A WHOLE NEW WORLD

What can I say? It's been a whole new world for our Coby-bear! 

It's been over two months since Coby graduated and he is loving his new life!

What has he done in the last 2 months that he hasn't been able to do before?

1. He no longer has to wear his epibelt around his waist! Yes, he still needs to have his epi-pens with him just in case, but he doesn't need to be WEARING them. He is free to lean back, play sports and run around without having to hold that darn thing up and having to tighten it all the time!

button noting that there's an epipen inside his backpack pocket

2. We took him to CUPS frozen yogurt and gave him a sample cup and told him to go crazy sampling whichever flavor he'd like. And so he did. He ended up buying a brand new flavor too!

3. New foods: he tasted bamba for the first time! (HATED IT--- shocker, I know...) He got to eat yo-crunch and loved it! He got to eat Thomas' english muffins--- and 'eh/okay'ed it.

4. We are able to go out to whatever restaurant we'd like without having to call in advance or drill the kitchen staff about ingredients and allergies.

Rutgers Hillel cafe

5. He came home from his first day of school all excited about some experiment they did with gummy worms. "Mom, the teacher gave out all the extra gummy-worms for us to eat, and there wasn't a label. But I was able to eat it anyway because I finished OIT. And it was delicious! Last year I wouldn't have been able to eat it because there was no label." 

Yep, it's all about those small victories!

6. For the first time ever he's able to go to his cousin's engagement party! He hadn't been able to go to the past ones, but now.... it's a whole new world!

7. He was waiting to graduate to request a brand new kippah- of course he got one!

8. He is now able to TOUCH peanuts!!!! (though I did have him wash his hands afterwards because I am still nervous to have him possibly rub his eyes afterwards)

9. And last but not least--- Simchat Torah--- but I'll get to that in a minute.

First I want to admit that while OIT is amazing, I will not lie and  say maintenance life has been completely stress-free. There have been a few small bumps on the road like:

1. He still really does not like peanuts. Some days he cooperates with his dosing and some days he is really unhappy about it. He often complains about stomach aches and gets nervous before dosing and gets himself worked up. He doses anyway because he understands the greater good but it can be a bit trying at times.

2. He did so far have one minor reaction in maintenance. He complained of itchy lips and his mouth seemed to swell up a bit. Thankfully with drinking extra water and some time it resolved itself and no further treatment was necessary.

3. We still have to watch out for illness, his 2 hour rest period and environmental allergies--- any of those is enough to cause a big reaction while dosing. So we are still always watching waiting and hoping.

4. We almost have 'survivor's guilt'. Every single time I read about another food allergy death (and unfortunately I read about a whole bunch of them lately), it is heart-wrenching. I can't help but put myself in that family's shoes. I soooo wish that OIT was more wide-spread. Just last night I read about a 9 year old who took one bite of a supposedly 'dairy free' pancake her dad made, went into a coma and died. Can you even imagine? 9 years old just like Coby. One bite. They checked labels. It seemed safe. It wasn't. That poor dad. One bite. She's gone. It breaks my heart.

We actually half heartedly went to his allergy walk this year, almost as an after thought. We didn't raise money this year and we felt strange being there. FARE does not support OIT (some speculate it is because they want to line their own pockets with the cash) and seeing all those children with allergies, while Coby is now desensitized made me feel like a traitor even being there. I only took one single picture of Coby during the walk and we left and then bought him ice-cream from the ice-cream truck.

So while mostly we feel happy and excited and blessed and free... some guilt and fears still remain. I have a feeling they always will....

And now back to Simchat Torah---- the ultimate high that we were waiting for....

Simchat Torah had been for years  a complicated holiday for me. I mean it was fun of course and I absolutely loooooved seeing my Mikey and Josh under that big rainbow Tallit as we sang "Hamalach Hagoel" for the children. 

But 

For several years all I could focus on was that 'empty spot' under the tallit. I had been trying to have a baby for so many years and Simchat Torah always symbolized that emptiness to me. Not only did the holiday fall during Pregnancy loss awareness month; not only did it fall right after the anniversaries of two of my losses, but seeing that tallit which canopied all the children just made me long for my baby that I wasn't sure would ever come to be.

