PEANUT DAY

It is good I was kept busy for the first few hours of the day because now with less than 3 hours until the appointment I am literally shaking. Fighting off a migraine. And my hands are trembling. And I need to throw up. Yeah, sort of freaking out about now. Not much to say except AUGH. The rest of this post will be written after he eats peanut. I can't even....

And it's now 7 o' clock and we just got home!!!! He freakin' did it!!!!! I am in awe!!! For this week I joined him in wearing a themed shirt. 

 In the car Coby was asking what part of the peanut he was about to eat. I explained how they will crack open the shell and he will eat what is inside, the same way he eats a pistachio. He was disappointed saying, "but the shell looks sooooo good!" Yep, he was serious when he said that. Oooookay.... but how about we conquer what's INSIDE that shell...

He then said, "but what if I don't wanna eat peanut?"
"Do you want to stop OIT?"
"No!!!!! Why would I go this far without finishing?!"

THAT'S MY BOY!

Once we got there and they were doing his pre-check, I noticed he had a small bump on his right cheek and pointed it out to the nurse. There was a little machloket between a couple of them whether it was a hive or a pimple. They asked me my opinion and I said, "If he's good to dose- I don't care what it is, as long as you realize it was here BEFORE dosing so we don't need to panic afterwards."

I asked the doctor what would happen if we were to open that huge 5 lb. bag of peanuts right in front of Coby---- would he have an airborne reaction to all that dust that would be released? She said we are still not yet at the point where it's safe enough to test that, but we're getting there....

She reminded us that they will give him half a peanut in a little medicine cup and he is NOT to touch the peanut yet. He is supposed to chug the peanut down. She said to make sure he doses that way at home too.

They took our bag of peanuts to another room to pick out (half of) one for him to eat. As we were waiting Coby began one of his chants...

And then a nurse came back with the peanut.... Holy crap! Before even realizing what was happening Coby picked it up to examine and eat.

Both I and the nurse didn't realize at first that CRAP HE TOUCHED THE PEANUT ...

CUT!
I stopped filming and one nurse started to wipe him down. Another came running in and said, "we need to take him to the bathroom to scrub him down properly to make sure we properly remove all residue."

They took him out as I waited in the company of that peanut....

He came back for "take two".

Note how his left arm still has water droplets from when they washed him down.

He only touched it with his hand, but they REALLY wanted to make sure they got all of it.

When Coby later looked at this picture he said, "my first peanut ever!"
I said, "Well, not quite."
"When did I have a peanut before."
"Um... those two goobers that-----"
"Oh right, right."

Right after dosing he gave it his 'sideways thumb' (as in not a thumbs up, but not a thumbs down), but he decided a bit later that it was DISGUSTING! The doctor said we can try dosing by putting it together with a bite of (safe) chocolate.... But hello, meet my 8 year old who does not like chocolate... I'm hoping he will change his mind when he realizes all the yummy stuff that is out there that he has never been able to have before...

She said in a few weeks we can try up-dosing with specific types of flavored peanut butter (she will give us a list) instead of peanuts. What?! Already?! She said half a teaspoon of peanut butter is equivalent to two peanuts.

She also said that if we wanted he can also try reeses pieces (at the doctor's office first.) She said one peanut is equivalent to FIVE reeses pieces! She said there are kids who decide in maintenance instead of eating their 12 peanuts to eat SIXTY FIVE reeses pieces.... holy moly. That's 65 every single day!!!!
Peanut butter is a bit tricky. There are many kids who can tolerate peanut, but not peanut butter. Since it is so thick and sticky, it tends to coat the throat and tongue and cause problems. That's why we would need to do it at the doctor's before ever switching dosing form at home.

I asked her if I should be weighing the peanuts to make sure I get the right size half a peanut. She told me I can just pick any half and no need to drive myself crazy. HA! She obviously doesn't know me very well!

I then asked the doctor about Coby going outside during (environmental) allergy season. I explained that he goes outside for recess but I've been keeping him inside while he was home. She said that a couple of weeks ago the pollen was really bad, but now it has let up. She said we can try going outside, but cautiously. If he begins coughing or having itchy eyes we would need to call them before dosing him that day, since environmental allergies together with dosing can bring out a reaction. She said she is hopeful he will be okay since the pollen outside has gotten a bit better and he is on the zyrtec and flonaze. Maybe we'll give it a try this weekend...

I also asked her at what point will he be past the point of the equivalence of two goobers. I told her that I know goobers are smaller peanuts than the ones in actual shells, but what is the equivalence. She asked if we wanted to dose in goobers down the road telling me she can give me an entire chart of dosing equivalents once he finishes treatment.
I said, "His biggest reaction was to two goobers, I just want to know when he'll be up to that point here, just to prepare myself emotionally."
"That will probably be the point between one and two peanuts. Two peanuts would be more than that, but one peanut not quite there... once he gets to two he'd for sure be past that point."

When his hour was up a bunch of the staff congratulated Coby for this momentous day.

In the car ride home I kept telling him how proud I am of him.
He asked me, "when this is over- can I go to the store and buy and eat whatever I want?"
"As long as it's kosher- yep!"
"Our house is going to turn into a peanut factory!"
"Well maybe a candy store for a while---- but I will let you try ANYTHING you want. I will not say no!"
He then asked about ice-cream and milk shakes. He exclaimed, "I am going to go to CUPS and try every single flavor they have. Every. One. Even peanut butter!"

He then said, "remember when you told me there was a teenager who finished OIT but then he hid his doses and stopped dosing and he had to go all the way back to the beginning and then he couldn't eat ice cream or go to restaurants or eat whatever he wanted anymore."
"Yep, I remember that."
"He's such a idiot!"

I so hope as a teenager Coby doesn't rebel against this and try doing that as well... Oysh. Teenagers and their rebelling....
One headache at a time Stacey. Stop borrowing trouble.

In the meantime....
HOLY MOLY
HE FREAKING DID IT!!!!!

TOMORROW?! THE BLEEP IS ABOUT TO GET REAL....

Today's spelling sentence: Perhaps I will eat peanuts tomorrow."

