SEIZE THE DAY!

It's been ten days since our last updose but now the time is here again. We are four months in and Coby is up to 1/7th of a peanut!

Last night we went to see Newsies- well sort of. Yes, it was the Broadway show---- but shown on a movie screen. I had wanted to see Newsies on Broadway since it had first come out--- and finally, about three years ago, Mikey and I had tickets to see it. We scored 25.00 a seat tickets through his cub-scout group to see it on Mother's day. It was going to be Mikey, myself, my in-laws and the cub scout group. However my back had other plans. Seemingly out of the blue it went out on me. I told Josh to take my ticket, so at least he got to go. I spent the next eight hours or so on the den floor unable to move. (TMI- when I had to pee I couldnt get to the bathroom so Yitz brought me one of Coby's old diapers that we still had. FYI- It's not so easy to force yourself to pee into a diaper even when you really gotta go!). Once Josh & Mikey got home and I had Coby coverage we called the ambulance. What a memorable mother's day that was! I spent the next few days in the hospital and the next few weeks in bed, began to use a walker and had many many doctor appointments. I am still on 'back watch'- but am trying to keep that extreme from happening again.

So why am I rambling? BECAUSE BACK THEN I DIDN'T GET TO SEE NEWSIES.... AND THEN IT LEFT BROADWAY. THE AUDACITY!!!!

Imagine my excitement when I learned that for just 3 days there would be a showing of Newsies on Broadway!

http://www.playbill.com/article/why-disney-decided-newsies-was-ready-for-the-big-screen 

The first showing was last week. Second one was shabbos afternoon. And the third one happened to fall out on my hebrew birthday. Newsies 3D on mother's day may not have worked out---- but Newsies 2D on my 'yom huledet' did---- and it was sooooooooooooooo good!!!!

About 45 minutes into the show Coby said, "mom there is popcorn stuck in my throat and I can't get it out.' Now, Coby WAS actually eating popcorn and it is completely feasible that popcorn can get stuck in one's throat, but I'd be lying if I didn't say that I did panic for a bit (internally). I knew the popcorn was safe. I had wiped down the movie seat chair. He was out of his two hour window of dosing. But.... I also knew that a sign of a reaction is the feeling of something getting stuck in one's throat. I watched Newsies with one eye and Coby with my other eye, and thankfully---- sometimes 'popcorn being stuck in my throat'- is really just that- popcorn stuck in one's throat.

                                  We all loved Newsies!

Josh wasn't with us (college-boy) and this was Mikey's second time seeing it- first time being on Broadway that mother's day. He loved it all over again and even said, "this time the seats were so much better!"

Broadway plus a Disney show- I mean does it get any better than that? The storyline. The dancing. The music. The lyrics. And how appropriate some of those lyrics are the night before another updose.

Now is the time to seize the day

Stare down the odds and seize the day

Minute by minute that's how you win it

We will find a way

But let us seize the day

Courage cannot erase our fear

Courage is when we face our fear...

Facing our fears, being courageous one step at a time and that is what brings us here to what I thought would be our second to last liquid up-dose!

...but I was wrong--- there are still two more liquid updoses after today. His last liquid dose will be twice what I originally thought. 

Same ol' same ol- full system checks. Up-dosing. Checks after 20 minutes followed by check by the doctor. NICE AND BORING- just the way we like it (well mostly- his throat sounded a little bit phlegmy at one point, but it fixed itself.) Coby spent his time playing on the phone, doing homework and forcing, um I mean inviting me to play Pokemon cards with him.

up-dose in progress

I am sooo thrilled to be playing Pokemon, can't you tell? ;)

I had asked the doctor to give us some extra peanutty liquid since it has been hard to get my fingers and syringe down into the jar and pull up the dose without any air-bubbles. We managed- but we had to tilt the jar and were always nervous it would slip and shatter. So she switched us to a cute smaller, but fatter glass jar. That made me happy. Joy is in the little things.... 

