SOOOOO FRUSTRATED

I was taking graduation date for granted. It was gonna be smooth sailing and today everything had to turn unknown again. And may get scary. Again.

DAMMIT

Once a week Coby has to dose with peanut butter. 10 peanuts equals 2 and a half teaspoons of this particular brand.

He HATES peanut butter.

Every week it is a fight that lasts at least a half hour and is the worst part of all of our's week.

Usually we do it on shabbos.

We decided to do it today, since tomorrow is Coby's birthday and we didn't want to put him through it on his birthday.

And I decided to take pix before he began dosing since I document everything and I can't do this on Shabbos.

 


After carbing up Coby spent 40 minutes fighting us, holding his nose, saying 'wait, wait... give me another 2 minutes.... another minute... another 10 seconds, another minute..' 

"Your stomach won't be cushioned by carbs anymore Coby, COME ON."

40 minutes in he takes his first bite. (Once taking first bite he has to finish it within 5 minutes)

And he gulped a whole bunch of water.

"Don't drink so much water with each bite, you will fill up your belly and have a problem. Save it."

BUT HE REFUSED TO TAKE MORE BITES WITHOUT MORE WATER.

So what happens?

When he was about 40% done his eyes get big and he begins gagging, tries to close his mouth and LIQUID PEANUT BUTTER CAME SPEWING OUT HIS NOSE.

IT WAS A FRIGGIN NOSE BLEED IN PEANUT BUTTER!

He then opened his mouth and it came pouring out of his mouth too.

We knew it was NOT a reaction. It was the too much water bringing all the peanut butter back up.

BLEEPIN CRAP CRAP.

last time this happened he ended up YES having a reaction because instead of the peanuts going just one way down the throat, they went down and back up.

Today they went down the throat, back up the throat AND BACK UP THE NOSE.

We paged our doctor. What do we do? He didn't even finish the original dose. How much of what he threw up do we replace? What's the chance of having a reaction now.

She called back in under a minute and said to scrape off the remaining peanut butter, put it back in teaspoons to determine the equivalence of peanuts and give him the remaining of today's dose in peanuts.

She said not to try to replace the peanut butter he consumed and and spewed back up because there is no telling how much stayed in his stomach and we can't over-dose him.

She said not to worry if we end up inadvertently down-dosing him because even if he skipped one day completely this early in the week (day 1 of home dosing at this dose), he still is set to graduate IF the rest of the week goes well.

BUT HE HAS TO REDO THIS PEANUT BUTTER DOSE BEFOREHAND!!! (We won't make him do it on his birthday, but we get to repeat this fun on Sunday.)

5 minutes later the phone rings again with the doctor calling, "ARE YOU POSITIVE THAT HIS THROWING UP WAS NOT A REACTION TO THE DOSE, BUT HIM PSYCHING HIMSELF OUT ABOUT IT AND DRINKING TOO MUCH WATER?"

YES, WE ARE POSITIVE.

Meanwhile Coby sounds crazy congested because of throwing up through his mouth and nose and we have to be on heightened alert for a possible reaction because of that. The doctor tried to calm us down saying, 'at this point he should have enough protection from that happening because of it coming back up,' but you never know.

DAMMIT.

We get to do this fun again on Sunday in order to bring him to graduation. If he is successful we still get to graduate this Thursday.

If not...

????

And then we have to do it one more time next weekend to make sure he is ready for that food challenge and free eating.

Now we are an hour post this crazy dose and he still sounds crazy congested. If it was all realted to his peanut butter nose bleed, shouldn't that have ended? Shouldn't he sound clear now? Is this now reaction related? Do we have to treat it?

Paging the doctor again...

And he is now taking benadryl and hopefully that'll clear him up.

Meanwhile she is talking about down-dosing him and pushing him off graduation.

We begged her telling her this is NOT real. This is him psyching himself out and then drinking too much water. She said tomorrow we should dose him with 8 peanuts. If he is fine, then 20 minutes later to do the last two peanuts. If that goes well hopefully we can continue on. If she speaks to Dr. Selter and he says push it off we lose another week.

COME ON.

THIS WAS ALL PSYCHOLOGICAL FIGHT FOLLOWED BY STRESS AND TOO MUCH WATER. THAT IS WHAT IS CAUSING THIS.