Thank G-d he did.

And for 2 years Simchat Torah was wonderful. Happiness, celebration and no more empty spot under that Tallit.

And then Coby had his big reaction. 

And Coby had touch reactions. 

And air-borne reactions. 

And Simchat Torah became all about the poisonous candy that was all over the shul. 

Butterfingers and snickers and take 5s and peanut m & ms.

Simchat Torah became a field of grenades waiting to detonate around my little boy.

But Coby wanted to dance with the torahs.

And Coby wanted to go under that tallit.

When he was younger we'd keep Coby on top of Yitz' shoulders with two lollipops in his fists.

That minimized the likelihood of him taking a poisonous candy.

That minimized the likelihood of him kissing a torah that was just kissed/and or touched by one of those dozens of fingers caked with his poison.

That minimized the likelihood of him dancing and holding the hands of those sticky little fingers that were waiting to detonate.

We also forced him to leave early.

As he got older he begged to stay for all 7 hakafot.

And so we let him.

The entire time I stood by the mechitzah with one eye glued to Coby and the other eye on the look out for all the poisonous candies.

Last year the shul asked people to be mindful of those with allergies when bringing candies into shul. BUT, while there were much less candies with actual peanuts (which was wonderful in minimizing the likelihood of a touch or airborne reaction), many of them still said 'may contain peanuts' so  they were still unsafe for Coby to eat.

AND

"that" story. That adult who took a few kids aside and told them if they are not happy with the candy stock that year, to blame Coby.

Our first experience of food allergy bullying.

Simchat Torah sucked.

And now Simchat Torah 2017.

WHAT A DIFFERENCE A YEAR MAKES!

COMPLETE AND TOTAL FREEDOM!!!!

Yes of course we had his epipens with him.

But we didn't force him to remain up on someone's shoulders the entire time (though of course he asked to be on shoulders for a bit of it because it's fun). We just set him free.

It really felt like we removed the leash that had been bound to Coby for all these years and let him loose.

He was collecting and accepting candy with everybody else. (Actually to be honest, he was a bit confused--- I saw most kids with HUGE bags of candy... Coby didn't really 'get' it--- he collected some candy, but nowhere to the extent that the other kids did.)

But

despite once again the shul saying to be mindful of allergies.... I saw it

(insert evil music here)

Reese's peanut butter cups

Snickers

Peanut M&Ms

Take 5s

And to tell you the truth despite me KNOWING Coby was fine, he was safe---- I was right back where I was for all those years.

My heart started going a million miles a minute.

My stomach hurt.

My hands got clammy.

And I just wanted to run over, grab Coby and take him home. And keep him safe.

It was the first time I REALLY understood what everyone meant when they told me that after Coby goes through the physical desensitization, we will have to go through that emotional desensitization.

I had to talk myself down.

He's safe.

He will not have a touch reaction.

He will not have an airborne reaction.

Even if he eats those things (which I knew he probably wouldn't since he hates peanuts), he won't have a reaction either (though if he eats the equivalent of 6 peanuts, he'd need to do his 2 hour rest period again.)

He is safe.

And he was.

And it was simply amazing to witness.

He collected his candy.

He ran around the shul.

He kissed the torahs.

He danced and danced and danced.

And he was beaming the entire time.

We had more than one person come up to us to tell us how wonderful it was to see Coby being so free.

The following morning he did it all again

AND

that was followed by the biggest kiddush of the year.

Last year we had to scrutinize the kiddush, find out where each item came from. Was any of it safe for Coby to eat?

Last year he ate hot dogs.

This year he was free to eat ANYTHING he wanted. Salads and cookies and cakes and chulent and kugel. He asked to eat the hot-dogs. And chicken. And meatballs. And fruit.

He wasn't sitting in a corner away from everybody else as he had to in the past. He was sitting with his friends and he was able to get up and go to the tables and fill up his plate with whatever it was he wanted.

No more isolation.

No more ostracization.

No more grenades.

Inclusion.

Safety.

Happiness.

Freedom.

It was just amazing being able to witness all at once what OIT has brought to my Coby. 

Sure there are still lots of feels throughout this process and it is a life time commitment.