Oh my G-d. Tomorrow?! He's going to crack open an actual peanut tomorrow?! How is this happening?!

I feel like I need to really prepare myself for tomorrow but I'm not sure how. I blog out some of the anxieties so in real time and in real life I can look cool calm and collected for my Coby.

When it comes down to it, I am usually good at putting up a solid front and planting on that mask but my sub conscious is not having any part of it.
One can slap on that mask and fool the world, but fooling yourself is another story.
So when I lay in bed trying to sleep, my mind goes into hyper-drive. And so my insomnia decided to strike a couple of days early. I figured I wouldn't be able to sleep Thursday night after he eats peanut in fear of a delayed reaction. I
 also expected that I probably wouldn't be able to sleep well tonight as I anticipate what will be tomorrow, but I didn't think I would have trouble sleeping already TWO days before the up-dose, but yep. Insomnia got a running start this week.

How is "peanut day" already here? Well 20 hours away.
And how are we going to actually do it?
I've seen videos of kids breaking down when it came to actual peanut day and have a real problem putting it in their mouth.
I've seen with my own eyes another child's 'peanut day' and both the mom and the kid completely broke down unsure they can actually do it.

I've seen what actual peanut did to my kid. An actual peanut tried to end my kid's life. And now I'm going to go ahead and let my kid eat that peanut? After all these years of being so careful and avoiding his poison, now what? I just give it to him?!!

WHAT THE BLEEP????

Coby though is soooo excited and THAT is what is most important.

Already yesterday morning he was saying, "I cannot believe I'm going to eat actual peanut!"

Later in the day he was playing agario and named his player INSPIRATION because he wants to inspire others. Well he sure inspires me, every single day. He has been a fighter since before he was born!

Last night when he was supposed to be sleeping, he was instead serenading himself. (His tightly closed eyes were not an attempt to try to make me believe he was singing in his sleep but rather his response to the light on the phone)

Tomorrow?! He is going to eat actual peanut tomorrow?!

But, but, how?

I know he has to.

I know that ironically it is only by eating his poison that he can be saved from his poison.

And I know it's the right thing to do.

But how?

Too many feelings...

We just have to.

Nearly every day I am reminded about why we are going through this scary journey. In the last 24 hours I was shown 3 reasons.
One was yet another crappy label.  The outside of this granola bar box makes no mention of peanuts, but inside on the individual bars it says, 'may contain traces of....'. WTH????? So a mom buys the box of seemingly safe granola bars. Kid grabs a granola bar from their safe home and....

Second reason is because the world on a whole just doesn't care. I read another article about the cruelty of people in this world and what they say to and about the child who is living with this disability. Literally saying they don't care if he dies, if they want peanut butter- they will eat peanut butter.

And the most important reason: another reported death due to food allergy. 18 year old in London. Didn't have epi with him. Never before had a big reaction. Thought grilled chicken was safe. It was not. http://www.standard.co.uk/news/london/teenager-died-near-london-eye-from-allergic-reaction-to-street-food-chicken-a3524006.html

Everyone's worst fear.  And so we really have to continue on this journey....

But it is so hard to wrap my mind around how can I SAVE him by POISONING him? That makes no sense on so many levels!

Tomorrow----- we enter the final stage of his treatment.

How?

This is making my head hurt and my heart pound.

This is unreal.

But we venture forward.

When Coby got home from school today we both were soooo excited to be dosing with our LAST capsule. I hate those things! Of course just to get me one last time, the damn capsule splintered and so I had to toss that splintered capsule and bowl of applesauce with peanut flour aside. So I opened another capsule and the flour was jam packed in there.

I had to spend several minutes poking at it with that toothpick to get the flour out of there. Yep, that final capsule really made me work hard. It wasn't going down without a fight. Coby decided to video a bit of it.

But we did it!!!!

Final capsule dosing!

(I actually- stupidly, decided to taste the peanut flour myself. I figured hey, there's the unused peanut flour I have to toss aside because of the splintered capsule- let me see what my kid has been going through. So I tasted it. And it was NASTY!
Why was it stupid for me to taste it? Because I haven't had peanut in over six years either. When people avoid a food for so long they can develop an allergy. Coby's doctor assured me I should be fine, but my plan was to wait to taste peanut until we were at the doctor's, just in case. That slipped my mind and so I ate most of that flour dose. And I could have sworn that my tongue felt 'strange stingy' afterwards. So of course I worked myself up thinking I was having a reaction and my heart started to pound. I tried to talk myself down telling myself, 'this is just anxiety, not a reaction- there is a difference.' But when we went down to the den I brought Coby's epipens with me so they would be there right next to me in case I'd have to stab myself. I was so relieved when the first hour was up, but I think I will wait til the doctor's office before continuing my own 'dosing'.)

And Coby's two hours went without a hitch.

I heard him chanting from across the room, "No more capsules. dun dun dun dun dun. No more capsules dun dun dun dun dun...." Too cute. I only got a split second of video of that.

FINALLY!!!!

I am so done with this stage and am ready to move forward!!!!

I think...

But wait...

What are we doing?

Seriously?

We are going to feed him actual peanut?!

Like for reals?

Like crack open that shell and give it to him?

But last time he had actual peanut....

What the hell are we doing?

What if we're wrong?

Is the world really going to open up to him?

Will he really be airborne protected?

Touch protected?

Bite protected?

But-----

Really?

ARGH!

Is this really going to work?

And if it does, How will we go from our white knuckling through life to a live and let live? How do we desensitize ourselves from our own anxieties and the way we lived life for over six years? I cannot even imagine.

How can we change all the NOs and STOPs and DONTs to SUREs and GOs and DOs.

How is this happening?!

And will he be okay?!

Will he be okay tomorrow? Will he be okay for the rest of the process? Will he be okay in life? I mean, he can still have reactions despite all we are doing...

...but he will be so much safer.

People sometimes wonder why we are going through OIT when he will still be considered allergic and can still have reactions. The easiest answer is to keep him as safe as possible while allowing him to live life fully.

