DOSING AT DISNEY (WHICH AT TIMES WAS QUITE A DOOZY)

Well we're back from Disney. And post-trip depression has set in. There really is no where in the world like Disney. But now it's back to real life. We may have taken a vacation from reality but never a vacation from fighting Coby's adversary.

In truth, parts of dosing in Disney ended up being a lot easier than I expected while other parts ended up being a lot more stressful than I anticipated.

Coby had no idea we were even going to the world and we revealed the surprise in the car!

Clip of the end of the reveal:

 Once we got to the airport to add on to my regular nerves regarding flying, I was also nervous about getting a cooler of ice and liquid doses through security. TSA simply put it through the 'black box' to test it for explosives and let us through- no problem. PHEEEEW. After all, we wouldn't have been able to go without Coby's dose! As usual we had priority boarding

First one to get on the plane- priority boarding- perhaps won't be necessary after OIT?!

in order to speak to the flight attendant's on board and to wipe down our area. And before we knew it we were in Disney!!!!

Once we got to our hotel I proceeded to dose Coby and unpack while Mikey and Yitz went shopping. After the first hour was over, Coby and I were bored waiting in the hotel room so we decided to explore the hotel.

chilling after dosing

It is massive.
There is even an internal busing system to drive from one section of the hotel to the other. We began to walk around, enjoying the Florida weather.
And then the skies opened.
During a downpour your instinct is to RUN! Instead I kept shouting (over the sound of the pounding rain), "YOU ARE WITHIN YOUR TWO HOURS. DO NOT RUN. WALK. DO NOT RUN. IT'S ONLY WATER. IT'S OKAY! DON'T RUN!"
We were in the middle of nowhere without a building in sight. There were "you are here" maps but I am map illiterate. We got soaked to the bone and decided to enjoy it.BECAUSE WE WERE IN DISNEY!

Eventually we found our way back to our hotel. It was as if we jumped into a swimming pool with all our clothes on. We hung up our sopping clothes and tried to blow-dry them a bit. Whatever. Didn't matter.



The following morning (and the rest of the trip) Coby's dose would be given minutes after he woke up. He would wake up, eat cereal, get dressed, brush his teeth and then dose and watch tv as the rest of us got ready to go to the parks. While our usual disney instinct is to HURRY HURRY HURRY. I had to keep reminding all of us, "Don't rush, just walk. We're not in a rush. It's still within Coby's two hours." We also had to make sure not to go on any adrenaline pumping rides within that time period because we needed to keep Coby's heart-rate down. At one point we almost headed to ROCK N ROLLER COASTER in Disney's Hollywood Studios but then I remembered, "Oh wait- we're in the two hour period, we can't. We'll do it later."

The first day in Epcot went without a hitch. WOOT WOOT. We got this. We can do it!!!

And then our second morning arrived and Coby woke up and his cheeks were flushed. "Oh shoot we forgot to lotion our faces yesterday." 
And then I felt Coby's head.
HE FELT HOT! (to me). Yitz felt his head too and disagreed, "he's fine." Now Yitz isn't very good at checking if someone has fever. There were times Coby had over 102 and Yitz thought he had nothing.
"I am telling you, he has fever. We can't dose. What do we do. We don't have a thermometer either- we can't even check!"
(Luckily last minute I had decided to pack ibuprofen figuring with all the walking we had to do chances were Coby's legs would be hurting him a lot, so at least I'd have something if it got too bad.)
I gave him ibuprofen while panicking how to go ahead and dose the kid!
We tried tracking down a thermometer but the closest place that was open at 7AM was a half hour away each way. I had already given Coby ibuprofen so by the time Yitz would get back his possible fever would (hopefully) be gone. The urgi-care centers were not yet open, and we weren't going to rush to a hospital with a kid who verbally was insisting he was fine and Yitz and I disagreeing whether or not he even had a fever in the first place.
BUT YOU CAN'T DOSE WITH A FEVER!
We paged the allergist and explained our predicament. She told us to half dose him, get a thermometer by the next day and call her again the next morning before his next dose.
I asked Coby if he felt okay telling him we can stay in the hotel room and he can rest.
"NO WAY AM I STAYING IN THE HOTEL. I'M FINE. I'M GOING TO MAGIC KINGDOM!"
We brought ibuprofen with us and gave it to him every 6-7 hours just in case.
Coby did great.
He had a fantastic day.
That night Yitz bought a thermometer.
But we couldn't check Coby for fever when we got back--- because he had ibuprofen in him.

The next morning we took his temperature.
99.3.
Hmmmmmm so very low grade.
Some validation for me that perhaps he DID indeed have a fever the day before but relief it was so low now.
We paged the doctor as per our instructions.
She told us as long as it's in the 99s he can have his full dose.
PHEEEW!
So we full dosed him and he had no ibupforen the rest of the day.
He had an amazing day in the parks.
His head felt cool the entire day!!!!
We got back to the hotel that night.
We got him ready for bed.
I felt his head.
HE FELT HOT AGAIN!
We had our thermometer....
102.6
WHAT THE HELL?????
It didn't seem like the ibuprofen was bringing the fever down, so again Yitz went out to the store to pick up some tylenol so we can piggy-back the ibuprofen with the tylenol.
Sigh.

"Yitz we got to take the kid to the doctor."
The urgi-centers were already closed.
Crap
We called concierge about having a doctor come to our room and found out it would be quite expensive since they don't take our insurance.
We know 102.6 isn't an emergency and can wait until morning but I was up until 4AM panicking. Panicking about our ruined vacation. Panicking that we would have to skip dosing or down dose for sure. Re-working all our fast pass appointments in my head, changing around our schedule. Panicking we were about to lose weeks of up-dosing and lose all the progress we had made.