BUT BEST SIMCHAT TORAH EVER!!!!!

AND HE ABSOLUTELY CANNOT WAIT UNTIL PURIM!!!

It really is a whole new world for Coby.  

A whole new world
A new fantastic point of view
No one to tell him no
Or where to go
Or say he's only dreaming

A whole new world
A dazzling place he never knew
But when he's way up here
It's crystal clear
That now he's in a whole new world with you

Unbelievable sights

Indescribable feeling

Soaring, tumbling, freewheeling
Through an endless diamond sky
A whole new world
A hundred thousand things to see
(Hold your breath it gets better)
He's like a shooting star
he's come so far
He can't go back to where he used to be....

So bring on that next bag of peanuts! It is time for Coby to soar!

24 PEANUT CHALLENGE

Shortly before heading out to his big 24 peanut challenge we decided to try Dunkin' donuts for the first time.... he hated it! Oh well, can't win 'em all!

Coby then put on his final OIT shirt.

He also exclaimed, "Only a crazy maniac would eat 24 peanuts in a row!" But today, a 'crazy maniac' is what we set out to be!

24 peanuts!!!!

He did not have a good time downing those 24 peanuts. He felt too full. He thought he may throw up.  He hurled a bit (but thankfully kept it in) It was just too much....

squeezing my hand as he kept on chewing

"this is horrible!"

BUT HE DID IT!

Once he consumed all 24, the one hour timer was set. (literally- they have a timer.)

During his hour wait several nurses came to check on him and just to visit him...

...To tell him they couldn't believe after all this time he was up to his final in office dose.

...To tell told him how much they will miss him.

...To tell how is like family to them.

They were happy that they'd at least get to see him in 2 months time when Coby comes back for more testing skin tests and blood work to track those IgE numbers.

And the feeling is mutual since when we aren't there Coby REALLY misses that place.

They are all amazing.

During that hour I also watched him.

And I sat there in awe. 

10 months ago to the day he was reacting to microscopic amounts and now---- NOTHING!!!!

How is this possible?????

And after the hour was up, the doctor re-checked him and he....

PASSED!!!!!

And so we were ready to be discharged so we got his certificate now signed by the doctor and showed him his picture up on the OIT GRADS wall.

That's me!

(Jesse also answered my last few questions- for those who are interested:

1. He can try bamba now if he wants. 10g bamba equals his maintenance dose (I'd have to weigh it out), though now he is also welcome to taste it whenever since he is in free eating.

2. He can now try other types of peanut butters (he does have to keep it in his diet every now and then.) 5 peanuts equals 1 tsp of skippy or jif

3. He can now eat honey roasted peanuts or regular peanuts if he likes those better than those shelled peanuts.... and I really hope he does- because it is not fun shelling all those peanuts each week! (Though obviously on Pesach we will have to stick with the peanuts in shells.)

4. He can eat WHATEVER he likes (besides his necessary maintenance dose), but if he were to consume the equivalent of 6 peanuts he'd need his 2 hour rest period.)

And we walked out those doors a bit shell-shocked that after all this time, he OFFICIALLY completed OIT. No more in office dosings. No more up-dosing. 

He is done. 

He did it. 

He is free.

FREEDOM!!!!!!!

We pray for an uneventful night, but we are now 2 hours post-dose, and so far so good!

On the way home I asked Coby, "how are you feeling?"

His response, "Heroic."

Indeed you are, little man. Indeed you are.

And in case you are wondering, yes, there will be Chinese for dinner.

For the first time ever!

Cue the skipping off into sunset music...

UNREAL....

THE FINAL CHALLENGE

I cannot believe this is it. We are just hours away from Coby's final food challenge. He has been on maintenance now for 4 weeks, eating 12 peanuts every single day (other than the one day the doctor had him skip) and today he will be put through his final test. THIS is what will show if Coby's body is truly desensitized to any amount of peanut.

I am petrified. All this time we have been going up by fractions. His biggest peanut jump was from 10 to 12. Today he is expected to do the TWELVE PEANUT JUMP.

How is that possible?

10 months ago TODAY he had his very first peanut dose. 1/1,200,000th.