We are all so stressed and frustrated right now.

I need to calm down, breathe, regroup and try to pep my kid up again.

Do not take this away from us...

****and i bleepin' screwed up. i accidentally gave him 1 and a half tsp of zyrtec (he had been on 1 tsp zyrtec for months, but off it totally for 2 weeks now) instead of benadryl so had to page doctor AGAIN. (She said zyrtec will work similarly to benadryl and not to give him benadryl too.)

THIS IS DOING ME IN.

Saturday night update--- he remained congested the entire night and slept in my bed. He remained congested the entire today as well. When he woke up he had what looked like a heat rash on his chest too which we don't understand.

The doctor had him dose with 8 peanuts today, followed by the last 2 20 minutes later. He did fine. We hope to do the 10 peanuts all together tomorrow.
The doctor told us do NOT dose again with peanut butter this week.
Hoping if the week goes well she will allow us to updose to the 12 this Thursday and graduate despite not having a full peanut butter dose.
Unsure....
We shall see.
If not, graduation will hopefully just be next Thursday instead of this.
Fingers crossed we can still be on schedule.

DOUBLE DIGITS!!! NEXT STOP---- GRADUATION!

I am in awe.
How else can I put it?
I am shocked.
I am amazed.
How did we get this far?

I literally have been hemming and hawing about OIT for years. The first I heard about it was when Coby was 4 years old. The closest place would have been 7 hours round trip, they wouldn't take insurance and would cost several thousand dollars and Coby was too young at the time to even consider it.

Every couple of years we would revisit the idea of OIT telling ourselves that if it were guaranteed to work, despite the distance and the cost we would do it.
But there are no guarantees, are there?
So we placed it on the back-burner.

And then when Coby was 8 years old we heard about this place up in Suffern, which was just 1 hour round trip and took insurance! Too many things were just falling into place to not seriously consider it.
We were being thrown a life-line and we needed to grab on.

But.
What if?
I mean, it can't work.
Can it?
He's too allergic.
Isn't he?
But what if this can save his life and give him his childhood back.
We can't risk not checking it out.
We made that initial appointment.
Closed our eyes.
Held hands.
Took a deep breath.
And jumped into that deep end of that freezing pool.

Actually it wasn't a pool.
It was an ocean.
And none of us are very good swimmers.

And very early on those waves overtook us.
And tossed us.
And pulled us under.
And tried to spit us out.
Again and again and again.

We can't do this.
This is never going to work.
But we kept on treading that water.
Wondering if we fake it... could we make it?

It was quite the stormy ride at times. The waters would calm for a bit, but it was just a matter of time til that storm started up again and tossed us around.

But we kept at it.
And never did stop treading that water.

And here we are, the day of Coby's up-dose to double digits and just one week until graduation (if all goes well).

"Be Fearless"--- he wore this shirt to his very first dosing appointment back

in October. And now he wears it again for his last appointment

 before graduation, bringing him full circle. 

As soon as we got there one of Coby's nurses came running to him all excited, "I cannot believe you are at 10 peanuts. I still remember your consultation. This is unbelievable! I'm so excited for you!"

Jessi came in to fill out his school forms. I didn't even know what to check off on those forms. Until now our doctor told us to check off, 'if child eats allergen, epipen immediately, do not wait for symptoms.'
Jessi did not check that off.
She wouldn't even check off 'give epipen for any symptoms IF allergen was likely eaten.'
"HOW DO YOU NOT CHECK OFF EITHER?"
"He is nearly desensitized Stacey. It's a whole new world for him." (Though of course he will still carry an epipen and will need it administered in case of anaphylaxis)

  She also told us we can stop the flonaze. Just like that.
And he up-dosed to TEN peanuts.

That is a whole lot of peanuts.

The hour passed uneventfully and after his post-check we were told, "We will see you next week for your final up-dose and graduation, just don't get sick before then! Graduations are so exciting. We are so happy for you!"

I feel like I am in a dream. This doesn't feel real. I look back at all these months and wonder how we even got here. I was with him every step of the way and still don't know how we got all the way here. Nearly at the end.

I was there. But I just don't get it. It just doesn't seem possible.

