THERE AINT NOTHING LIKE THOSE POST OIT HOLIDAYS

Everytime we hit a post OIT holiday I get super-excited. Coby now gets to experience all holidays and events like any other kid should be able to.

Chanukah?

Bring it on!!!!

1. Coby was able to go to his school's Chanukah party without us having to do any research into which caterer was being used or where those donuts were coming from. Booya!!!

2. For the first time ever we were able to attend our shul's Friday night Chanukah dinner. Booya!!!

3. Donuts, donuts and more donuts. Buying them from where-ever. I was actually shocked that my picky boy devoured entire jelly donuts!!!!





















4. More Chanukah celebrations with absolutely no concern about where the food came from... and yes that is another donut he is holding in his hand.

5. "May Contain Nuts" Chanukah gelt!!! I actually had a 'nightmare' that the only gelt I could find was the "Nut free" types and I was soooo upset about that and was stomping up and down those aisles trying to track down a 'may contain peanuts' version.
Thankfully in real life I did.
The irony....

Though I did have to bribe my chocolate hating child to taste one....

But guess what----

 he loved it!!!!
It's a Chanukah miracle!!!

6.  Going into our local store and being able to buy whatever treats I wanted. Gelt of all types--- including white chocolate that I know he will like. Donuts. And candy-filled dreidels. Booya! (I actually had to restrain myself from buying even more!) 

7. On the last night of Chanukah, the grand finale... we presented Coby with a Ghiradelli gift-card. 

You see- the last time we were at Ghiradelli Coby was soooo hopeful that he'd be able to get a milk-shake but unfortunately it was not safe for him....

January 2017

...so I promised him that when he finished OIT the next time we'd be back I would get him that milk-shake---
It took a few moments, but soon Coby realized what that gift-card meant!

(The 2 minute reveal video exceeds the limit to include in a blog post :(, but it is soooo cute- feel free to watch it on my fb page.)

And so Chanukah ended on a high... but just because the holiday ended, it does not mean that the OIT rewards have ended. It is a gift that just keeps on giving.

This week he will be able to COMPLETELY be a part of his cousin's wedding too.
The last wedding he went to, thank G-d the food was safe enough for him to be around, but not safe enough to eat. We had to bring his own food in a thermos. This time--- no thermos food for him! Booya!

This past weekend Coby he was able to go to his cousin's aufruf. It was a pot-luck weekend and this was his first time ever he was able to partake in a pot-luck type event. He had such a blast. All other weekends like that in the past he and I had to stay home. This time he able to go, eat whatever he wanted and really be a part of a family celebration with everybody else. My heart was beaming for him.
Obviously my sister in law could not sleep over 40 people in her home, so while dinner and lunch were in her home we slept at one of her friend's house. Ironically enough, the cereal that the people whose home we were staying at left out for us for breakfast---- was peanut butter cereal. Coby wanted none of that- but I had to smile at the irony of it all.

Oh and speaking about peanut butter, after Coby's last reaction to that full dose of peanut butter, our doctor told us that for whatever reason some people just have these reactions to peanut butter despite being in maintenance. As long as Coby does not want to freely eat peanut butter we should NOT give him the full dose of peanut butter, but keep it at the level his body can tolerate (2 tsp vs. 2 and a half) and keep giving it to him every 2-3 weeks to keep his body somewhat used to that form. If the time comes where Coby were to want to begin eating peanut butter freely, then we'd figure things out then and build him back up. It's so weird to me because he is able to free eat all other forms of anything... but peanut butter is still giving us a run for our money.

But all in all the last couple of weeks have been OIT reward one after the other.
Next up----
the wedding
Disney and that Ghiradelli milk-shake
and.... PURIM!!!!

BRING IT!!!!!

WELL IT WAS A NICE FOUR MONTH RIDE UNTIL TONIGHT

...so Coby had a reaction tonight.

I mean, I KNEW chances were more likely than not that he would have a reaction every now and again with dosing but it's still nerve-wracking when it happens.

It's just proof that while he is desensitized to his allergen, he is still very much allergic, and extenuating circumstances can at times tip his 'allergy bucket' and cause a reaction.

Just yesterday I commented to everybody that this was the very first November (other than when he was 3 months old) that he did not get sick with a something or other (past Novembers he's had streps, pneumonias, double ear infections, bronchitisses)--- so I actually have been treading this past month waiting for that other shoe to fall.

KABOOM..... (but we still made it through November illness free- so booya to that!!!)

