MAINTENANCE IN DISNEY WORLD!!!!

Oh my goodness I can sooooo easily turn this post into just how amazing Disney is in and of itself. I could go on and on and on....
...but I am going to hold back and keep this post specifically about Disney after graduation.

Who knew Disney could get even better than it had been?!

(If you want to see a sampling of our other Disney pix- feel free to check out our facebook albums.)

WELCOME TO MY KINGDOM!

The first big change---
---instead of having to pay Jetblue prices, we were able to score a crazy deal on Southwest! Traveling with Southwest would have been impossible before OIT... you see- Southwest gives out peanuts!!! If you indicate 'peanut allergy' on the ticket, they will give out other snacks instead, BUT the plane could still be full of peanut dust from a prior flight and therefore we never in a million years would have flown southwest pre-graduation.

check out 'southwest' on the tail

Next---
---last winter break Coby was so sad he couldn't get a Ghiradelli milkshake since it still wasn't safe for him.                     
                                           This is from last year him begging for a shake

In that very moment we promised him once he finished OIT we'd get him a Ghiradelli milkshake the next time we were back. Well- that moment was upon us:

BLISS!

Later that day Coby happened to look up at the ceiling and said, "Mom, the ceiling has hives!" 

bumpy ceiling

Perhaps he was foreshadowing what was about to come...

...Unfortunately arrival day was not without its bumps, no pun intended. Coby ended up having a reaction post dosing. Thankfully it limited itself to just hives, but we had to page the doctor and ended up treating him.

We all deducted that the combination of not enough sleep (we had to wake up at 4AM), plus travel, plus the heat of Florida minutes after dosing (we walked around the hotel thinking that would be okay to do...) was too much for his body to handle.

Sigh.

While we were not off to a great start, the rest of vacation was fantastic. (Each morning Coby ate breakfast and then dosed. He spent the first period of observation time in the hotel. We then WALKED to the car. And then walked in the parks until close to 3 hours had passed. We didn't even allow him to go on any adrenaline producing rides til the end of the three hour window just to play it safe...)

In fact even that evening we were able to go to a restaurant that probably wouldn't have been safe for him pre OIT, but we didn't even bother to check! Coby only ended up ordering pizza and tater tots- but that restaurant served other things as well including having an entire dessert section as well as a fleishig section. This makes number three to our growing list of Disney changes post OIT.

people who order dairy had to eat on the patio (inside was for meat)

The fourth 'hurrah!' moment happened when I noticed a guy who was standing right next to Coby in line (for Festival of the Lion King), eating a bag of peanuts... and guess what--- I had zero heart palpitations! I tried to grab my phone to snag a picture, but the line moved forward and the guy was swallowed up by a swarm of people, so instead here's a pic from the show itself.

FANTASTIC SHOW!

Fifth- For the first time ever Coby was also able to go into Goofy's candy store in Disney Springs too. While the majority of it is not kosher, it is still amazing to go in to watch them make all those adorable concoctions. There were peanuts everywhere... but we didn't care!

Wow!

And one more pic from Disney Springs... because it has been our theme after all...

Sidebar--- at about this point I realized we were short 13 peanuts! I don't know how I miscounted- I thought I actually had thrown in extra peanuts... so we had to get to the store to buy more peanuts. At least they are easily obtainable!

Numero Ses- At the Magic Kingdom Mikey bought himself a Starbucks milkshake and Coby had some... and we didn't even check if it was safe!

I forgot to take a pic of Coby trying some, but here's Mikey with the shake
as we listened to the pianist at Casey's.

Another biggie, number seven--- for years I wanted to get the mini "Mickey's kitchen sink" simply because I wanted the souvenir 'pants' for my Mickey themed bathroom. Until now we never even bothered to check if it was kosher since there was no way the ice-cream parlour was safe for Coby.

And now?

All we had to find out was if it was kosher.

It was!

Was it safe?

Not a chance!

ATTACK!

Okay, you may have noticed that Coby is looking a bit different in the above pic than he was earlier in the post...
He had been begging for a haircut for a while now.
I told him if he really wanted one, maybe Disney magic could make it happen.
I still cannot believe I went through with it!
Upsherin take two...

BEFORE

                      DURING                                                                                  AND ME DURING

The barber kept asking, 'mom, you okay over there?'

AFTER

And after 9 amazing magical days it was time to go home... actually it was time to leave home to go back to Jersey. Back on Southwest we went.