Coby and I already made a deal that after next week's final up-dose, graduation, an uneventful night, and his final peanut butter dose that weekend, we have a date at Hagen Dazs for his very first milk-shake that Sunday. I cannot wait. I get teary-eyed just thinking about it.

I just can't believe this.

I seriously cannot find the words.

But as they say, a picture is worth a thousand words. And then some...

THE DAY OF TEISHA

How cool is it that Coby up-dosed to 9 peanuts on his 9th (hebrew) birthday.

Teisha Botnim bayom Huledet shehoo ben teisha!

On the way up we passed by a DUNKIN' DONUTS (which is our marker as to where to turn off the highway) and Coby asked, "when I graduate can we go to Dunkin' Donuts?"
"ABSOLUTELY!"

When we got there, I reminded Jessi about the small hive on Sunday post dosing, and showed her a picture of the other small hive that occurred after yesterday's dose. She was still able to feel and see that hive on his cheek at the pre-check, but since it was so small and everything else checked out fine, she said she was still comfortable going up to nine today.

And he took it very seriously! Showing those peanuts who's boss!

We were told that Coby could now actually touch those peanuts and feed it to himself!

BUT

She also said if he were to touch it, while he shouldn't have a contact reaction, if he were to rub his eyes that could still cause a reaction, and so we'd have to still wash him down.

So we passed on him touching them.

We piled up those 9 peanuts into the dosing cup and Coby said, "I don't think my mouth is big enough!"

Yep it is a whole lot of peanuts to consume! We're getting up there!

He asked to divide them up into a cup of 6 and then a cup of 3 so that we did.

The hour passed mostly uneventfully. At the end when he needed to do his peak flow his throat got a bit phlegmy and he couldn't get a full breath out. The nurse had him drink some more water but the peak flow remained at a number a bit smaller than before dosing, but still okay enough.

When Jessi checked him out I asked my questions of the week:

1. When can I stop shelling these peanuts and switch to planters?

Not until the 24 peanut challenge (She said the roasted peanuts in a shell that Coby is dosing with are MORE allergenic than planter's peanuts so we'd have to work out the math to get the proper dose, but meanwhile they want him to really get his body used to the most allergenic form.)

2. How do we dose during summer vacation? In the winter in Disney we dosed in the mornings but it was still chilly when we went out to the Disney parks. In the summer we can dose in the mornings again, but it will be HOT outside and one day we'll be in an amusement park all day. Can heat still be a factor 2 hours post dose?

Heat can cause a delayed reaction. If there is a single day you will be outside in the heat the entire time, you should skip dosing that day. (I'm going to have to figure out his dosing schedule that week and see what entails being outside in heat all day. Some days we'll be driving in the car for several hours so that should be fine. What about if we are outside but by a breezy beach? What about if we are outside but ziplining through trees? I think I'm going to have her give us an exact schedule as to how to do it.)

3. So after graduation I can really take him into an ice-cream store and let him order something as long as it's not specifically peanut butter flavored?

Yep.

I really don't have to worry about cross contamination from a topping or the ice-cream scoop?

Nope. 

But I can't go to restaurants until the 24 peanut challenge, right?

You CAN go to restaurants as soon as he graduates. I wouldn't order a Chinese dish cooked in peanut oil until after the 24 peanut challenge, but you can definitely go to restaurants once he graduates at 12 peanuts!

Holy crap. Are we seriously just two weeks away from all of that?

Meanwhile we are also trying to figure out winter vacation and are seriously considering flying with a different airline than we have been until now because it is so much cheaper.

Am I really okay with that? I don't know.

Perhaps.

But I still think I'm going to indicate 'peanut allergy' on his boarding pass, after all he will still be allergic--- but I cannot believe we really may be venturing away from our trusted and loved Jet-blue.

It's going to be really strange navigating a whole new life.

I cannot believe how close we are. 

It doesn't feel real.

If all goes well, next week is double digits.... and the following week----GRADUATION DAY. I cannot wrap my mind around that. Is this really happening?

INTERESTING DOSING DAYS THIS PAST WEEK

It's been an interesting week. Basically good and boring, but still somewhat interesting.

On Sunday we visited Mikey at camp.

We spent several hours with Mikey, including taking him on that necessary Walmart outing. We also got ice-cream there, because why not? (hee hee, it's so cool to say that!)

