Friday, July 22, 2011

Why we don't visit more

Along the lines of my recent post on declined birthday party invitations, we don't visit much either.  Friends, family, near, far, it makes no difference.  We are just not much for traveling these days whether it's across the country or across town.  It's not that we don't like you.  In all probability we really truly do.  After all you're sweet, charming, so very generous to invite us in the first place and (blush) you read my blog!  

But here's the deal.  Dinner parties stress me out.  As a fully indoctrinated Midwesterner the rules of politeness prevent me from coming right out and saying it, but most of the time, going anywhere there is food with my kids just plain sucks.

The preparation - yes, we feed them dinner before we leave even if the invitation says 3 pm, the packing (epi-pens, Benedryl, Tupperware or other vomit catching device, full change of clothes for Roo, soy milk, safe snacks, safe treats to deploy in case of meltdown, clean shirt for me, 2nd safe dinner to eat on location, the list goes on), the worry (Are there nuts in the house?  Does the pasta they made for the kids have egg in it? Do you still have the package from those crackers?), and the unknown - my kid could burst and vomit strawberries all over your plush white carpet at any moment.  It's just a lot to deal with.

Then there's the weight problem.  It doesn't matter what's for dinner, how adorable the plates are, or anything else.  Roo simply does not eat well away from home.  Maybe that's most kids, I mean, parties are supposed to be prime time for grabbing a couple of bites here and there and topping it all off with a yummy treat.  But that doesn't fly for Roo.  And unfortunately, he doesn't make up for it with a yummy calorie rich party dessert the way other kids might.  He wants a Dum Dum lollipop and a cup of water.  One poor meal for him means lost ounces.  And too many of those lost ounces are when the doctors start talking about g-tubes and strict elimination diets. 

So this is my confession.  Please forgive me for being an ungrateful guest.  I am trying.  I know it's not fair to always come to our place.  I know we've got to learn how to "live" with these issues, but in the interest of keeping my blood pressure intact, please do allow me my baby steps.  And to all of you who keep inviting us anyway and strive to keep things nut-free and Roo-safe when we're around, who trudge to our place through both snowstorms and heatwaves from near and far, and don't roll your eyes when I read every single one of your ingredient packages for the 5th time, it means the world.  Thank you!

Wednesday, July 20, 2011

Thanks for the invite, but...

I just received an invitation for a fun 3-year-old birthday party for one of Roo and Bean's little school friends.  The birthday boy is a sweet kid and I like his mom a lot.  Several of their friends will be there.  It's not too far away.  Doesn't interfere with nap.  Super.  Except that it's at an ice cream parlor.  A nut-crusted, egg-laden ice cream parlor.  So, as usual, we politely declined.

Yes if I really wanted that mom of the year award I could probably make this happen.  The routine would go something like this:

1. Call J's mom and warn her of Roo's allergies.  Plan to accommodate him while causing least disruption possible at party.  Reject her compulsory offer to provide a "safe" treat and tell her I'll handle it. 
2. Call ice cream parlor and ask about ingredients in ice cream as well as procedure for accommodating allergies (for example, changing gloves, opening fresh containers, using clean scoop, etc. to avoid cross contamination)
3. Bring back-up safe treat even if person on the phone promises on grave of loved one that none of their ice creams contain a trace of egg, nut, apple, peach, or beef (gross)
4. Arrive on party day feeling like my pants are lined with barbed wire at the prospect that a stray peanut or swipe of butter pecan accidentally migrated onto the table where Roo is sitting. Scrub table and chair with antibacterial wipes.
5. Ask person at counter AGAIN about all ice cream ingredients (usually we just stick with vanilla but it often has eggs in it  so we need to be flexible).  Possibly find a "safe" flavor. Ask for a fresh container to be opened, clean gloves, and clean scoop.  Allow irritated glares of busy counter staff to bounce off my skin like rubber balls.
6. Sing Happy Birthday to J
7. Hover over Roo as he eats exactly 3 tiny bites of ice cream, continuously examining his legs and belly for first signs of a reaction, and completely ignoring Bean, who by this time has surely climbed into her own oversize bowl of mint chocolate chip and is swimming in the greeny goodness. 
8. Leave party as quickly as possible to avoid the potential vomiting that's likely to occur after eating, allergies or not. 