Pre-OIT he was at risk of having reactions while having life closed off to him. Playdates, camps, birthday parties, bar mitzvahs, girlfriends, colleges, vacations, travel....---- all that already closed off and STILL can have reactions despite all our precautions.

Post OIT his chance of reacting is lower than pre-OIT and life will no longer be closed off to him. He also will no longer be touch and airborne sensitive. And one wrong bite won't have the power to kill him anymore.

Should be a no- brainer....

but it's so complicated...

One of the pros puts it like this:
"If reactions can occur any time during OIT, why is OIT worth it?"

No guarantees. OIT is in NO WAY a "golden ticket" to an Epi-free life. For some that's a deal-breaker because they want MAGIC to happen. And that's OK, anyone can unsubscribe and go about their life and try to avoid. We don't want or need to "convince" anyone, we do offer our help to help others understand the JOY that is post-OIT life. When you are living in a food allergy war zone it's hard to imagine what life on the other side looks like. 

Here's the key. You have to look at BOTH sides of the equation. And that's what a naysayer does--looks at ONE side and acts as though the "strict avoidance" side is EASY and EFFECTIVE. And strict avoidance, nationally is a dismal failure. You know that. High numbers of reactions and vigilance required. 

No one can estimate a percentage of risk whether your child will have ANA with or without OIT. That's the calculation those of us who proceed did in our heads. For me, even if it was equal to avoidance--5% or 15% with or without OIT, who knows?--the scale tipped toward OIT because it allows us to live normally and participate fully in life. To get rid of the fear of food, the social exclusion, the emotional stress and worry. Constant conflict and questioning with every bite of food.

Risk remains on both sides. Your child is still allergic. But life, life is what happens when food just becomes food again.

Your life post-OIT is NORMAL. You will never look at a label again. You will not ask a waiter anything about the food except how it tastes. You send your child to school and go about your day. On your way home you can stop anywhere and eat or get take out. You hop on a plane and hope for a window. You visit friends and relatives and enjoy their company. You fully celebrate with food anyone's birthday, wedding, anniversary... when food shows up you can be excited! Your child goes places with their friends and their families without a care. It's real life. There is no stress related to food. 

The Epi-pen becomes your Epi-friend and you know if, for some strange reason a reaction occurs it simply stops a reaction immediately and you text your doctor. It becomes the spare tire in your car, the fire extinguisher in the kitchen, the band aid in your purse. With it you are invincible and unafraid. Life is incredible when food is just food!

BUT....

TOMORROW?!


I cannot begin to wrap my mind around this.

G-d grant me the serenity to accept the things I cannot change---- and I had, for over six years....

The courage to change the things I can----- trying so hard to be brave as we attempt to change what                                                                        we once thought impossible

And the wisdom to know the difference---- this remains to be seen

In the meantime....

TOMORROW.....

One more dawn

One more day

One day more........

"BUT WHAT IF I WIN?"

You know how facebook has 'on this day' memories, that if you click on it you see what updates and pictures you posted on this exact day throughout the years?

Well today facebook reminded me that on April 23, 2009, when Coby was just 8 months old, two years before he was diagnosed, I had posted about a strange rash that covered his entire body. I was asking for insight since the doctor's office was already closed.
People asked if he had fever. NOPE.
They asked if he was cranky. NOPE.
They asked if he had he just gotten over a virus. NOPE.
By the following morning his rash had mysteriously disappeared.

Hindsight is 20-20. As I sit here today eight years later, I am nearly 100% confident that that rash was one of his more mild reactions to his allergen. I must have eaten it and he absorbed it through nursing.
How clueless I was with what lay ahead...

And here we are on April 23, 2017 and it was time to tackle that dreaded 'sealed box'. So after having it sitting in our dining room for nearly a month now, we finally opened it. Or should I say, COBY finally opened it. He wanted zero assistance- and did it completely by himself.
It was a bit strange, really. Ever since that box arrived it felt like it was holding a ticking bomb. We were scared to open it. And so we didn't. After last week's up-dose to the 500mg, we both agreed that if he were to have three successful dosing days at that level we would open it today. Thankfully he did!
Should we open it?
With zero hesitation at all, he ran up to it and eagerly pulled the box apart went at it as if it held a much anticipated birthday present or something.
A complete 180 degree change!

Coby then posed with the giant bag of peanuts alternating between being shocked, loving it and crushing it.

Are there actually peanuts in our house????

"I'm gonna eat you all!" (This pose actually had me ready to rip the bag away
from his face because really this bag is lethal many times over)

I will crush you!

Can we be friends?

I cannot believe in less than four days time Coby is going to be eating an actual peanut, well half of one. 

For the last six plus years we have lived in fear of these and now he is going to eat an actual peanut? This is crazy. 

This is surreal. 

This is terrifying. 

This is exciting.

It's taken us over six months of treatment to finally get to this point.
While we still have quite a few months left before graduation, peanut day is huge.

I remember back to Coby's very first OIT appointment on October 20th. In the waiting room sat a mom with her son. By their chair was a bag of peanuts. Nurse Nicole came dancing into the waiting room singing, "It's Peanut day Today! Peanut day today!!!!" She explained to us that peanut day is something to be celebrated! I remember feeling excited in that moment and I smiled wondering and hoping that  Coby too will get to this peanut day celebration himself.

And here we are 3 and a half days away.

Too many emotions. 

Coby and Yitz have been playing the  game World of War-Craft since yesterday. They spent hours on it yesterday but didn't finish. They played for hours today. It's past his bedtime. I thought this game would be long over but apparently they are in the endless final battle.

Yitz said to Coby, "You want to just call it a tie and end it now?"

Coby, "No!"

Yitz, "But since this is your first time playing you will be so sad if you lose."

Coby without missing a beat, "But dad, what if I win?"

That got me. THAT is the attitude I want my child to hold on to for the rest of forever. 

What if I win?

After putting so much time into something, you don't give up, especially not so close to the finish line.

For those of you who really know Yitz, you know that he is a really good game player and a very good strategist. And he does NOT just give in and let somebody win. If you beat him, it's real! And you should be proud because it's no easy feat!