Since we had known we wouldn't be getting home within the 26 hour dosing window, we brought Coby's dose with us. I figured I could dose him in the air conditioned car and his two hour rest period would be easy, since he was stuck in his booster seat.

I was wrong. (ish).

He tossed by the 8 peanuts and followed that with half a water bottle and a pouch of apple-sauce. A half hour later we stopped off in Monticello to get (safe) pizza. For a brief 2 seconds Coby forgot he had just dosed, jumped up from his seat and ran to Yitz who was at the counter. I shouted "DONT RUN COBY!", but it was too late. He already did. But it was literally just 2 seconds.

A few moments later a small hive appeared on his cheek.

Crap! I didn't even think to bring his steroids with him, just the benadryl and his epipen. (lesson learned)

Could a 2 second run really have done that?

We walked back to the car and I decided to stay in the backseat for the duration (2 hours) of the ride home so I can stare at Coby. Soon he started wiping at his nose too and my heart started pounding a bit faster. Thankfully nothing progressed beyond that and so we did nothing to treat it.

The following day we emailed the above picture to his doctor to get her take on it.

"Yeah that's a hive, but I'm not at all concerned. He was outside for several hours that day. He's no longer on one of his allergy medications. He did do a brief run. For all that, that hive is inconsequential."

Pheeeeew

Two nights later Coby was leaving on his camp overnight.

They go to CLUB GETAWAY which is an amazing place. They have sports, and wall climbing and rope courses and ziplining, and trampolines on the lake and swimming and speed-boating, lots of food and a campfire. Of course we were not going to attempt to have some teenager dose him and then force Coby to stay inside and sit still for a few hours and miss all the fun. Our doctor told us it would be okay to skip his dose that one night (as a once in a blue moon thing to do) and jump right back up to 8 the following evening.

"Are you sure? Jump right back up to 8? Shouldn't we build back up to 8?"
"It's just the one day. He'll be fine."

Um. Okaaaaaay.....

When I picked Coby up the following afternoon he told me that he had had a blast.  (And thanks to OIT I was barely worried about him having a reaction to something there that may have been cross contaminated... Last year I was a hot mess despite the supposed 'safety' of the food.)

When we got home he unpacked and showered. He carbed up and got ready to dose. I was quite nervous to do so (but didn't let him know that)-- after all by then he hadn't had any peanuts in 48 hours. Was he really going to go from zero all the way back to eight with no problem? The doctor may have thought so, but there was no way I did.

Thankfully he did pretty okay. He developed one small hive a couple of inches beneath his eye but nothing beyond that! Since the doctor wasn't concerned about the prior one, I was going to try and not be concerned about this one.

After three hours with nothing progressing beyond that tiny hive, I allowed myself to exhale (mostly). And you know what- to go from zero back to eight with just a tiny hive is nothing short of a miracle.

And today is my boy's hebrew birthday. While he is still eight on the english calendar, he is 'teisha' on the hebrew calendar.

At first I was upset when his doctor told me that since he would be missing a dose this week she was not comfortable in up-dosing him from the 8 to 10 peanuts as originally planned and would only be going up to 9. However after seeing that he did end up having a tiny symptom just last night I agree that jumping up to 10 today very well could be too much to handle.

And besides how cool is it that he's hitting hitting teisha peanuts on the same exact day as he is turning tesiha. It must be bashert. 

Yom huledet Sameach my love. Happy Tesha!

EARNING HIS ASSOCIATE'S DEGREE WHEN UP-DOSING TO EIGHT PEANUTS

...and graduation has indeed been pushed off another week. SIGH

When we checked in, the front desk they told me that we only have appointments scheduled through July 27th. They asked if we need any more appointments scheduled. I wasn't sure at that point....

You see next Tuesday Coby has his camp overnight. He will not be dosing at that overnight. He will completely skip dosing and was told to go back to his regular dose on Wednesday.
Today Jessi told us that while usually kids go from 8 to 10 peanuts at their up-dose appointment one week later, she isn't comfortable having Coby do that since he is missing one of his doses next week; and just two days prior to that big 2 peanut jump. She said instead we will just go up to 9.

