Day Dreaming

Living with a LTFA (life threatening food allergy) is kind of hard to describe.  Our life is normal, but not.  We monitor all food, read labels, call manufacturers, visit many doctors, skip most restaurants, bring food with us, carry epinephrine, never fly, spend scads of money to have safe treats shipped, rent houses instead of hotels (we need the kitchen), and have been known to put the house on lock-down and watch Sydney like a hawk if she coughs a bit too much or looks a little red in the face.

Most of the time we take it in stride.  Sometimes I will see family and friends post pictures on Facebook of food porn from restaurants they are visiting or outings to ice cream shops and, I admit, feel an overwhelming sense of loss for what Sydney has never been able to experience.  Now, if you are one of said family or friends who do this, please don't stop!  Because of OIT your pictures are now providing inspiration and give us something to look forward to!  That's one of my favorite past times lately - dreaming of what life will be like for Sydney once we're done.  Hey, I need something to get me through those 9 hour car rides!

During a recent visit to Dr. Nash we discussed what "graduation" will look like for Sydney.  I was under the mistaken impression that she needed to eat 24 peanuts.  Plain roasted peanuts.  Dr. Nash let her know that she could bring in any kind of peanut food she wants.  She will keep eating until she reacts or she doesn't want more (sort of).  She's still got to eat at least the 24 peanuts.  So we instantly started dreaming about what she would bring for the appointment.  Snickers, Pay Day, peanut M&M's, Reese's, a jar of peanut butter.  It's overwhelming to think about and, being the mom that I am, I started tearing up at just the discussion.  Fortunately, I waited until Dr. Nash had left the room so that he only suspects I am a raving lunatic and has no proof.

There is some disagreement, but generally there are about 27 peanuts in a Snickers.

When we started this OIT journey, I asked Sydney what she was most looking forward to.  "Oreos."  I tried to explain that no, she could have anything, go anywhere, eat at any restaurant.  Melting Pot?  A trip to Europe (hey, I can dream too!)?  Nope.  "Oreos."  After our conversation with Dr. Nash though, she started getting into the spirit of my question.  Dream, my girl.  And dream BIG.

Pocky was high on her list along with the Oreos.  These are cookie sticks dipped in chocolate.  Many of her friends rave about them and, with a cross-contamination warning on the box, they have been off-limits.

Sydney has never been able to get anything from a bakery.  I've always made her birthday cakes.  I don't stink at it, but I remember the sadness I felt (when she was 3 years old because, yeah, I'm all kinds of OCD and worry about things 30 years in advance) when I realized that I would have to make her wedding cake.  It hit me the other day that once she graduates OIT that won't be the case.  I mentioned it to her and told her she can get a cake from ANYWHERE once she is done with OIT.  We used to like watching cake decorating shows on Food Network (Ace of Cakes comes to mind) and I expected her to say one of those locations.  Nope.  Without hesitating, she asked for Sidney.  Sidney Galpern is a friend of ours who discovered her life's work at a very young age.  She owns Simi Cakes & Confections and travels internationally teaching classes, sells her own line of cake decorating accessories, has provided cakes for Extreme Home Makeover, and has her own YouTube channel.

I've also, finally, talked her into a trip.  Alas, not Europe, but she decided that once she graduates she would like to go to New York City.  FLY to New York City, of course.  A week full of Broadway shows, site seeing, and NYC restaurants.  I cannot even imagine.

Life is a Highway

One of the biggest challenges of Sydney’s OIT journey has been the actual journey.  She and I travel 9 hours each way, twice a month, from Florida to North Carolina to see Dr. Nash.  The first question I always get is, “Are you crazy?!”  The second one is, “Isn’t there a doctor in Florida that does this?”  The answer to both is, quite emphatically, “Yes!”

Choosing to be treated by a doctor so far from home was not an easy decision.  There is one doctor in Florida who has experience with milk OIT but, at the time we wanted to start, no peanut experience.  Call me crazy, but I wanted to stick with the doctor with the most experience and the most scientific, conservative protocol.  Dr. Nash provides and weighs all doses of peanut flour and sends me home with precise amounts.  Some protocols mix a small jug with Kool-Aid and flour, telling the parent to shake well and pour out a measured amount.  Other protocols involve eating peanut M&M’s in increasing amounts.  I know many moms who handle these systems just fine, but I just didn’t feel confident in myself to be precise all the time.

So, that’s the long answer as to why we load up and hit the highway so often.  The drives are pretty simple – literally a straight shot up I-95 nearly the whole way.  We have our routines already established.  The same exits up and back in GA and SC.  Thank god for Starbucks along the highway too!  They've saved me more than once.  

Our favorite exit in GA - Starbucks and Krispy Kreme in one building!  

Between the caffeine and the sugar, we won't fall asleep for days.

Fortunately, we both have similar car trip styles (i.e. music, rest stops, food, etc.).  Unfortunately, the ride has proven to cause a delayed stress explosion for Sydney.  The entire ride is fine.  But, more than once, she has let off steam upon hotel arrival with a burst of crying, yelling, or just plain meanness.  No, it’s not being a teenager.  This is totally out of character.  (She is really an incredible and kind person.)  So, we are trying to come up with a few relaxation and calming rituals for her upon arrival.  So far nothing has worked, but we are open to suggestion.

One way we stay sane on these endless road trips is to convince friends to travel with us.  Sydney has some wonderful friends and a pretty awesome boyfriend.  Twice we’ve been lucky enough to have company for the ride.  I’m not sure these poor kids know what they’re getting themselves in to when they decide to come, though.  “It’ll be FUN!  Piece of cake!  9 hours goes by SO fast!”  (At this point, I don’t think they’d believe me if I told them the sky is blue.)

Visit to the mall and PF Chang's with a friend.  

Sydney wore a Lolita fashion dress she created.

It's de rigueur to stop at South of the Border.  

If nothing else than to marvel at the ghost town.

During Nut Watch 2013 in December we learned that our 10 year old, beloved Honda Odyssey was definitely a Florida girl.  She did NOT like the cold weather and protested repeatedly (cruise control wouldn’t work until we hit GA again, doors slid open reluctantly, ice formed on the inside of the windshield, the radio refused to squawk – not cool with a teen in the car!).  I knew we would have to replace her before next winter, but she had other ideas.  In late April and early May she literally started falling apart.  The timeline had to be accelerated (much to my husband’s dismay) and on Mother’s Day, Scarlett was born.  Scarlett has a complex personality and we are still learning how she operates.  It’s become a joke that every week I still find something new.  I’m thankful to have such a safe, reliable, and comfortable ride for the next two years for our insane amount of traveling!  

Meet Scarlett.
She's already carried us 8,686 miles in just 78 days.