                           FROM THIS:                                                                            TO THIS:

Coby's dose this week was lower than the second to last
 white line, it was quite a feat to get my fingers and syringe
in there and no air bubbles out.

 

The doctor also prescribed him a steroid to have more ammunition 'just in case'. 

So anyway, I had thought our final liquid dose was going to be 50mg and our first peanut flour dose would also be 50mg (kids tend to react when you switch their allergen form so they hope to minimize the risk by 'same-dosing' in a new form), but it turns out our final liquid dose will be 100mg (gulp- that would be DOUBLING up from the 50 which is next time) and our first flour form will also be 100mg. The doctor though decided that it's time for her to give us his capsule prescription so we can get to the compounding pharmacy/apothecary before that first flour 'same-dose' appointment. HOLY MOLY! I cannot believe I now have the prescription for step two in my hand!

Check out those numbers---- those are big jumps. The last few liquid up-doses were in much smaller increments (5 to 10 to 15 to 20 to 25 to 37.5 to 50).

A single peanut has 250-300mg of peanut protein in it. His final capsule dose seems to be the equivalent of 1.5-2 peanuts!

She told me that when she switches him to actual peanut form they will either down-dose him to a single peanut or more possibly just HALF of an actual peanut.

Do the math.
A single peanut would be about equivalent to his second to last capsule dose.
Half a peanut would be equivalent to not even his second capsule dose.
Look at his prescription again---
Those numbers are ginormous.
Those numbers are exciting.
Those numbers are terrifying.

Yet they would down-dose him significantly from the above when beginning actual peanut form.

OMG. ACTUAL. PEANUT. FORM. (why do I insist in getting ahead of myself?)

I know I know, the doctor said a microscopic amount can kill him and we are way beyond that.
I know I know, the doctor said something smaller than 1/100th of a peanut can close his throat in seconds and we are way beyond that.

BUT

What remains in MY very vivid memory is Coby eating two goobers (and a peanut in a goober is smaller than the size of a single peanut we'd be using). Despite what the doctor has said in the past, it is the goobers/the peanuts- THAT is what I witnessed nearly killing him. And that is what we are gearing up to do once again:
Feeding the equivalent of two goobers to my Coby-bear (which according to the above chart seems to be between capsule dose 3 and 4) and then a few weeks later feeding him that in actual peanuts?!!!! 

I don't know people.
That may be a bit too.... much.
I know, I know- I'm already dosing him with peanut every single day.
And that is very very real.
But it is also very 'fake'. I mean, I can make believe now. It's 'just' grape koolaid.
Right?
We can still pretend. (Though he now TASTES the peanut!)

Soon it will be peanut powder.
Maybe I can still pretend?
But the smell I'm sure will be strong. No more masking of that.
Can he have an airborne reaction from breathing in that peanut dust?
He has before...
Don't know that I can 'pretend' much longer.

And then actual peanuts?!!!!

Don't know how I will be able to just sit back and watch it happen.
Just sit back and NOT knock that poison out of the doctor's hand.
Last time Coby ate those he ended up moments away from death.
And now I am expected to willingly give it to him?
His poison?!!

In fact one of Coby's spelling words last week was 'poison' (and yes the OIT board put it on twitter).

Okay I am working myself into a bit of a panic attack so I need to remind myself that we are still in the grape koolaid stage.

"Just" grape koolaid, right? ;)

And my kiddo drank that grape koolaid today at the doctor's office.

And while it may look like grape koolaid, I am witnessing his strength (check out his shirt). I am witnessing a miracle. And I am in awe....

                          SOMEDAY BECOMES SOMEHOW

                          AND A PRAYER BECOMES A VOW
                                      MINUTE BY MINUTE
                              THAT'S HOW YOU WIN IT

WE WILL FIND A WAY

BUT LET US SEIZE THE DAY!!!!

                                                         

JUST A (BAD) DREAM....