I pulled Yitz aside and asked, "Is Coby going to lose? Were you trying to help him save face?" And Yitz admitted to me that Coby is actually in a better position to win than Yitz is!

So yes, it is past his bedtime and he is still up. Not because I am keeping him awake to watch him and wait for a reaction but because I am allowing him to stay awake to see this battle through. He can still get about nine and a half hours of sleep but he needs to see this through.

"What if I win dad, what if I win?"

I am holding off publishing this blog as they claim there is just 5 minutes left to the game.  I am waiting to hear that cheer from upstairs and praying it's the right person's.... I need his original above sentiment to get ingrained into him. 

10:23PM.... and I have heard the victorious yawp and will run upstairs to catch some of it...

What if I win dad, what if I win?

UPDOSE DAY.... FINALLY!

After three of the most 'not-boring' OIT weeks we've had as of yet, FINALLY we reached the next up-dose day. I approached it with both excitement and trepidation.

 After all, our last up-dose wreaked havoc in Coby's little body, and today's dose? Today's dose is TWICE what his last dose was.

Before Coby got home from school I nearly worked myself into a panic attack. For a moment I even thought I felt a migraine coming on and I thought, 'just what I need now, a migraine to prevent this week's up-dose'. Thankfully I talked myself down and was able to slap on the happy/calm/excited mommy face by the time Coby got home from school.

"Today is your LAST capsule up-dose!"
"This is so exciting!!!!" he exclaimed.

Coby was excited and ready. For the last few weeks (ever since I printed out the sign for the 500mg up-dose) when he saw "Mr. Peanut" on the sign,  he had been exclaiming, "I'm going to eat you Mr. Peanut!" He continued randomly doing it at today's appointment, literally talking to the piece of paper over and over so I told him I'd go ahead and video it.

As soon as we got to the office a bunch of the nurses came to greet Coby saying that it's been a while and they had missed him. They also checked out this week's OIT shirt. :)

REFUSE TO LOSE!!!!

Before up-dosing the PA came in to talk to us (face to face, as opposed to the dozen of times we spoke on the phone) about what had happened the last few weeks. She asked to see the pictures of all the spots that had covered Coby's body a few hours after our last up-dose.
When I showed her she audibly gasped. "That is definitely hundreds of small hives all over him. I hadn't even realized this is what happened to him!"  (When we had sent the pictures and paged the doctor in the moment, we hadn't spoken to Jessi, we spoke to the other doctor and nurses.) Jessi then said she no way would have been comfortable with going ahead with that week's up-dose had she realized this had happened. So all that hemming and hawing with me deciding whether to cancel that original up-dose appointment two weeks ago was for naught.... doctor wouldn't have wanted it- after all. I feel vindicated!

I cautiously then asked my question, "So had I noticed in the car ride home that while he was having that problem with his throat and his body was covered in these, I would have epi-penned him?"
And she said, "Since two body systems were involved, then technically that is anaphylaxis."

Inhale.

Exhale.

I mean, I KNEW it, but still hearing it straight from the doctor made it a bit more real.

So does that mean Coby now had two anaphylactic episodes?
I don't know...
 I am hesitating to call the most recent one 'anaphylaxis' because it is possible the skin reacted a while after his throat fixed itself. Right? I mean, I didn't pull over the car to check him- who knows if his body looked like that during the ride home.

Maybe I'll call it one and a half times?

I don't know.

She went on to tell me that if what had happened to Coby happened in the office they would have started him on some medications like benadryl (sigh- I do NOT like benadryl) and steroids and then 'wait and watch' because in the office since they have everything there, they are more comfortable in waiting.
But when not in the office, you react.
Two body systems- epipen.
One severe body system- epipen. But she reminded me that we can always page them but it is better to epipen just in case, than not to have epippened- and have needed it.

Today I had read an incredibly strong article about a child who went into anaphylactic shock.
 Like completely.
 Like stopped breathing.
Turned blue.
Mother thought him dead.
CPR.
The works.
Very intense and powerful article. They had listened to the (very misnformed) 'pros' and delayed the epipen... Quite difficult to read but really really drives the point home.  http://www.fortheloveofrepeatingmyself.com/mourning-a-child-that-didnt-die/?utm_campaign=shareaholic&utm_medium=facebook&utm_source=socialnetwork

I couldn't help but think about this article when Jessi said that it's always better to use the epi-pen just in case.

After checking his dosing journal and making sure he had several days of dosing at the full dose of 250mg with no side effects, she said that she and the doctor are confident in doing the jump from 250 to 500 at this point. But if I wanted her to, she can sort of mix the 500 with the 250 and find an 'in-between' dose of sorts.
I decided to just go ahead with the 500. After all both she and the doctor were okay with it and I doubted my abilities in re-creating this 'in between' dose once I got home.

She also told me that she wants Coby staying on probiotics for the rest of his treatment. (I do not yet know if that includes maintenance which means it'll be for the rest of forever, but will figure that out when the time comes.)

Coby begged her, "please don't make me eat capsule anymore. I hate it. Instead just give me a quarter of an actual peanut---- that's less than what I'm eating now anyway."
"Sorry, we can't do that just yet. Next week though we can move to actual peanut!"

So it was go time...

I opened that capsule and the flour was really bunched together in there. I literally turned the capsule halves upside down and only specks came out. Good thing I knew to bring toothpicks with me and I started poking at it with the toothpick. And lo and behold, take a wild guess what happened next.

YEP... 

But, at least it didn't splinter into bunches of pieces and fall into the applesauce. I was able to hold on to the pieces that broke and managed to get out most of the peanut flour without dropping the 'shell fragments' into the apple-sauce.

Yeah, thanks James... I cannot wait for our relationship to be over.

And then it was time to dose. I wish I took a video. He was so cute. He had said he was so excited to be on his final capsule up-dose but in reality he seemed petrified. His eyes bugged out when he saw the amount. 

And he really hated the smell. "EW, GROSS!!!"

He very hesitantly brought the spoon to his lips, though it was quite a few seconds before he actually opened his mouth to eat it. 

"I don't know about this."

