luck or destiny, it is an active decision that we have to choose when we open our eyes every morning.

This year's surgery- The results are in

Just 2 weeks after I learned about the newest in preventative surgeries for Eosinophillic Esophagitis, we were in the car driving over to the hospital.  It happened faster than I even had time to worry about it! Quick and to the point!  I like things that way.  Gabriel's surgery was scheduled for Wednesday, Novermber 10.

Bullies

Lately, bullying has been a hot topic in the media.  It has forced the rest of us to take a closer look of how common, how unsettling, and how dangerous it can be.  One of my many worries, is that as Gabriel gets older, it may be something he faces.  And probably more likely, and more intense than most kids.  I remember.  It wasn't that long ago that I was in school.  Any weakness is an excuse to be picked on.  Foreign accent, height or weight, name, intelligence, and of course health conditions or disabilities.  How many movies or TV shows have we seen that portray the  'loner,' the weakest, or the kid whose picked on to be the one with allergies, or maybe walking around with an inhaler.  I know the reality.  I know that kids might see Gabriel as different.  I think different is just fine. 

Hair Color Allergies

A fellow hairdresser friend of mine posted a story on Facebook today.  A British teen decided to color her hair at home, and and suffered from a nearly life threatening reaction.  As scary as that sounds its true.  Hair color, like food allergies, can cause a very wide range of reactions.  A hair color allergy can result in anything from mild itching, to full body anaphylaxis.  At work, I had 2 guests in the same week, who admitted to having hair color allergies, but requested a hair color service anyway.  One told me that they wold be ok, as long as the color was wrapped in foil, and the other let me know that she would be OK because she took benedryl before she came.  Clearly, I was more, much more worried than these women were.  


Maybe they didn't understand allergies so well.... but I think its important for everyone to understand your allergies can change!  What is mildly itchy today, can possibly swell your throat tomorrow.  Every time your body is exposed to an allergen, the response increases.  Using color in foil, or taking benedryl is not a solution, or a cure.  Hair color is always dangerous to those with allergies.  If you ever decide to color your hair at home, you should probably test the hair color on your skin first.  Mix a small amount the 2 chemicals together, as the directions instruct you to, and apply a small amount to your inner elbow, or behind your ear.  Even drug store boxes of hair color recommend you test for an allergy before use.  The chemical in hair color that triggers allergic reactions, in some, is called PPD (

ParaPhenyleneDiamine.)  The following substances are related to PPD, and can also cause allergic reactions:

• Local anesthetics benzocaine and procaine
• Sulfa drugs
• Para-aminobenzoic acid (PABA) in sun-protective creams
• Para-aminosalicylic acid used for treatment of tuberculosis

Use caution with chemicals like hair color, and always follow manufacturer's directions.  If you have a history of allergies, have ever had a reaction to hair color, or any of these related substances, avoid use of, or use extreme caution with hair color.  And always, always test yourself first.

* Please always check with your doctor for questions or concerns about your allergies.  While this information is meant to be informative, is should never substitute the advice of your physician

Infants and allergies

Thankfully, he gained weight throughout infancy,
 because he was nursed

We all developed allergies as we are exposed to them.  You can never actually have a reaction to something that you've never had, or been exposed to.  It has been proven that the earlier an infant eats a food, the more likely they are to develop an allergy to it.  Sure, we all think, that's ok, MY baby wont have allergies.  Lets be honest, someone in your family has some sort of allergies.  Maybe seasonal?  Maybe to just a few foods, or maybe just a drug allergy?  Eczema?  If any of these sound familiar, if there is any history of allergies, it is likely that your child will inherit them, and it is your job to to and prevent them.

Happy Halloween

Like Thanksgiving, Valentines Day, Easter, and birthdays, Halloween is another special day that the world celebrates with food!  How do you celebrate when you cant have food?  Why trick-or-treat when you cant enjoy the treats?

Evolving

Gabriels pediatrian checking on him at home.

One of scariest things about this world we live in is that it is evolving.  We're not quite sure what will come next, or what it will look like when our children are grown.  These same scary unanswerable questions are what scare me about Gabriel's Eosinophillic Esophagitis.  EE (as its often abbreviated) is a complicated disease, that is new to the world of medicine.  Doctors have only begun discovering and researching 10 years ago.  With only 10 years of medical history, we cant guess what Gabriels adult years will be like, or even his teenage years.  It takes decades of collecting data, examining patients, and experimenting treatments to completely learn all about a disease.


Every visit to the doctor gives me more information on this mysterious monster.  The newest discoveries?  Airborne particles can cause dangerous reactions(no surprise here!), and Eosinophillic Esophagitis can cause long term irreparable damage to the esophagus.  What does this mean for us?  More surgeries.

Preschool disaster

My idea behind this blog, is to educate.  I know that there are so many people with dangerous allergies and asthma, and so many people that we interact with everyday don't understand the importance, and how to help keep us safe.  Today I was reminded again why I write this blog.  Gabriel was in a dangerous situation today, because someone didn't understand the importance.  