(I am actually going to ask if we should even bother going in to up-dose to 9 if most kids go 8 to 10. Maybe Coby should just stay on his dose of 8 for 2 weeks instead of 1 and then go straight up to 10 in 2 weeks. We shall see.)

So yep, need to schedule another appointment. 

And another week gets added on.

Sigh.

So now if everything else goes well graduation will be August 3rd instead of July 27th.

Graduation in early August would mean his final food challenge may now be the first week of school instead of the last week of summer vacation. That complicates things too.

Sigh

It also means Coby will not be able to have his ice-cream cake for his birthday. He'll be missing that cut off by just five days.

Sigh.

But you know what... maybe it's better this way. Instead he can have his very first piece of ice-cream cake at his graduation party at home surrounded by his cheer-leaders and loved ones. Look at me trying to see that cup as half full. Yay me! ;)

Anyway, YES my 8 year old (for another 16 days anyway) did indeed up-dose to 8 peanuts today!!!

THIS IS 8....

And his shirt reads, "Chill I got this" Perfect!

But before we could even go to his appointment today we had to drive through a torrential downpour--- but we did it!

And before we could even drive through that torrential downpour Coby had to get through his day at camp.

And I say 'get through' because today was the camp day Coby had been dreading the most. It was speed-boat and tubing day. (I know--- that should be one of the best trips, right?) Last year he was too scared to try the tubes on this trip day, so for part of our family's summer vacation in 2016 we decided to take Coby tubing to show him how fun it actually is and he loooooved it!

TUBING SUMMER 2016

But a year is a long time and once again Coby was fearful of today's trip. He even asked to stay home from camp and it was hard for him to fall asleep. I tried reminding how much he loved tubing last summer and I told him he's been on a speed-boat several times and loved it each time and worse comes to worse he can stay on the boat and doesn't have to tube. We also talked about how fears can grow bigger and bigger until you face that fear and show it who is boss. I even told him in life we tend to regret the things we don't do, not the things we do do, which is kind of heavy stuff, but oh so very true. Think about it....

This morning I showed him all the pictures from last summer of him speed boating, tubing and white water rafting. I pointed out that he had a huge smile on his face in every single picture. When I dropped him off at camp he said, "75% chance I will go tubing."

When I picked him up from camp, he approached the car, looked me in the eye and a huge smile appeared on his face. I knew in that moment that he indeed did face his fears and went tubing with camp. (TWICE!!!)

Tubing with camp today!

And he said, "So far this was the best trip of the summer. Can I go tubing again?" 

BOO-YA! THAT'S MY BOY!

Yay, I am so proud of him for facing these fears. I knew he could do it. After all he has been facing his fear every single day for the last 267 days and continues to do so.

He truly is a fighter and is the strongest person I know. I knew that from the moment I heard his strong heart-beat in utero. This boy sticks with things. he doesn't give up.

At the up-dose appointment a couple of new nurses tended to him and I thought, 'oh crap'. You see, I had inquired a few weeks ago about the names of all his OIT nurses to make sure I got enough graduation gifts for each person (it's a specially made item that is no longer being sold.) I got six of them. Now I'm panicking-- do I have to find two more items even if these nurses may only have dealt with him a handful of times over thirty five appointments? Crap. And will it matter that theirs is different from the others? I don't know what to do...

So yep, a new nurse introduced herself and brought Coby his peanuts. Can't believe we went from a microscopic speck all those months ago, to this!

The hour went well. And Coby checked out fine afterwards.

 Before leaving, I discussed how to dose Coby at night when I need to.

Coby's very last camp trip is a late night and he will only be getting home at about 8PM. Since his dosing has to be within a 22-26 hour window we will have to tweak the dosing times of the days leading up to that late night to be able to dose him at 8. She said it's best if he stays awake for two hours after dosing, but as long as he is awake for one hour that should be fine. It makes me so nervous to dose him at night-time, since the later you dose, the higher the chance of a reaction (something to do with the body's natural state of cortisol levels being highest in the morning and drops off as the day goes on.)

I know I'll be using a baby monitor that night....

 But I need to focus on the here and now and try to retrain my mind to try to stop worrying about all that is yet to come--- after all this late night is over a month away, and even after graduation day!