It's been a while since I had a bad dream about this and for that I am grateful. But last night another one presented itself to me, a quite vivid one that is hard to shake. (And yes I said the bad dream prayer).

I think the combination of witnessing the child next to us go into anaphylaxis at our last up-dose, together with the upcoming switch to capsules must be weighing on my subconscious (or maybe not so 'sub'). Coby has just two more up-doses until they switch him to peanut flour filled capsules. While a reaction is possible at any appointment, for some reason, kids have a harder time when they switch 'forms' of peanut. In fact in just under two weeks (if all goes well) Coby's final liquid updose will be to 50mg, and the following week his first peanut flour dose will be.... 50mg! Yep, they don't up-dose the child, they same-dose the child because switching forms is hard on the body. Kids tend to react even at the same dose of a different form. Scary stuff.

It will be soooo weird when we switch to capsule form. (Peanut flour is compounded and put into capsules at an apothecary. At each dose I am supposed to open the capsule and drop the flour onto a spoonful of applesauce or pudding for Coby to eat.) Now when Coby has his purple liquid dose pulled up into that syringe it doesn't look anything like peanuts. ...but peanut flour looks like ground up peanut. Won't be able to fool ourselves anymore. (Hmmmm perhaps I can pretend it's light brown sugar...)

Peanut capsules

Peanut flour from within the capsules in pudding

 Anyway the dream... I dreamed we were at some family simcha in a fancy ultra religious hotel where people wore long dresses and sheitels. There were shuls inside this fancy schmancy hotel. I took Coby aside to give him his very first capsule dose, but Coby grabbed it from me, pulled the two halves apart quite vigorously and the powder went flying and multiplying itself and landed all over Coby's face- in his eyes, up his nose, on his lips and in his ears and he immediately started reacting. I grabbed him and started running through the halls screaming. For a second I was embarrassed that I was running through the place of the ultra-orthodox dressed in my sweatpants pajamas but oh well.... I injected him with an epi-pen as he screamed as I held him down. I picked him back up and continued running. I passed by an open door to a shul and saw my mother in law sitting in the front row. She was wearing a yellow jacket and black skirt. I tried to quietly wave to her to come help, but she thought I was just waving and she smiled and waved back. I was clutching Coby to my shoulder (he seemed to be the size he was when he had his big reaction at age two and a half) and saw the spots spreading and his breathing become more labored. I heard rattling from within him. I was wondering if I needed to inject him with his second epipen saying, "I cannot believe this is actually happening." In my dream I even updated my facebook status, "There is nothing like holding your child as he is struggling to breathe. Please. Hug your child a little tighter today." And I woke up.


The details of that dream stayed with me throughout shabbos. The details did not get hazy as dream details usually do.

Sigh.

But it was only a dream. (I hope!)

As exciting as it is as we inch further and further in this journey (122 days, but who's counting) it is also a terrifying one.

Once we get past the hump of switching forms, it will be so much 'easier' when we graduate from liquid to capsules because we will no longer have to worry about refrigeration, or running out of liquid dose, or the fear of us breaking that glass bottle, so that will be nice change after all these months.

IYH March 9th will be his first capsule dose (after two more liquid up-doses). After four weeks (if all is well) of capsule doses it will be actual peanuts which would be before Pesach! Stores are already stocking Pesach supplies (sorry for the reminder)- but while the rest of the world is dreading and counting down to Pesach, we will be counting down to peanut. Crazy! Thanks to all of you who have offered us your good wishes and support. It helps carry us through the journey!

HAPPY UP-DOSE (BACK-DOWN) DAY!

Don't let the title of this blog fool you- it is Coby's up-dose day!!! It is MY back that is down :(. Thankfully there was no snow today (though I was concerned about the roads up there being clear from the bit we got yesterday--- the roads thank goodness were fantastic- though it was snowing up in New York as we drove through- but nothing too bad. Worse than the snow were the several new pot holes that did not exist last time we up-dosed), but my back started acting up again a bit last night. I wore my back brace for several hours but this morning it was still not a happy back. I had to wear a medicated back patch, took some meds and wore my back brace a bit this morning and afternoon hoping I'd still be able to drive up to Suffern. Thank goodness it all worked out!