Finally he opened his mouth and put the spoon in.

And then he took the spoon back out without his lips or tongue touching anything that was on the spoon.

Spoon in.

Spoon out.

Spoon in.

Spoon out.

This happened four or five times.

I had kept pushing the camera button so I wouldn't miss the moment of consumption. I so wish it was a video...

"Come on Coby, you got this!"

And he did it!

MORE THAN AN ENTIRE PEANUT!!!!

And the waiting began.

Just a few minutes in he began scratching at his shoulder. And then his back. And then his chest.

I checked him out but didn't see anything.

When the doctor popped her head in I told her what happened so she checked him out as well and also didn't see anything.

"You can stay 15 minutes longer than you usually do if that will make you more comfortable."

I didn't know if it would though.... it was more the being stuck in the car that was freaking me out, since his last reaction seemed to be delayed by a few hours, so what would 15 extra minutes in the office do other than delay my dreaded car-ride?

Most of the time went by fine. A bit of scratching. A bit of eye rubbing. But okay enough...

After his entire 60 (75?) minutes went by and they did his full check up- heart, lungs, pulse, skin, blood oxygen etc, they said he was good to go.

That is the point I usually update facebook with a "HE PASSED!"

But this time I didn't. I was too scared to write that. I was afraid that would tempt fate. I was terrified about what was going to happen on the ride home and when we got home. I was afraid of jinxing it.

She said, "See you next week---- for peanut day!!! That is a HUGE deal here!"

We wished her a great week and left.

I didn't optimistically leave as I usually did because I still was not confident he passed. I didn't trust that we'd be back next Thursday because a huge part of me thought there is no way his body will accept the jump from 250 to 500.

And we began the drive home.

And I kept stealing glances at him in the rear-view mirror.

"Stop looking at me all the time!"
"But you're cute."

He was getting mad at me for all my glances so instead I just tried talking to him (so I can listen for a change in his voice/phlegminess, clearing it), but he still got mad at me. "Stop talking! I am tired! I don't want to talk!"

Of course my sensor went off because while being exhausted after an up-dose is normal to a degree- last time the tired-ness is what started his spiral.

So instead I talked to myself informing Coby I needed to talk out loud 'to keep myself company'. I made up ridiculous monologues on the spot (thanks improv skills!) which of course had Coby in hysterics and he just couldn't help but put his two sense in. And so I kept him engaged and talking. And what he thought was, "Oh my gosh,  you're so cray cray" was actually my ploy to keep him awake (because falling asleep within two hours after dosing is bad) ,gave him a second wind, and enabled me to listen for a change in his voice.

As we pulled into the driveway I said, "So Coby, this may have been your last Thursday of capsule! Do you think we'll be coming back next week for actual peanut?!"
"Yeah!!!"
"Don't you think that one of these days we'll need to open the box that has the peanuts. It's been sealed up for about a month now!"
"How about next week when we go you just carry in the sealed box of peanuts to them. It will make them all laugh!"
"Um. No."

In the end we agreed that if Coby has three days of dosing at the 500mg level with no problems at all, together we'll open that box on Sunday.

We went into the house and Coby had to rush to the bathroom.

And my alarm went off.

Every few moments I called out to him.

At one point when he didn't answer a couple of calls my heart just about stopped.

But all was good.

Inhale.

Exhale.

And three hours out continues to be good!

A bit of me is still quite traumatized from what happened last time.
A bit of me is still unsure what to believe.
A bit of me is unsure if my kid is really going to consume actual peanut at our very next appointment

But we have the ability to tuck those doubts aside and continue to move forward.
Fake it til we make it.
After all, with all this, it's not really what we feel, but what we do.
And so. We do...

AND YET ANOTHER NON-UPDOSE DAY

Another Thursday.

Another missed up-dose day.

Sigh.

Going into Pesach Coby had to completely skip his doses for TWO FULL DAYS due to his being sick.  (That is quite ironic actually, as I was wondering how the heck I would 'carb up' Coby on Erev Pesach without bread or matzah being allowed. Turned out we didn't have to carb him up at all.)

I was quite scared as to what will happen to him when we finally were able to re-introduce peanut to his body. True we were going to start at a dose he was at two weeks ago--- but that dose was still equivalent to about 1/4th of a peanut. Back on day one, he had begun reacting to 1/6,000 of a peanut- what will happen when 1/4th of a peanut was to re-enter his body after nearly a three day hiatus?

We were heading out to Brooklyn for yom-tov and I chose to pack a spare set of epi-pens because I truly was afraid that we'd have to use a set when re-introducing his allergen.

Our doctor had told us that even if Coby still had some fever by day three, we'd HAVE TO introduce some amount of peanut into his body because it was way too risky to skip three days in a row and then try reintroducing it. Thankfully by day three he was fever free, at least that was no longer an issue!

And since he was completely off dosing we had no schedule to adhere to. (Usually he doses shortly after getting home from school at 4:10PM- and we are supposed to stick as closely to 24 hours as possible without going more than 22-26 hours in between.) I had read that dosing in the morning is actually easier on the body since the body's cortisol levels are at its lowest and the risk of reaction is lower too. So I figured when reintroducing it, we'd dose in the morning to maximize his chances of success and over the course of the next few days, slowly move his dosing time back to his regular time of 4:10.

So at around 10:30 Tuesday morning we carbed up and dosed Coby at the 100mg level.

And waited.

And NOTHING!!!!!

His body COMPLETELY accepted 100mg- 1/4 of a peanut despite it being nearly three days since it had been in his body.

I was amazed!

This is truly a miracle in my eye.

The next day at 11:30AM we went up a level and gave him 175mg.

And waited.

And NOTHING!!!!!

Amazing!!!

And today 'would have/should have' been his updose to 500mg. Actualy today 'would have/should have' been peanut day had the last two weeks run smoothly, but 'alas' (there I go again, with that word), it was not meant to be. The last two weeks were NOT boring, unfortunately.

This is Coby's dosing diary. What we want to see are 'zeroes' with a line through them which would mean no reaction or side effects. As you can see the first six days of 250, he had something going on--- then he had FOUR DAYS of no reaction at all--- but then he got sick. :(

Sigh.