So sticking to the present--- , assuming the night goes well, Coby successfully up-dosed to EIGHT PEANUTS! In many practices that is graduation date. It's not Coby's graduation date- but I kind of look at it as him getting his 'associate's degree' before he will continue on to get his full degree, hopefully three weeks from today. 

Yeah it sucks that another week was added on. Again.

But even with another week added on--- we are still nearly there!

At what point can I start counting the days instead of the weeks? 

If all goes well--- graduation is just three weeks away---- 21 days!

Is it too soon to be counting the days? 

Keep fighting the good fight Cobes. You are knocking those fears unconscious!!!!

WE ARE TAKING THEIR POWER AWAY!

It thankfully has been a boring week of dosing which means today Coby gets to up-dose to 8 peanuts today!

The other day I actually filled out a thank you card for his doctor (along with gifts to give the doctor and Coby's five nurses) on graduation day.

We are sooooo close to that day. This is unbelievable! (I know, I know... Graduation does not guarantee 100% safety. In fact just this week I read about a child who went into anaphylaxis during maintenance dosing, but that child and mom still are so happy they did OIT because it has been soooo life-changing and unbelievable.)

If all goes well he has just one or two more up-doses before graduation day! We are so close!!!!

The other day I read about a dairy allergic 13 year old who was bullied to death in the UK. Yes, you read that correctly. BULLIED TO DEATH. The bully was arrested for murder. This 13 year old bully. Apparently this particular kid had been bullying him for a while- at times throwing a piece of cheese at him, or shoving one down his shirt. This time however, his classmates say that this 13 year old ass-wipe snuck a piece of cheese into the kid's lunch. Kid is now dead. There is no coming back from that. Dead is dead. I can't even---

A main reason we are doing OIT is because of stories like that. I can't trust people to keep Coby safe.

Mistakes can happen.

Bullies can happen.
Kids can be horrible. Over 1/3 of food allergic kids have been bullied because of their allergy. And it can turn deadly. Unfortunately the above is not the first time I heard a story like that with an ending like that.
While now all of Coby's friends are so sweet and supportive, when they hit the tween and teen years things can change. Many can morph into monsters. Who the heck knows? And even if 9 out of 10 kids are sweetie-pies.... all it takes is one. While most kids can stay loyal and amazing, all it takes is one...

The victim above was a popular child with many friends.... except for one.

All it takes is one.

We are taking that 'one's power away.

Sure sure, the ice cream and the donuts and the parties and college and the sleep-overs and restaurants and travel are all amazing bonuses Coby will get for completing this--- but the number one reason we are doing this is for his safety.

No more touch reactions.

No more air-borne reactions.

If he takes one wrong bite (or even several)- it will be okay.

A bully will no longer have the power to hurt him in this way.

So while a random reaction may happen during maintenance dosing, Coby will be thousands of times safer than he had been.

And today, day 267 of treatment Coby up-doses to 8 peanuts.

EIGHT?!

This number is particularly impressive to me because many doctors who do OIT actually consider graduation to be at this level. They are done. They don't go any further. They stay on 8 for several months and then have their food challenge of 24 a few months later followed by a life-time of dosing at 8 peanuts per day.

So part of me feels like today Coby is receiving his associate's degree today! Obviously Coby will continue on all the way up to 12 peanuts since that is his doctor's protocol, but I feel like today is an unbelievable milestone as well.

Cue in that graduation music because we are sooooo close!!!!!

LUCKY NUMBER 7

Oh my gosh, this is crazy!

Today Coby up-dosed to 7 peanuts! The nurse told us, "crack open those peanuts- and pick the seven biggest ones!"

Whoa!

"This just happened"- 7 peanuts!!!!

Here we go---- lucky number 7...

Gonna crush you!

And the hour was soooooo boring and it felt like it took forever!

playing on his phone to help the time go by

But boring is good! 

When the hour was up the doctor told us Coby is to start tapering off the zyrtec. Gulp! He's been on zyrtec since the start. 

She said we should still keep him on the flonaze but to half dose the zyrtec for the next two days and then to stop. "Let's see how he does." (And what my ears hear is, "Prepare yourself for something to happen....")

Coby had a blister in his mouth that was hurting (since this morning) so I threw the peanuts in one by one to get to the back of his teeth. I told the doctor I had heard reactions can occur if there are blisters or cuts because of the allergen getting into the blood stream too quickly.