After all I really had no choice since we were basically completely out of Coby's dosage! Yitz had to help me the last several days holding that glass jar (CAREFULLY AS NOT TO SHATTER IT) at an angle as I tried to get the syringe and my fingers into the glass to pull up enough liquid (and it was quite a feat to do it without bringing up air-bubbles) to dose him. We were basically scraping the bottom of the barrel.

He had been on this current dose for an extra 4 days due to the snowstorm we had last Thursday, Today's dose he will be on for the next 10 days since we cannot updose him THIS Thursday, just three days away since that would be dangerous.

Coby was excited I had to pull him out of school over an hour early to get to his appointment. I was excited that I wouldn't be driving in the dark at all this round! When we got there Coby was excited to see Dr. Selter and even had another doctor come up to him (who he hadn't met before) who said, "I know you. I read your blog and tell all my patients to read it too." Cool!

So same ol'- vital checks, peak function, lungs, pulse, blood pressure, blood oxygen, temperature taking and he was good to updose!

25mg (1/11th of a peanut)

BUT.... the peanut concentrate was now ten times stronger than it had been yesterday! (Yesterday he was on 20mg at 8ml of koolaid, while today was 25mg at 1ml). He did NOT like the taste. After dosing he downed his cup of water really quickly as he was still scowling from the after-taste.

(After each dose the child is supposed to rinse with water to make sure no residue is on his lips, gums, throat or cheeks. He rinses it down. Kids who don't do this tend to get itchiness in their throat and on their mouth from a contact reaction.)

Thank goodness it all went well, BUT we witnessed the child next to him have an anaphyalctic reaction. In a way it was 'good' to witness it in that we saw how it happened and how fast the staff responded. In fact the child (looked to be about 12) and his mom were completely calm this entire time. (My heart was nearly pounding out of my chest.) This particular child actually successfully completed his peanut OIT and was doing day one today for a wheat allergy. First his eyes felt itchy, then they began to swell, then his throat felt itchy and then hives started popping out.

A couple of doctors and nurses came in and quickly decided to epi him. They didn't use an epipen but they used the real stuff hospitals use. No need to rush the child to the hospital because this place was completely equipped to handle it.

On the way home Coby and I discussed it. We discussed how important it is to tell someone when you feel 'off' and how when they needed to epi the boy nobody freaked out and how the epi helped reverse the symptoms. I did get a little bit alarmed when Coby kept exclaiming, "I am so tired mom," which is very unlike him. I know feeling 'sleepy' can be a sign of a reaction. In fact you cannot allow your child to sleep for the first hour after dosing--- but we were past the first hour. I just kept on driving, talking to Coby and stealing glances at him in the rear-view mirror.

We are now at the two hour mark and he feels a bit tired, but is doing okay. So pheeeeew- another successful updose! And he is now holding at 1/11th of a peanut. CRAZY!!!

SWIRLING WHIRLING SNOWSTORM

So Coby once again will not be up-dosing tomorrow.
It's not because we're in Disney (sigh, I miss it so much and it's only been a week or so!)
It's not because he's sick (thank goodness and it's only been a week or so!)

It's because we are supposed to get a huge snowstorm!

It's hard to believe that today is supposed to be 60 degrees and then BOOM up to 10 inches of snow! It makes me FINALLY understand the book, "Going on a Bear Hunt." I always had thought the author had made a mistake,

We're going on a bear hunt.

We're going to catch a big one.

What a beautiful day

I'm not scared.

Oh no!

A snowstorm

A swirling whirling snowstorm...

Huh? How is it a beautiful day and then boom a swirling whirling snowstorm?! Well now, Ms. Oxenbury NOW I get it!