Today he will be expected to eat nearly 29 MILLION TIMES the amount he began with just 10 months ago today.

I can't even.

This morning facebook showed me this "ON THIS DAY" memory. 1 year ago TO THE DAY Coby had and passed his hazelnut food challenge.

My status update included with this picture was:

"He passed!!!!! And we are getting out earlier than anticipated! (Doc said if we now keep it in diet just a one percent chance of developing the allergy).... Now if only we had a cure for the peanut allergy that would be awesome!"

Who knew that one year TO THE DAY later, while not exactly a 'cure', he'd be having his (hopefully) final day of oral immunotherapy? As close to a cure he may ever come.

Talk about from one's mouth (or status update) to G-d's ears...

4 hours and 41 minutes and counting...

WELCOME TO YOUR NEW WORLD: MAINTENANCE ON VACATION

I cannot believe we are just four days away from Coby's 'final examination'. This Thursday he needs to be able to do the 12 peanut jump and consume 24 peanuts in one sitting without any problems.

THIS will be his ultimate test.

And yes, I've already began having bad dreams about this. I also dreamed that I kept cancelling and rescheduling this appointment. I kept freaking out saying how no time will ever work for this appointment. How we just can't do it. So yes those mutant butterflies have began flapping their wings. I'm sure they will only grow stronger the closer we get to Thursday.

Thursday, exactly TEN months to the day from his very 1st peanut dose.

If he succeeds he will be able to have completely free eating. Chinese food will once again be allowed into our homes. There will be no more "NO"s in terms of what he can and can't eat.

Coby is so excited to be able to go back to see his medical staff. He has missed them. Every Thursday since graduation he's been kept busy but still he misses them and has been asking to go back.

That first Thursday after graduation he saw Mary Poppins.
The following Thursday he was at six flags with his camp.
The following Thursday he went white water rafting in West Virginia on our vacation

and yes of course his epipens came with us- you can see them in a waterproof tight bag in Yitz' left hand in the top pic and on his lap in the second.

And this Thursday he will be going back to his beloved Suffern office.

So yes, this past week we've been on vacation which was lots of fun. This was our first family vacation in over six years that we felt free!  Coby was able to eat what-ever (kosher thing) he wanted to without having to check labels. He is becoming quite that ice-cream connoisseur.

"may contain peanuts"- but we don't care!

Peanut butter flavors next to the plain vanilla one- cross
contaminated scoop- but he's completely safe.
A chunk of another ice-cream flavor even ended up in his
 vanilla- and it didn't scare us one bit!

1st time at Baskin Robbins

1st time at Ben & Jerry's

In terms of dosing-at times it was kind of stressful, but it has been so worth it. Some of the days we were able to carb Coby up and dose him during our 4 hour car ride. That is what we did on Sunday before heading out to Ocean City for some jet skiing fun.

The "Nut House" on the boardwalk had lots of open peanuts- but no fears here!

On Monday we were also able to dose him before the long car ride from Assateague Island

to Virginia Beach for eclipse viewing and beach fun.

Tuesday was our biggest problem. We did not have any long car ride which would keep Coby out of the heat and resting for several hours. (In the summer if you go out in the heat even within 4 hours of dosing you can have a reaction.) Our doctor told us our best bet that day would be to dose him right after breakfast, before his speedboat dolphin tour. The problem was, he'd still have about 45 minutes outside in the heat before the speed and splash of the boat would take effect. We found an umbrella to keep Coby in the shade (other than during this pic) and instructed him to keep his misting fan on him at all times until the boat took off. Thankfully all went smoothly!

Afterwards we headed to Norfolk where the ONE kosher restaurant we were able to find for our entire stay was located. We didn't even ask about ingredients and ate with no fear. Coby though refused to eat anything other than fries and plain pita.

After we left the restaurant I opened facebook and was met with a horribly tragic story. A 26 year old tv producer was vacationing with friends in Budapest. She had nut allergies. She spoke with the restaurant and informed them about this but she took one bite of her chicken dish and realized she just had a bite of something with nuts. Despite using both her epipens, she went into anaphylactic shock and had a heart attack. She was pronounced dead for 6 minutes before they were able to revive her. She was then in a coma for 3 weeks. She miraculously pulled through but now has severe brain damage and is under the care of her parents. Insurance will not cover any of this claiming it is a 'pre-existing condition' nor can the family sue the restaurant.

http://nypost.com/2017/08/22/single-bite-of-food-leaves-tv-producer-dead-for-six-minutes/

Horrific. 