AND, guess what--- while again they didn't give out peanuts since we indicated Coby's peanut allergy, Yitz found an open bag of peanuts in the pocket of his seat from the prior flight!!!! Yep,  before OIT flying Southwest would have been impossible!

On our specific flight they didn't give out peanuts and instead gave out cookies and pretzels. And even though those two items are obviously not peanuts, he wouldn't have been able to eat either one pre-OIT. The cookies seemed okay, but bakery items are always extra risky so we would have had to pass. And the pretzel label said...

Yep- that says 'packed in a facility that handles peanuts....'

He asked for another bag.
The flight attendant brought him two more bags.
Coby ate the entirety of both those bags... and asked for another.
The flight attendant brought him another TWO bags.
Coby ate the entirety of both those bags.
For those of you who are keeping track--- that makes 5 bags of pretzels 'made in a facility with'.
Coby asked for another bag.
We told him, "ENOUGH!"
What can I say?
He really loved those pretzels!

And if you were keeping track with me, that makes number eight ladies and gentlemen!
(And that doesn't even count that I didn't need to use baby wipes to wipe him down every few minutes to remove any possible peanut residue! Instead this year we used purell simply for germs sake!--- okay I'm counting that--- number nine!)

And I can probably keep on counting--- in past trips he had airborne reactions while waiting on line, and touch reactions from hugging a character and leaning on a banister. While the hives from day one did throw us for a loop quite a bit, he did not have any touch or airborne reactions for the first time in possibly forever. Numbers ten and eleven!

(I was also super excited that he didn't get sick this trip as he did during a number of past trips. I will chalk that up to our allergist's insistence he take a daily probiotic to help boost his immune system. :))

Oh my gosh what an amazing and unbelievable trip it was. If Josh were with us, it would have been as close to perfection as we could ever hope for.

I already miss it so much!

The absolute worst part of Disney... is leaving.

Literally. Tears.

Tomorrow we are going back to the allergist for his 6 month post graduation check up. Another skin test, another blood test. (here's hoping the blood test is not as traumatic as the last one, and doesn't bring about a reaction like the last one did.)  We will also discuss his latest reactions and what to do with peanut butter going forward...

I miss my Disney bubble!!!

Sidebar---- one part of Coby's haircut that isn't too visible from the above pictures is all the 'pixie dust' they pour on top (if requested, which he did.)

And as I was writing this blog post, 2 full days after this hair-cut Yitz was spending close to an hour soaking Coby's head and trying to get all those sparkles out. It's nearly impossible!
What can I say... pixie dust is resilient!

And one last new Disney item for this post (there are actually many many new Disney things that appear each year, but to stick with my Coby-bear theme, I'm posting this specific one). Disney has a brand new fireworks spectacular unlike ANYTHING you've ever seen, GUARANTEED!!! It is called "Happily Ever After". And while the nostalgic part of me will always miss the "WISHES" fireworks, the lyrics of the HAPPILY EVER AFTER song works very nicely for what Coby has accomplished since his last Disney trip:

Feel it draw you in

Watch the moment unfold

Spark a dream that we're meant to follow

Setting out for a new tomorrow

Every step we take brings a new hope

A new day

Every choice we make helps us find our own way

Every wish finally put into motion

Diving in with our hearts wide open

The story comes alive when we look inside

A new adventure there in your eyes

It's just beginning

Feel your heart beat

Faster

Reach out and find your

Happily ever after

Find your happily ever after

Now we're on our way

Leave our fears behind us

Not so far away from the dreams

That live inside us

Moving down this road we've chosen

There's no limit to where we're going

The battle

The stories

The losses

And all the glories

We're changed by the way we live every day

Just look up and reach to the sky

We all have the courage to fly

WAS SUPPOSED TO BE A BORING BLOG POST

Just a couple of days ago I was thinking I should post a quick update.

About how boring it's been. How wonderful it's been.

No issues at all.

Enjoying freedom.

Ate dinner at someone's house without looking into anything.

Ate junk at a school party with no worries.

Went to his cousin's wedding and was able to eat whatever he wanted without us having to talk to the caterer!   

Went on his first playdate at someone else's house EVER (and it was even a sleepover) with no worries.

But then Thursday happened.

It was time to try peanut butter again.