Truthfully, I should be grateful that we had not yet had a real snowstorm by this time in Winter (let alone one that interfered with Coby updosing), but....

I was a stress-ball last night.
Why?
Because Coby only has enough solution here at home to get through this Sunday night. If we were to skip a Thursday appointment, he would need to have enough dose  to get to the following Thursday...

Argh- what to do, what to do?

Our first thought was to have Yitz swing by the doctor (a bit out of his way) today, on the way home from work, to pick up more solution.... but THE OFFICE CLOSES AT 12:30 TODAY!  (Though the only days they even do up-dose appointments are Mondays and Thursdays so who knows it they'd have the proper 'apothecarians' there today to put it together.)

And in the past, when we tried to get a Monday slot they had ZERO availabilities.

So I was stressing.
No way to get more solution.
No way to make it to NEXT Thursday.
Coby can NOT skip a single day, let alone several days to next Thursday.

So while other people may hear the word 'snowstorm' and panic a bit as if it's the apocalypse and storm the stores to empty out the shelves,

I was flipping out about the damn 'koolaid'. After all if there's no way to pick up more solution and there was no way for them to fit him in on Monday all of our progress and efforts over the last three months will be gone. POOF.

And that is what kept me up last night.

So yep, I was up tossing and turning.

This morning we called the office and pheeeeew, they said they'll be able to take Coby at 3:15 on Monday. While it means I will have to take Coby out of school a bit early and won't be around to do either of my carpools, it could have been so much worse:
-They could have said, 'well we can only see him at 10AM'- which would have meant Coby missing school and me missing work.
-They could have even said 'IMPOSSIBLE, WE HAVE ZERO SLOTS OPEN' (After all this is not some appointment that he's in and out in 15 minutes. His appointments take close to two hours and requires A LOT of supervision. He needs to have doctor's and nurses checking up on him constantly, and be available for that potential emergency at a moment's notice. It is a very very hands on/high maintenance appointment.

When I told Coby he would not be able to updose this week he was so sad about it. He soooo looks forward to those updose appointments. But then he realized:

1. SNOW! FINALLY! YAY!

2. I GET OUT OF SCHOOL EARLY ON MONDAY NOW!

3. I GET TO REMAIN ON MY CURRENT DOSE AN EXTRA 4 DAYs! (His current dose is diluted in 8ML of the solution and he loooooves the taste. (Each time I dose him he asks for more. I explain to him 'more' would mean a trip to the hospital.) Next week while they will be updosing the peanut from 20mg to 25 mg, they will be decreasing the liquid content/koolaid (ml) from 8ml all the way down to 1ml (making the concentrate 10 times what it is now). So while he always looks forward to up-dosing and getting futher to his goal, he is not looking forward to the drop in the liquid ml.

4. I GET TO SEE DR. SELTER!!!! (Dr. Selter is in his other office on Thursdays and so the PAs and nurses have been handling his up-dose appointments.) He only has seen Dr. Selter himself three times until now and always laments, "When do I get to see him again?" Dr. Selter is a rock-star of sorts in Coby's eyes and he had been asking to see him again... so poof-snowstorm and you're welcome Coby.

So Coby will remain on his current dose for an extra four days, and then the next up-dose he will remain on for 10 days (instead of 7) and hopefully we can go back to every 7 days after that.

Slow and steady wins the race...

For the last two or three up-doses now have been slowly inching up his doses inching up just 5MG at a time (from 10 to 15 to 20 to 25) and not making the drastic increases they had been until then. But after the next updose they will be doing a big increase again- going from 25 to 37.5 (which is a 50% increase).
 I was concerned about the big jump back up... after all there must be a reason they are starting to creep and crawl up the percentages. When I wanted to call in to ask the doctor, 'why?' Coby exclaimed, "You don't need to ask the doctor. You should trust him. They are the professionals. You are the 'I don't have a cluer!" 
Out of the mouth of babes...