We've actually done this before. Coby's gotten sick in Disney before. We've taken him to urgi-care center before.   So we planned on paging the doctor.

Centra care Disney 2012

BUT WE WERE NEVER DEALING WITH IT WHILE DOSING.
Again.
And we planned to be at urgi-care as soon as they opened at 8AM. I told Yitz if Coby was fine and doctor said he's okay to go to the parks we'd still have to rent a stroller because it wouldn't be fair to make Coby walk around all day if he's not feeling well.

The alarm rang a few hours later.

I felt Coby's head.

AS COOL AS A CUCUMBER.
WHAT THE HELL?
(BUT YAY!)

I take Coby's temperature.
TWICE to make sure.

97.7

We didn't need to page the doctor!!!! We were able to full dose him!!!! He was able to go to the parks!!!! Poof he was fine!!!! Just like that.

My nerves were shot. But thankfully this back and forth thing was over. He only had to down-dose one single day and our vacation was able to proceed.

(And ironically even if we weren't going to Disney and Coby was physically available to updose last Thursday- the doctor NEVER would have allowed it due to the fever the night before. So if we had to skip an updose- might as well have been in Disney!)

Each morning Coby woke at 7 to eat. Dosed at 7:15.

Dosing in Disney

We left the hotel around 8. Walked leisurely to the park and waited for it to open and usually after the first couple of rides Coby's 2 hours period was over and he was then able to jump and run around and enjoy the rest of the day!

Coby did have a few skin reactions during our trip.
One day he had a rash all over one of his cheeks that lasted through a night.

 Another day he had a single hive popping up on another cheek.

I didn't panic. I know this has happened before. And I know that even though we are now at 15mg in dosing, that skin is the last organ to forget an allergy. There is even a girl who is already EATING full cashews in her OIT process, yet when she touched them her hand would break out in hives. I did take a picture of Coby's face to bring to the allergist when we can hopefully updose this Thursday.

On Friday we switched hotels. Our room was not ready for us yet so they said they would hold our luggage and food until it is. They said not to worry about our 'refrigidables' that they would store it safely for us. We were very nervous about something happening to Coby's fragile dose and Yitz drilled it into their head. "This medicine is life/death. We cannot get a replacement anywhere around here. His doctor is 1,000 miles away. NOTHING CAN HAPPEN TO THIS MEDICINE, DO YOU UNDERSTAND THIS?" They wrapped it up with 'fragile' stickers and hand carried it to the fridge (originally the glass jars were hanging from a luggage rack where it could have bumped against each other and shattered.)

Thankfully, later that day the jars made it safely to our hotel fridge and once again I was able to exhale.

After four straight days in the parks we decided to hit Disney Springs on Friday. We had read that Ghiradelli no longer makes their peanut butter float in order to be more allergy friendly--- they don't use peanuts! WOOT WOOT! Coby was very excited about the possibility of it being safe for him and to be able to try his very first milk-shake.

Coby pleading for this to be safe as Yitz goes in to talk to the manager

But it was not to be.
Unfortunately when we went in to talk to the manager, they told us their ice-cream is still made on equipment that uses peanuts and wouldn't be safe for Coby.
Coby was sooooo disappointed. We promised Coby that on our next Disney trip when OIT was over he would get a milkshake all for himself.
We even shook on it.
In another store Coby saw a Chip & Dale peanut mug & automatically hid his face. It's second nature now, lol.

Even though Coby couldn't get Ghiradelli--- he was able to have a Dole-whip when we were in the Magic Kingdom. Kosher. Nut free. A disney staple!

He was amused to see 'fake peanuts shells' all around the Dumbo ride too.

PICH TO PEANUTS! (fake ones around dumbo ride)

The rest of our trip went smoothly with Coby's dosing! He even rode every single ride he was now tall enough for that he hasn't ridden before including Space Mountain (hated)

Primeval Whirl (loved), 

Loving primeval Whirl

He loves, I hate

                                                    Mission space orange side (loved), 

Rock n roller coaster (loved), 

he looks terrified but he loved it!

I on the other hand, did not.

 And finally our trip had to come to an end. 

Sigh.
At the airport I told Yitz to handle TSA and the the doses this time around. This time they unpacked our entire cooler and had him open the jars and swipe at them with some type of litmus test before putting it through the black boxes.
Once again we got priority boarding so we can wipe down our area.

Then the flight-attendant went to each row to ask them not to eat anything with nuts "because we have someone with an allergy on board."  "Hey, I have a nut allergy!" Thankfully no grumblers! (And he was too cute!) And who knows, perhaps due to OIT this will be the last time we have to travel this way!

Flight attendant going row to row asking people not to consume things with nuts.

She even came to our row to tell us the same thing- even though she knew it was our row with the allergy. I mouthed 'thank you' to her, appreciating the discretion- knowing that some people groan and grumble about having to accommodate an allergy so she was trying to make sure not to single us out. BUT Coby is proud about himself and loudly vocalized,

Our plane had also ended up being delayed nearly two hours. While on the one hand, "yay, more disney time," Coby needed to have TWO doses on the day we left (9-10 hours after his first one) in order to get back onto his regular schedule. I knew he had to dose by 6:15 the absolute latest to get back on his schedule of 4:15 dosing. We had hoped to come home, have him take a shower then eat and then dose- but due to the delay that wasn't going to happen. We had to grab a pizza pie on the way home and have Coby down it in the car. There was no ninety minute lee-way anymore before his dose or after his dose and before bed so we had to skip his bath, but he downed dose number two at 6:10PM with no issues at all!

WAY TO GO COBESTER!

So here we are, back in the grind and hoping to be able to updose tomorrow!

You just gotta believe in the magic and anything is possible!