She replied, "At this point that should no longer be a factor. He is at 7 peanuts. He is sooooo close to that finish line! Just two or three more up-doses until that final up-dose/graduation day!"

She explained that after (IYH) successfully up-dosing to 12 peanuts on that graduation day he will then be able to eat all items 'made on equipment with peanuts' and 'may contain peanuts' as well.

BUT

He will not be able to "free eat" until he (hopefully) passes the 24 peanut challenge one month later.

Praying for an uneventful night and that the tapering of zyrtec doesn't affect him negatively...

But in the meantime....

I cannot believe we are sooooo close. That finish line really is in sight! And what a sight for sore eyes it is.

YOU GOT THIS COBY!!!!

Count 'em--- there are 7 peanuts characters too!

HAPPY JULY!!! A trip down memory lane celebrating Coby's birthdays

Is it really July? We have now entered month 10 of OIT--- but it's possible Coby will be able to graduate this month, and if not this month; then next! That finish line really may be in sight!

CRAZY!

It is ironic that we really are so close but at times still so far...

We decided to make Coby's birthday party a few weeks before his actual birthday. He wanted to have a sleep-over party and Shabbos ends too late to have it then, so we had to do it on July 3rd since there is no camp or work on the 4th.

Since his party theme is "How to train your dragon"--- of course I had to make a dragon cake. And of course that cake had lots of odds and ends necessary in order to complete it--- fruit roll ups for the wings, fruit by the foot for the fire, fruit gems for the claws. marshmallows and chocolate chips for the eyeballs, hershey kisses for the nostrils...

I needed one last item and that was chocolate covered graham crackers for the spikes.

But we couldn't find any that was both kosher and safe enough for Coby.

So I thought okay, I'll juse chocolate square mints---- but it said "may contain peanuts".

That was sooooo aggravating because he is just a few short weeks away from being able to eat those items, but still- we could not use it. Instead I just dyed some fondant, rolled it out and cut triangles for the spikes.

Coby literally gasped out loud when he saw the cake. The kids were amazed too. One boy exclaimed within his first ten minutes of being here, "this is the best party ever!!!!" (he was not at Coby's Harry Potter party last year.)

So that finish line is in sight; but we still have to navigate our way through our 'new normal' and make adjustments when necessary.

For example, Coby's party began at 6:45. We definitely wanted his two hour rest period post dose to be done before the first guest arrived.
Usually he comes home from camp at 4:25, showers and carbs up. Our doctor had told us that we need to wait 45 minutes after showering Coby before he could dose. Obviously we did not have time for that today. He got home and we had him carb up right away. As he was eating, we were sponge bathing him with a baby wipe to get all the chlorine, bug spray and sun tan lotion off.

His two hours ended just four minutes before the first kid arrived.

Pheeeew.

He'll have a real shower tomorrow.

And speaking about sun tan lotion--- while we all know about sun safety, and lotioning up every two hours or so and yada yada yada... it takes on a whole new level of conscientiousness for Coby. We learned that if your child gets a sunburn---- that elevates the temperature of the skin---- and there have been reports of more reactions to those kids who have sunburns.

Crap.

So far this summer we've been doing okay. His cheeks are a bit pink when he gets home from camp, but nothing major. We do keep reminding him to reapply the lotion at least once during the camp day as well.

As I type I hear the occasional giggle emanating up the stairs. It gives me such joy to know Coby has such happiness surrounding his birthday. Due to the severity of his allergy, Coby has not been able to attend most birthday parties through the years (I believe he went to a total of one this year), so I try to make his birthdays extra special.

3 YEARS OLD/UPSHERIN-- no real theme. Just had about 50 people over. Milchig meal. Aleph bet choo choo train. tallis cake I made. I made aleph bet cookies, boy cookies wearing tzitizit, kippah cookies and scissor cookies. Until this year we simply had been purchasing Costco cakes. Costco was no longer safe so I had to bake everything.