...but nevertheless we called the doctor (behind Coby's back) with a few questions. One of the questions was if we are at the point in which we can 'expect' Coby to make it all the way through? (I mean, I was getting excited! Sure there have been a few bumps on the road, but on a whole- it's been really going okay!) Unfortunately they responded saying that there is no such thing as 'the point of okay' until the child graduates. (And even then it's an 'ish') Things can go downhill at any point. So, there is not a certain point in which we can relax a bit and tell ourselves "Yep, he will make it." Kids can respond badly at any point in this journey with absolutely no rhyme or reason. While kids do have a tendency to have a more difficult time when switching the 'form' of dosing (liquid to capsules, capsules to peanuts), there is no real way to foresee when the other points will be. (Though obviously if kids exert themselves during the 2 hour rest period or are getting sick,they also have a tendency to have a bad reaction and even anaphylaxis.)

Sigh. I honestly was seeing the light at the end of the tunnel. I was thinking that we must be past the hump. I wanted to buy 'graduation' things for him (and truth be told I did get some already), but I'm going to stop doing that since I don't want to cause an ayin hara. (there is such cute things out there and I hope they still are being sold if/when Coby graduates.)

So that's our update.
Crisis averted.
We have just enough solution to get us to his next up-dose appointment now on Monday.

Meanwhile go outside and enjoy this gorgeous weather.
"What a beautiful day.... oh no a swirling whirling snowstorm!"

All I can say is: IT. BETTER. NOT. SNOW. ON. MONDAY!

UPDOSE DAY!

This was our first updose since coming home from Disney so we needed to discuss a few things with the doctor. We told her about the slight roller-coaster ride when he developed that strange fever in Disney (she wasn't the doctor on call when we paged one) and we printed out all the pictures of his different skin reactions while we were over there.
She took a look and said she definitely saw the spots and the rashes and agreed that that 'single spot' on one day was definitely a hive. She asked if it happened soon after dosing and I told her it was hours after dosing. She said as long as it didn't happen within the two hours of dosing we can attribute it to regular allergy reactions and not to the dose, which is a GOOD thing, because if it were attributed to the dose we'd have to slow it down a bit.

We also discussed the possibility of him coming off the Zyrtec but decided against it.  Since he doesn't seem to be having any bad side effects from it she decided to keep him on it to continue his smooth (ish) journey. She said if he were to come off it now he'd have to go right back on it within 4 weeks anyway just before Spring season begins to arrive due to his environmental allergies. So we will keep him on it and hope for a smooth journey onward.

Before dosing him they did the usual- they weighed him, took his temperature, his peak flow, listened to his lungs, looked into his nose and throat and declared him "GOOD TO UPDOSE!"

So updose he did!

down the hatch

Our brave boy is getting up there in the numbers! We are less than a month away (if all goes well) of switching to the next peanut form- from liquid- to powder. They even asked him, "Are you starting to taste less of the koolaid and more of the peanut?" Whoa! Scary but exciting! 

They checked his vitals every twenty minutes. At one point Coby got a little bit itchy and started rubbing at his nose saying he was stuffy so the doctor came in to make sure he was okay. He was! She thinks he tends to get those symptoms each time he up-doses but as long as it doesn't go beyond that he's okay.

At another point during the hour a nurse popped her head in to ask, "Are you doing okay in here?" And Coby exclaims, "I'm doing awesome!" And proceeds to sing: 

After the hour was up the doctor checked him again (for those of you who are keeping count that is six checks within a one hour period!). She said, "You did it again! Passed another updose!" WOOT WOOT!

As his number climbs the increase percentages are getting smaller. (From 5mg to 10mg to 15mg to 20mg and next week will be 25mg) but he is inching closer and closer to that full peanut point. Today he had the equivalent of 1/14th of a single peanut. His starting point was smaller than 1/1,200,000---- how is that even possible?!             

 WAY TO GO COBY!!!!!

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!