Most kids are able to get through the entire OIT in 4-6 months. Next Thursday we hit that 6 month mark and we are nowhere near done.
That finish line seems to keep getting further and further. In fact when we cancelled today's appointment, we had to have them add several appointments through the month of July.

Sigh.

There are 12 up-dose appointments left. If we are able to up-dose every single week (with the exception of Shavuot) it takes us through most of July.

So we are not going to be done before the summer as we had hoped.

At times it really feels like we are walking against the wind.

But as someone recently pointed out, we may be having a bit of a bumpy ride right now, but Coby is still light years away from where he started.

We may be down, but we are not out.

And so we keep going.

And we look at the small ways our lives have already changed.

In fact, we even let (tree) nut cake into the house. There are also cashews in the house! Coby did not test positive to those and so this year we allowed them into our home. (On Pesach, they most likely did not come into contact with peanut.) Technically, Coby can actually eat them, though it is a still a bit too hard to make it readily available to him, so we put it slightly aside. If he sees it and asks for it (he won't), I would allow him to have it (and then watch). Everyone in the OIT group keeps pointing out that even after desensitization it takes A LOT to change our mind-frame after all these years of living in fear. It's still going to be hard and take a while to completely trust. But even being able to have things in the house that we didn't before- is huge. We were even able to have 'lady fingers' (may contain tree nuts) in the house this Pesach. Crazy!!!!

Meanwhile here we are on Chol Hamoed Pesach. And we're not doing anything. Instead, I am stalking facebook living vicariously through everyone else's Chol hamoed outings (keep those pictures coming!) Coby and I are got stuck at home. Josh is back at college. Yitz is at work tax seasoning. Mikey is at Great Adventure with NCSY. I had hoped to bring Coby to a movie matinee- but the timing did not work out for the time he'd need to dose today.

Oh well.

It is gorgeous outside and almost a crime to stay inside, BUT I am very nervous of (environmental) allergy season. People in my OIT group say this is the season that 'overfills the allergy bucket'. Dosing together with dealing withe environmental allergies are often too much for kids. Even though many of the kids are on an allergy medicine, or two, (as Coby is), they are having some reactions to dosing.

I am not even opening the windows to our home in fear of letting all that pollen in.

We need to maximize our chances of pulling forward.

(Don't ask me yet how I'm going to deal with allergy season in years to come, trying to get through this first one!)

So we stayed home in hopes of keeping his system calm and to get him back to his original 250mg level (that had given him problems for nearly a week when we first introduced it.).

Coby is just not enjoying Pesach apple-sauce so I made him kosher lipesach Chocolate pudding to dose with. We are prepare the dose on a kitchen chair instead of a counter or a table since it is kitniot. Coby has the heter to eat it, but the rest of us are obviously not eating it and I didn't want to risk it getting into any of our foods.

About to reintroduce the 250mg dose!

Coby began chanting out outloud, "Okay Coby, Okay Coby- it's all up to you!" and made muscles before downing the spoonful.

He ate it. And absolutely HATED the pudding. Oysh. Is Pesach over yet?

He then drank his cup of water and he still needed to eat applesauce to keep his tummy calm.

But Pesach apple-sauce- oyyyyy.

He was grimacing. He was groaning.

We had just started watching one of Coby's favorite shows: 'little big shots', and twin boys were about to wrestle.
Since Coby was taking his sweet time eating that applesauce and I needed to get it into him and fast. I said,  "I will feed you if you eat it nicely." He agreed.
I paused the show and Steve Harvey was frozen in the background.
 I became the MC. "Steve Harvey.... you think two four year olds wrestling is something? They aint got nothing on this 8 year old who is wrestling his allergen and about to down it in less than two minutes!"

Coby started laughing, opened his mouth and downed that cup of applesauce.

"AND THE CROWD GOES WILD!!!!"

And together we watched the rest of the show, with me watching Coby out of the corner of my eye.

He did mostly okay. He seemed to get a bit tired and lay down on the couch. For a moment it looked like he was going to fall asleep (which is not a good thing). But he did not.

45 minutes into the hour he started rubbing at his eye.

A lot.

But that stopped after a few minutes. And nothing else happened.

Pheeeeew!

So we are back baby!!!!!

IYH tomorrow even less than eye rubbing will happen.

And shabbos should have us back at his regular dosing time.

And maybe, just maybe---  next Thursday we can finally make it out to our updose appointment?


                                           WE MAY BE DOWN BUT WE ARE NOT OUT!

ARGHGGHGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!

I am so frustrated. It could have been worse. It could have been worse. It could have been worse. That is my mantra. It could have been worse.

We nearly didn't take Coby to the doctor today because his fever was under 101, but since it was beginning to climb and it being erev Yom tov, we went ahead and took him.

Nothing better to do on erev yom tov than spend time at the pediatrician's.

Coby got fed up after waiting close to a half hour and grumbled, "Mom, can't you just operate on me?"

It's a good thing we went to the doctor since the strep culture came back positive. When we told our allergist that it's strep, she actually grumbled.

"No, no- it's a good thing," I told her. "The doctor said by tomorrow afternoon he should be good to go!"

I thought a virus can linger on forever but 'simple strep' means in about 36 hours we can be back on schedule, but apparently I was a bit mistaken. Both fever and bacteria in the body can make dosing more difficult.

She told us to try to avoid motrin within a 6 hour period of dosing (since motrin and dosing can cause a reaction) and instead use tylenol. To give him the 100mg tonight (our dose from 2 weeks ago). If his fever is under 101 tomorrow night we should go up to 175 and if gone by Wednesday to give him the 250s again. She told us that if his fever is higher than 101 despite it being yom tov we need to call her to figure out the dosing.

"And if he gets through this week okay and is back on 250 by Wednesday, can we updose Thurday? Please? We can updose Thursday? This is already week two on 250 and he had a run of good days on 250. Let us updose?!"

"NOPE. That would not be a good idea at all."

ARGH!!! 