So, yeah, I think we'll sit this one out.

Saturday, July 16, 2011

Molars and more

Roo is back at speech therapy.  We've been fortunate to squeeze him in for one visit per month for now, down from the once a week standing appointment he used to have.  After a lengthy letter writing campaign from our Pediatrician, GI team, ENT, and our Speech Therapist, Cigna has agreed to cover Roo's feeding therapy after all.

All I'm going to say is this: Hey, thanks, Cigna, for coming around and seeing the light and not making us retroactively responsible for several thousands of dollars in therapy fees, but next time, it would be super helpful if we didn't have to cancel all our upcoming appointments and revisit the waiting list while you sort your sh*t out.  Now we fight to get him back on the regular schedule. 

In other oral news, Roo is finally getting his two-year molars.  One is through the gums, one is visible and starting to poke through.  The two on top are yet to come.  Yes, he'll be three and a half in September, my little late bloomer.  At least now we know he has more teeth.

Friday, July 15, 2011

Voting for CURED

I'm not usually a sweepstakes kind of girl, but this one is near and dear to my heart.  On August 27 Vivint Gives Back Project will award 2.5 millions dollars to various charities.  

One of the charities in the running is CURED Foundation - a fantastic organization that has been working tirelessly to raise money for research on eosinophilic disorders since long before Roo was diagnosed.  They work closely with the Cincinnati Children's Hospital, which is at the absolute forefront in research on eosinophilic disorders, and where both Bean and Roo are currently participating in a twins study on EoE.  So, obviously, we would be thrilled to see them receive this generous donation.

Basically, the public votes for the next several weeks for their favorite charity.  On August 27, the charity with the most votes overall, will receive $250,000.  In addition, each charity that receives the most votes in its region, will receive $100,000.  Not too shabby, eh?

The top charity at the moment is located in CURED's region (central region) which means that if we can maintain enough votes to be in 2nd place in our region, CURED will receive the $100,000! The problem is, we're currently in 3rd place, but it's by approximately 30 votes?! Just 30 votes are separating my boy from a $100,000 donation for CURED foundation.  So please vote if you can.  Daily if you'd be so kind.  Yes, it makes you login to Facebook but the whole process takes 15 seconds.  Just click on the link below to get started. 

Vote for CURED - Vivint Gives Back

Thursday, July 14, 2011

Summer break

In the event that anyone is still out there reading this after my 2 month hiatus, I'm still here.

I've received a few concerned phone calls and emails asking if things are either really really good or really really bad with Roo and if that's why I've been MIA for a while.  So to clear up any doubt, things are neither terrible nor great with us, mostly status quo, in fact.  It's just, the kids are on summer break.  And I've been trying to work out.  And honestly, that's about all I seem to be able to handle on top of the day to day.  

It's pathetic and perhaps selfish too, but I'm in a good workout groove and I'd like to stay here for while.  The downside of course, is that after warning the children repeatedly to interrupt me only in the event of a true emergency while I work out, then requesting further compliance so I can squeeze in a shower, it just seems terribly unfair (and unrealistic) to expect them to leave me alone for another half hour so I can answer emails and update the blog.  So I haven't.

What we have been doing instead is our own version of summer school, or as they dubbed it, "Mama School".  We're covering all kinds of topics from Spanish language to circuit training.  Turns out 3 and 5-year-olds are wired for circuits.  They adore 30 second intervals.  It goes something like this:

30 seconds each
  • Frog jumps
  • Sprint around cones
  • Jumping jacks
  • Crab walk
  • Forward rolls
  • Rest/water break
  • Do it again
Don't worry, I'm not a drill sergeant.  We're having fun in plenty of other ways too.  Pool trips, playground, art projects, nutrition lessons and cooking class (strawberry picking followed by strawberry fruit leather making was a big hit), Simon Says in Spanish, etc., etc. We're trying something new every day and for the most part everyone seems pretty happy.  Love summer.