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!
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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! |
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| 1st time at Baskin Robbins |
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| 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.
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| check out all those open peanuts |
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he hated the smell so he held his nose.
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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.
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"open containers of peanuts in building"- but Coby was completely safe
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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.'
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| 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.