Ever since his reaction nearly six weeks ago we had dropped the dose back down to 2 tsp and had no problems.... until Thursday. (though I must admit I am second guessing myself--- what if all the other times he simply didn't complain so I didn't bother checking him- and maybe he was reacting but I was stupidly clueless--- argh, hand to forehead... from now on I need to check him whenever he has peanut butter....then again Yitz always smears Coby's cream on him at bedtime, so Yitz would have felt hives if he was having a reaction... argh)

Usually we do our peanut buttering on Saturdays... but something told me to do it earlier than then. I told myself if Coby reacted Saturday we may have a problem getting on a plane early the next morning. I also didn't want to dose him Friday because I worried if we had a problem and had to page the doctor we'd be using a phone on shabbos, so Thursday it was....

He dosed.

Minutes after dosing he complained that his inner upper lip felt all swollen.

That was a strange comment.

He never ever said anything like that before.

Yet it wasn't visible to anybody.

He insisted inside his mouth it felt all swollen.

We rinsed him with more water and a few moments later he said it was much better.

He didn't complain again.

Just before he was going to go to bed (nearly 5 hours post dosing), I called up to Yitz, "You know what? Check his body before you put him down. That initial comment he made still concerns me."

Moments later--- "Stacey, we have a problem." 

 

CRAP. He was covered in hives.

We paged the doctor who instructed us to start off just dosing him with benadryl and if there is no change we should add the steroids and keep watch.

The doctor said for whatever reason there is something in the peanut butter that Coby's body cannot handle; that he is not getting coverage from by dosing with regular peanuts.

He also said that there have been studies that showed that if some people try to switch dosing even between raw peanut and roasted peanuts they also have issues.

We purposely had only been dosing Coby with the ROASTED peanuts because they are the most highly allergenic ones. We wanted to make sure that we were desensitizing him to the worst of the allergen.

And so we did thinking we were completely covering him.

But this peanut butter. 

ARGH!

I don't really get this peanut butter problem. I mean, the kid passed his 24 (roasted!!!) peanut challenge which allows him to free eat--- yet peanut butter equivalent to just 10 peanuts can cause him problems? I don't really get it.

There are many theories out there as to why peanut butter can be problematic to some including:

-Peanut butter gets absorbed a lot quicker than peanuts and it hits the system too fast

-That peanut butter is very sticky and perhaps it is coating the esophagus and staying there instead of dissolving like regular peanuts.

But really nobody KNOWS for certain why it is.

Dr. Selter said we have to come up with a new plan. He thinks we will have to start acclimating Coby's body to peanut butter by having him dose with it a lot more frequently and starting at a much lower level.

We told him we are about to go to Disney and really do not want to deal with this risk there and the doctor agreed to only dose him with his 12 peanuts while there, and to call him when we get back so he can formulate a plan for Coby.

Coby actually also has his second post OIT skin and blood testing the week we get back as well.

(Some people have suggested to ask if we can try PB2 powder instead of actual peanut butter. It may cover the necessity of needing to do peanut butter without being so sticky. We will have to look into that as well.)

Needless to say, Coby slept in my bed all night long. And like a mom of a newborn I kept putting my hand on his chest every few minutes to make sure he was still breathing. By morning the hives were basically all gone, thank G-d. It was another difficult night. This OIT thing can be so nerve-wracking at times.... but so very worth it! 

TOMORROW Coby may be getting his long awaited for ghiradelli milk-shake that was promised to him once he finished OIT. He is soooo excited and I cannot wait for him to get that long awaited for reward.

Ghiradelli in Disneyworld...

We are actually flying SOUTHWEST for the first time. He no longer is stuck to JETBLUE!!!! Though I must admit we still had them note his peanut allergy on his ticket, after all he does still have the allergy, and probably always will. And if we want to preboard (um, yes please), they will allow us to do so.

But what amazing newfound freedom that I no longer have to be a freaking nervous mess about him having a reaction 30,000 feet up to something somebody else is eating!!! (we were instructed to make sure Coby does NOT ever dose and eat actual peanuts up there just in case... but not having to worry about a touch or airborne reaction is so freeing.)

Of course I am still nearly hyperventilating with the idea that in just 12 hours time I need to step foot on that airplane... but it's nice to know that now it is only my own fear about planes and no longer the fear of my son having a life-threatening reaction up in the clouds.

Breathe in.

Breathe out.

Ghiradelli here he comes!!!!!