I feel for that family.

I am so relieved we did OIT for Coby knowing we no longer have to fear that 'one wrong bite'. I also have guilt thought that while Coby is thankfully now on the other side of all this, there are so many others who aren't.

By then 4 hours have passed but we still instructed Coby to keep that misting fan on him. When he couldn't be inside,

he remained under an umbrella on the beach with that misting fan while Josh fly-boarded.

And then we continued on to Williamsburg. 

Virginia is very popular for all its peanuts. In fact we even passed a billboard on the highway.  We were going too fast for me to get a good pic- but you get the idea.

Later that day in Williamsburg, we decided to visit the peanut shoppe. Last time we were here Coby posed outside for a picture and we jetted. This time he jumped for joy knowing he was now safe. 

 We also ventured inside for several minutes. Coby was able to touch whatever he wanted without fear of touch reaction.
He was able to be near all the open canisters of peanuts (free samples) without fear of an airborne reaction. he didn't even get so much as a sniffle.
His family was able to eat all the free samples they wanted without having to fear that holding or kissing Coby could cause a reaction.
Coby could have even eaten a sample if he wanted, but he didn't want to.

check out all those open peanuts

he hated the smell so he held his nose.

 Thank you OIT!

Williamsburg is HOT. Thankfully by the time we spent a few hours touring historic Williamsburg it was about 7 hours post dose (though he still kept the misting fan on him).

In fact when we were waiting for "CRY WITCH" to begin Coby kept TWO misting fans on himself!

In the olden days there was no a/c- thankfully though the inside of the buildings was air conditioned! We were chosen to be the governor's council for the trial.

Wednesday we were off to Busch Gardens. Coby's doctor instructed us NOT to dose Coby at all that day- since going out into Williamsburg heat and being outside all day at an amusement park would be too much of a risk. So he did not dose at all.

"open containers of peanuts in building"- but Coby was completely safe

Since Coby didn't dose at all on Wednesday, I was obviously nervous to dose Coby on Thursday going from zero back up to his dose of 12. We were able to dose Coby before our long car drive to West Virginia and thankfully it went without a hitch and seven hours had passed before we needed to be out on that river!

And obviously by the time we hiked a bit of the Appalachian trail that evening, is was WELL beyond dosing time!

And on Friday after zip-lining, we again dosed him in the car during our long car ride back home.

VACATION FREEDOM!!!!

OIT has been a blessing. Besides making Coby safe to enjoy the world, it has taught him so many lessons that will serve him well in life. 

There were lots of parts of this vacation that scared him. We talked about it beforehand. He knew he wanted to try everything despite his fear. Because of OIT he realizes that in life the things that scare you are the ones worth doing. He knows that by facing his fears those fears get squashed. If you don't face your fear, the fear grows and can over-take you.

He was scared of jet-skiing. 

He was scared of boogie-boarding. 

He was scared of zip-lining.

Can you guess what his favorite three things from vacation ended up being?

1.   JET SKIING!

                   He begged to go again.....

2.                                               BOOGIE-BOARDING!

He begged for more and more....

3.  ZIP-LINING!

Coby was upset when the guides told him he'd need to tandem zip for the last two lines since he weighed too little to do it solo. He wanted to do it all on his own!

 

And yes, of course we needed to get some ice-cream after zipping. Coby chose an ice-pop... but even that ice-pop said 'may contain peanuts.'

Coby with our awesome guides

OIT has given Coby his life back. He is now able to walk down that boardwalk and eat whatever he would like. Instead of having to scour that label for peanut warnings- we are back to simply checking for kashrus.

He is now able to go where ever he would like without having to fear an airborne or touch reaction as had happened in the past.

He has learned to never give up.

He has learned that by facing our fear we can conquer anything.

  

                       After that 1st ledge he was able to step off that ledge with barely any fear and fly. 

He can soar.

He can fly.