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.