So now it will be THREE weeks on the 250 capsule! (with 3 days of down-dosing- hopefully not more). I know it could have been worse. We could have not gone to the doctor today and his fever could have spiked in Brooklyn and we could have lost several weeks of progress instead of just another one. We could have run out of peanut flour again, but we should be able to just get by (if those damn capsules don't shatter.)

Truth be told, I do feel a bit of relief that we have a plan to get us through yom-tov, but am soooo frustrated at the direction the last two weeks have gone.

But the harder the climb the better the view. 

We are not giving up!

Edited a couple of hours later: Fever went to 101.4. We were told we can't dose if over 101. the tylenol did not help his temp, in fact it climbed to 101.5. He can't use ibuprofen now. Paged the dr. for the fourth time today (poor woman) and she wants Coby to SKIP his dose. Again. For the second day in a row. Too risky to dose at all. :(. If he's okay tomorrow eve and G-d willing with 3 doses of antibiotics he will be at under 101, he can start at 100, have 175 on Wednesday and back to 250 Thursday. Just praying reintroducing the peanut, even at a lower level, which is still a nice chunk- after NOTHING for 72 hours prior does not bring out a reaction. Sigh. While it is nice not having to worry about a reaction yesterday or today, it will be that more stressful tomorrow. Hope all goes well and we get back on track relatively smoothly. Please G-d...

And since you gotta laugh--- the ironic thing is I was worrying about how to 'carb-up' Coby before dosing today, on Erev Pesach, without the use of matzah or bread. Guess that wasn't an issue after all...

TIMING IS EVERYTHING

So you know those times you feel like everything has fallen on your shoulders and flattened you, and you were just beginning to dig yourself out. Then boom- another avalanche hits.

Yep. 

We were just beginning to relax about this dose. Coby had four good days in of dosing at 250mg with NO reaction and we were beginning to look forward to this week's up-dose to 500mg.

And BAM!

I thought we had everything under control. Yes, Yitz is in tax-season so pretty much is absent, but I had it all under control. Shopping done. Kashered oven Saturday night. Finished kashering kitchen this morning. Had planned on baking 4 things today and the rest tomorrow before heading off to Brooklyn.

But BAM!

Yitz is working from home today but pointed out to me how cute Coby was lying down on the couch almost falling asleep.

WHAT? That is NOT Coby.

Coby asking for a blanket because it's a bit cold.

No, it is not.

Coby sounding just a little bit congested.

Me saying from across the room, "I bet Coby is getting sick, usually when his voice sounds like that he is sick."

Coby and Yitz insisting Coby is fine.

But the magic 6th sense of mom knows. She always knows.

And despite the seemingly symptom-less Coby I take his temperature.

And BAM!

101.6

Seriously?

Now?!

In the capsule stage?

With no way to half-dose?

And very limited amounts of capsules left in the house?

And the day before Pesach?

With no kosher lipesach meds in the house?

And about to go to Brooklyn?

Now?!

Coby still insisting he feels fine.

Coby singing at the top of his lungs as he plays.

But 101.6.

Not a high fever.

But.

A bam nonetheless.

One cannot full-dose with fever because fever together with allergen can bring out anaphylaxis.

One can also not dose within a certain time-frame of taking Motrin because Motrin plus allergen can bring out hives and a reaction.

Are you flippin' kidding me?

Now?!

The day before Pesach begins?!

We FINALLY got a good streak going of dosing at 250mg and were going to updose to 500mg this Thursday.

Now?!

So with just one hour before having to dose we paged our doctor.

He called us back and we asked him what to do. I expected him to tell us to check if the motrin Coby had taken an hour and a half earlier had brought down his temperature to under 100 and allowing us to full-dose just as he had in Florida.

"Do not dose Coby at all today."

What?!

Not at all?!

Not even a partial dose?!

BAM

4 days into OIT Coby had strep so they down-dosed him to half the dose, and at that point Coby had temperature of over 104!

In Florida , 2.5 months into OIT Coby had fever, so they down-dosed to half the dose.

But now- NOTHING?! 

The doctor said until Coby is seen by the pediatrician and has a possible 'diagnosis', he doesn't want to risk dosing him with fever. He said we should call him back after Coby is seen by his doctor and we willl decide how to proceed. He said skipping just one day is completely fine. (Is it?) And if he is fever free he can even go back to his full dose of 250mg- tomorrow.

But what is the likelihood of having fever for such a short amount of time?

And if he has fever again tomorrow then what?

He is not yet on peanuts so we can't simply do half the dose of a nut.

He is no longer on liquid which was so easy to half dose.

He is on 250mg of crushed flour. He does have a bunch of the last dose of 175 left--- but that's not a half dose. He has a handful of the 100s left- but that is less than half a dose.

Isn't something better than nothing?

Maybe Coby is at such a high level now and coming out of the big reaction he had it's just too dangerous to dose at all without knowing what's going on in his body?

BAM

And so I spiral.... How will we do this? Will the doctor continue to have him completely NOT dose as long as he has fever? And then what? Will we have to slowly climb back up? Will that be safe to do at home?Will his next up-dose appointment at the doctor's be where Coby was at weeks ago????How much progress are we going to lose?What about updosing this week to 500?! Come. On!!!! Is that now circling down the drain?

COME. ON!

Seriously?!

BAM. BAM. BAM.

And so for the first time in 5 and a half months Coby ate NO peanuts.

Zero. Zilch.

And I have no idea what the repercussions will be.

And we continue running up the down escalator that at times seems to be going at super-sonic speed.

And. I'm. Running. Out. Of. Stamina.

And until tomorrow's doctor appointment (that has yet to be scheduled since they were closed by the time we realized he had fever) we are left in limbo.

BAM!

And since of course everything has to happen in the suckiest of times, despite it being tax season, Yitz ran out to buy both children's tylenol and children's motrin that can be used on Pesach. Motrin to be given for higher temperatures but not too close to our dosing time, and tylenol to piggy back if necessary to get his fevers down in order to be able to dose him with something. 

Praying not to lose the progress we have made...