Some people have a hard time understand why it would be fair to ask them not to eat peanuts on a plane.  For me, its simple.  To save someones life.  I think that any human, who fully understood the danger of the situation, would willingly give up their salty snack if it was as significant as saving someones life.  The problem may just be that we don't aways  understand how severe it can be, and I think, sadly, for many its about believing how severe it can be.  Most of us, as friends and family members, work very hard to keep our family healthy and as close to symptom free as we can.  When an uneducated airplane passenger, or classmate, or even teacher, sees how healthy our kids can be, they may not realize whats involved.  Sure, Gabriel has never had an anaphylactic reaction at school, and I think thats great!  I give him 5 medicines before we even step out the door every day to keep him under control.  I have to shop and cook for special meals, and avoid many plants, animals, and foods.  Please understand, when someone with allergies looks healthy, that means we're doing a good job!  That does NOT mean that they are healed, or free of their allergies!  

Dessert!

Gabriel's preschool teacher stopped me as I was dropping him off yesterday to let me know that they were having a class party on Wednesday.  She named off some of his classmates and what they were bringing.  I knew Gabriel's teacher was familiar with his allergies,   I asked her what I should bring.  Usually she asks for apple juice, or something simple that Gabriel is allowed, and can share.    "He said you're making apple cupcakes!"

Ok then, apple cupcakes it is!  I've been researching and experimenting with recipes for Gabriel for years. When you take the flour, eggs, butter, baking powder, and powdered sugar out or something- there's not much left.  Long ago, Ive mastered desserts that Gabriel loves, but finding something that the rest of us will actually enjoy is the difficult part!  Every time I cook it gets better, but I've really mastered it this time, and Gabriel knows it.

Yesterday was a great trial.  Good friends invited us for dinner, so of course I called and said "What can I bring!?"  I was assigned dessert.  Perfect.  I ran home and threw together my new recipe for apple cake.  Grabbed it out of the oven, and while it was still hot, we headed out the door.  Now, either my friends are very nice, and know how hard I work at this, or they are honest.  Which it is Ill never know.  Nice or honest, the apple cake was described as "Uh-Mazing!," and "better than apple pie!"

Ill share my apple cake recipe,  hoping that I can save at least one person from making 300 allergy friendly desserts while desperately trying to invent something edible.


Mix 3 eggs (for us, it's Ener G gluten free egg re placer),
1 3/4 cups sugar,
and 1 cup oil (since Gabriel is allergic to vegetable oil, I've found that coconut oil works best)

In a separate bowl mix together;
2 cups gluten free flour mix (I use 1 cup rice flour, 1/2 cup potato starch, and 1/2 cup sweet rice flour)
1 tsp cinnamon
1 tsp baking powder (If your baking for someone with a corn allergy, make sure to buy a corn free baking powder at a specialty store)
1 tsp salt

Add the dry ingredients to the egg mixture and add
1/2 tsp Gluten free vanilla
and 3 sliced and peeled apples (today, I only had 2 apples left, so I added them, and 1/2 cup apple sauce, and it was just as great)

Bake at 375 for 50 minutes.

Best served warm with your dairy free ice cream of choice.  Enjoy.

Disabled

I'm sure you've heard of the ADA, Americans with Disabilities Act. This act states that public entities and public accommodations must ensure that individuals with disabilities have full access to and equal enjoyment of all facilities, programs, goods and services.  What constitutes as a disability? Someone who has a physical or mental impairment that substantially limits one or more major life activities, or is regarded as having such impairments. Breathing, eating, working and going to school are "major life activities." Asthma and allergies are still considered disabilities under the ADA, even if symptoms are controlled by medication.*  I've researched it a million times, and I've said it outlaid a thousand, but every time it wows me.  

Don't go to the pumpkin patch!

Gabriels first Halloween

We all took our turns at the stomach flu this week.  Its never fun to share all the yucky things that go along with a stomach bug.  Gabriels cousin Ryder was weak, and lethargic, the big strong Uncle was stuck on the couch when it was his turn, and I didn't feel any better than they did.  When it was Gabriels turn to take on the big bad flu, he seemed to break the rules.

I expected Gabriels flu to be horrible, to knock him on his butt, and require a few days of recovery.  Sure Gabriel's food came up, and thats not pleasant for anyone, but he did abnormally well.  Gabriel jumped up, and bounced down the hall, and yelled, in a sing songy voice "Mommmm I feel much bettttterrrr now!"  Not quite.  He was threw up in his bucket several more times that day, and told me that his belly was hurting him.  At 8am, in between bathroom trips, he dressed himself, and got ready for the day, he had an incredible amount of energy, he was playful.  Im not sure if its his history of feeling yucky, or his tolerance, or maybe that 'normal' to him feels uncomfortable and painful to us......or maybe his body is a worse demon than any bug or virus- but the flu was not so bad for this little guy.

Like a turtle

Gabriel, Leo and his TeeTee

Last week, when we got home from school and work, Gabriel ran upstairs like he usually does to check on Leo.  Gabriel screamed "Mom help!!"

I ran to check on Gabriel- and nervous that the turtle would be cold and stiff.  Leo the tortoise, as he's technically called, was laying on his back in his water bowl.  He was floating in bile, or poop, or some kind of turtle bodily fluid.  I emptied his water dish, not knowing if Leo was still alive.  Then, his little turtle arm moved, and I exhaled.  I started thinking about our own lives.  Sometimes, I feel like we're stuck on our backs, kicking, wiggling, and rocking, but not able to turn back over without a little help from someone else.