4 YEARS OLD--- JAKE AND THE NEVERLAND PIRATE THEMED kids first had splashy fun outside in pools and waterslides, made pirate cupcakes, each got a pirate hat, posed for pix by the pirate boat, made treasure chests and went on a treasure hunt and then had a cannonball balloon fight

water slide

decorating treasure chests

treasure hunt

5 YEARS OLD- I threw out my back and couldn't pull a party together on my own. So we went to BOUNCE-U and on his actual birthday we went to Busch Gardens.

6 YEARS OLD-- construction party at the Home Depot kids each got construction hat and Home Depot apron. They each built a tool box and painted it. Food/cake and games.

 

 

7 YEARS OLD--- Ninja turtle themed- they made Ninja Turtle cupcakes, and ninja turtle pinata bags, they each got a mask, pinata. Musical sewers. Pass the pizza box around. Food & Ninja turtle cake

making turtle cupcakes

8 YEARS OLD--- In my opinion, this year can never be beat. Not ever ever. Harry Potter. I spent months planning this. I made platform 93/4. I made Coby a robe. I turned our dining room into Hogwarts. I made wanted posters. I even decorated the bathroom. I made wands for each kid & we had a sorting hat ceremony. Each kid got the proper tie, a tattoo, and glasses. We played quidditch. We did magic spells and potions. Each child created their own owl. They drank butter-beer.  They brought home souvenirs from honeydukes and gryffindor.

After the hat sorted them, they each got the proper tie

Platform 9 3/4 

drinking butterbeer during potions class

Quidditch

  Coby's 9th birthday celebration is going on now.  Not much prep needed for a sleep-over. Just some decorations and making a dragon cake. Game table, food, mad libs, movies, popcorn....

mad lib hysteria

                       popcorn and movie time

in their sleeping bags- progress!

Obviously we'll celebrate his birthday again on the actual date.

And America's birthday is tomorrow. Last night we went to see fire-works and thanks to OIT for the very first time ever Coby was able to buy something from an ice cream truck!!!

It's kind of ironic. Coby was not able to get his top choice since, 'may contain peanuts'. His second choice actually said, "made in a nut-free facility". Who would've thunk? It was still the very first time we ever approached an ice-cream truck. 

I was very excited when Coby decided to taste and then eat the rest of Yitz' ice-pop which DID say, 'made in a facility with peanuts.' BOOYA!!!

So Coby had his ice-cream (up until the cone--- since he decided the cone was gross). Then he had Yitz' ices. At this point we are about three hours post dose and we play catch with Coby as we listen to the band and wait for sunset and the fire-works.

 After a good half hour or so Coby sits down, looks very sad and tells me how his mouth hurts so much and he can't even smile. I have him open his mouth and tell him to say 'ah'. My heart nearly stopped when I saw what looked to be two blistery puffs on the roof of his mouth.

Was he reacting to the ice-pops?

Even though it was 3 hours post dose, was the heat plus the exercise causing a reaction?

I took a picture and told Yitz we have to page the doctor.

He asked me, 'do we even have Coby's medicine with us?'

'Obviously we have the epi and the benadryl, but we don't have the steroids with us, what do we do?'

I took a minute to brain-storm and did some detective work.

"Coby--- the ice-pops you ate had a very big stick, by any chance did you accidentally poke yourself on the roof of your mouth a few times?"

"Yeah."

"But you finished that ice-pop 40 minutes ago."

"Okay."

"Then you were playing sports."
"Yep."

"Coby when my body hurts--- I tend to be in more pain when I am sitting still, when I get busy I forget the pain. Is it possible your mouth was hurting as soon as you poked it with the stick, but since you were busy having fun you didn't pay much attention to it."

"I guess."

I had him sit down and drink some water and spray himself with a misting fan. Within a few minutes Coby said, "Okay- I feel much better now."

Pheeeeew. Crisis averted.

I don't think I'll ever be able to completely let my guard down.

But he had a great time last night, and stayed safe and that's what counts.

Meanwhile the boys just stampeded upstairs now and one shouted out "THIS IS THE BEST BIRTHDAY PARTY I HAVE EVER BEEN TO!" Coby took me aside and whispered, "You make me the best birthday parties ever."---and that makes it all worth it.

It is 10:47 and they are all still awake.

Yes it is gonna be a long night.

But my boy is happy. And in this momma's book- that (and safety) is all that matters!

And in case you haven't figured it out by now----

Entenmann's for breakfast!!!!