But fevers and dosing can lead to anaphylaxis. We are going to Brooklyn for the first two days and while we hope to avoid hospital visits, when necessary we much prefer the hospitals in Bergen County to the ones over there. 

Obviously we hope to avoid the hospital. But we also hope to dose. We need to dose. Why must the stressors keep piling up one on top of each other?

Every once in a while as we continue to run up that loooooong down escalator, someone pushes a switch that shifts that escalator into a slippery slide and down we fall.

BAM!

So since Coby did not dose today. He said, "it feels soooo weird that I'm not dosing!"

Actually for the very first time just a couple of days ago Coby was whining about all his dosings during OIT. "This is so annoying, everytime I dose I lose a half hour!" See, Coby didn't mind the two hour rest period, what bothered him was that even if he is in the middle of a computer game, at a certain point we have to stop him to eat his carbs, wait ten more minutes, then dose, then drink, then applesauce. In reality all that takes about 15 minutes but in his mind it was 30. And for the very first time since beginning in October Coby complained about it being annoying. Oysh.

Anyway since we did not dose Cobes today, I ended up gaining about two hours in which I didn't have to observe him after dosing, so I figured I'd better get everything done TODAY because who knows what tomorrow will bring with Coby's doctor appointment, paging the allergist, figuring out dosing, hoping for no reaction after having completely skipped today and getting over to Brooklyn during rush hour traffic on erev Pesach.

And so I packed today instead of tomorrow.

And other than the kremslach which I need to make tomorrow, (because on Erev Pesach, Kremslach is like the law!), everything else I baked today:

1. Sponge cake

2. Heavenly crumb coffee cake

3. meringue cookies

4. custard biscuits

5. brownies

6. brownies with chocolate chips (for Josh to take back to the dorm)

7. chocolate vinegar cake

8. pop overs

9. hard boiled eggs

10. apple kugel number one

11. apple kugel number two.

which leaves tomorrow almost completely open to figure out what the hell is going on with dosing while keeping Coby safe and keeping him from losing too much progress.

Sigh.

Why now?

Why, why, why?

Capsule stage was only supposed to be 4 weeks. That's it. Why couldn't it be not complicated for just 4 weeks? 4 weeks of dealing with James. 4 weeks of trying to get those capsules open without shattering. 4 weeks of Coby downing 'FLOUR'. Eating flour is HARD to do. You try it. Liquid is doable. Solids are doable. But powder. YUCK!!! 4 weeks of hoping we have enough capsules to get us to the next step since it is so difficult to get the peanut flour and then get it to the apothecary (who is only there once a week and then takes several days to get it done.)

4 weeks. That is it.

So why?

TWICE within the 250 'week'?!

Why?

Couldn't it have been simple just for the capsule stage?! It is so hard to handle all these bumps during the capsule stage.

But alas (and here I am using THAT word twice within a week), why should it be simple?

We have a reputation of 'stuff' happening at the more inconvenient times which include, but are not limited to:

-Josh getting 104 fever the day before we are supposed to leave to Disney on the auto train.

-Mikey getting stitches on a Friday afternoon, one of those short ones in the winter, and we barely getting out of the hospital in time to make it home for shabbos. 

-Josh breaking his finger the day before leaving to camp requiring hospital visit b/c no doctors had any last minute availability and he needed to leave to sleep-away camp the next morning.

-Mikey getting 105 while in Canada when we were there for Yitz' grandmother's funeral. Having to find a babysitter (despite me and my trust issues of leaving my kids with babysitters especially someone I don't even know) who will stay behind with a sick kid, get to the funeral on a Friday, find a doctor who will see us despite us not having insurance (they saw us for 75.00 cash). Doing a slow culture which takes 3 days. Yitz and I carrying 6 year old Mikey around the block from where we were sleeping to where we were eating for shabbos because he had no energy to walk. And us needing to start driving back home early Sunday but being held back for hours as we waited for a callback from the Canadian doctor to see if he had strep and to get him started on the medicine before the 8 hour drive.

-Josh slamming his head into the ceiling the day before leaving to camp requiring an emergency room visit to determine if he had a concussion.

-Coby getting sick while vacationing at Disney requiring a trip to centra-care at age 3. (yep him getting sick this year at Disney was not a 1st for him.)

-Coby getting sick with pneumonia while vacationing in Canada. Since we didn't have Canadian insurance we needed to drive back over the border to a hospital in NY. 

-Josh getting sick with swine flu, the day I accidentally set my oven on fire which filled the house with so much smoke that we needed the fire department to come fan out the house as we all waited for a few hours in the backyard for the smoke to clear out. On erev Shavuot. We did not yet know at the time that it was swine flu, but a few days later when Yitz ended up in the emergency room, the hospital diagnosed Josh with swine flu... and a few days later baby Coby was also diagnosed with swine flu as well. Husband in hospital. Two kids with swine flu. Erev Shavuot. Kitchen fire. No biggie.

So we really should be used to this by now. I mean, we even laugh about all the above times too. 

BUT.

This feels different.

This isn't just a single episode at an inopportune time.

This is a continuous uphill battle. Every Single Day.

This is not a simple something a dose of antibiotics can cure.

This is so much more than that.

So much is riding on this. 

Coby had been eating some fraction of peanut every single day for the last 160 days.

And then today? Nothing.

Zippo. Zilch. Nada.

BAM

And I am losing my mind about this. 

Because I need a road-map with clear-cut directions printed out. Yes, I know what our destination is but I am so sick of getting 'road closed' signs and 'detours' and 'construction ahead' and 'dead end's. There is just so much that this type A personality/touch of OCD (self diagnosed) gal can take. And why not throw erev Pesach into the mix while you're at it? "Keep those curve balls coming," she says sarcastically.

Well, we all know that there is an upside to nearly everything and even I can see one as well--  since I had been crazy busy non stop all day I didn't have time to eat breakfast. Or lunch. So at least I'll be heading into this heavy caloric holiday a few ounces lighter than I otherwise would have been--- so yeah, there's that.

Hoping for a miraculous 12 hour fever cured by the morning so we can full dose tomorrow. Stranger things have happened, right....