Today we dosed him with peanut butter. He has been dosing with peanut butter every 3 weeks as per the doctor's instructions with no issues since graduating, BUT until today he's been PARTIALLY dosing with peanut butter. Today he FULLY dosed with peanut butter.

Until today the most peanut butter he had ever eaten was two teaspoons which is the equivalent of 10 peanuts (and then he ate two actual peanuts too to complete his dose).

Today he dosed with 2 and a half teaspoons of peanut butter and zero peanuts.

Right after dosing he said his lips were a bit itchy so we washed his lips with water and he said he was fine.

3 hours later we noticed he was scratching quite a lot... So we picked up his shirt....

Pictures don't do it justice. He has teeny dots all over his torso and a bit on his legs as well. He has some mosquito type bumps and some larger hives.

We took pictures and sent them to the doctor and paged him.

The doctor told us to treat him with benadryl and the steroids and to watch him to make sure the reaction doesn't progress.

The doctor told us when a reaction happens it is usually for one of two reasons:

1. He may be getting sick but his body has not shown symptoms of the illness yet. (which wouldn't surprise me in the least since, until this year Coby had always gotten sick each November---- , so maybe it's coming...)

                                                              OR

2. Since this was the first time dosing FULLY with peanut butter his body just can't yet handle that form all at once.

If come tomorrow Coby does not develop a fever then we are to dose him fully with the 12 peanuts. If nothing happens and nothing continues to happen then tonight's reaction is probably due to the peanut butter form and next time we dose with pb- a month from now- we should possibly decrease the amount of peanut butter back down a bit (we'd call them back to verify this as that day comes closer)

If Coby does end up getting sick, then that is probably the cause of tonight's reaction and we are to call back on how to dose him with illness.

Meanwhile I have a headache, I'm grinding my teeth and am feeling stressed out.

I am trying to remind myself that he has been doing amazing.
He has been enjoying life.
Until today he had no real issues.
.... that we knew issues would crop up.
2 and a half teaspoons of peanut butter used to have the power to kill my child many times over--- and now it caused some hives.
It's okay.
We'll get through it.
We are still learning as we go through it.
But we will get through it.
All his continued hard work is so worth the many rewards it has already offered him.

Just yesterday a stranger reached out to me to let me know that her 9 year old was terrified to begin OIT. The doctor sent them the link to Coby's video and she told me while still nervous, her son is inspired by Coby's bravery and is set to start OIT in just 2 weeks. Despite graduating 4 months ago Coby is still inspiring others and changing lives. How cool is that!

I also noticed Coby's game name he calls himself when playing agario on the computer----

Too cute...

And he had an amazing Thanksgiving.

We took him to see COCO (which has been Coby's main nick-name since birth too) and this was the first time ever we took him to the movies and did not have to wipe down the seat!

We were able to take him to a brand new restaurant even though this restaurant would have otherwise been unsafe for him pre-OIT. I mean, they even served peanut crusted chicken. Coby loved it! Well he loved his spaghetti and meatballs--- he tasted all 3 types of pie--- eclair, apple and pumpkin and hated them all--- but he was safe and free to try them and that is what counts...

When we were leaving the restaurant we noticed that the theatre's marquee was wishing everyone a Happy Thanksgiving--- Peanuts themed too!

And when we got home Coby composed a list of things he is thankful for...

He told me that "OIT is the biggest because it is most important." His doctor's name is even listed above 'family'.

So it's good.
It is good.
It has been going well.

Until today.

But even though he reacted, the reaction happened (hours) after dosing when I was home to handle it. It did not happen when at school or randomly when out and about. It was self contained in the form of hives and did not spread. It did not happen because some moron wanted to test him to see if he was truly allergic...

I write that last sentence because just tonight I read an article about a grandmother who did not believe her grandchild was truly allergic so she had been baking cookies laced with her grand-daughter's allergen for the past year waiting for the moment she could sneak it to her 3 year old grand-daughter.
Yes, you read that right...
 Let's just say the grandmother has been proven wrong. The grand-daughter is lucky to be alive. And that grandmother will never be seeing her grand child again. If you wish to read the full story about this nut-job (no pun intended) here's the link---
http://www.suggest.com/lifestyle/1725211/crazy-mother-in-law-tried-to-kill-her-granddaughter-by-feeding-her-a-laced-cookie?utm_campaign=sug-fbk-m-us-412d82aa&utm_content=1050&utm_source=fbk&utm_term=sug-fbk-m-us-412d82aa.i59wsogh

So anyway....

Here we are.
Me listening through the baby monitor and running fifteen minute checks to inspect my kid.
It's gonna be one of those nights.
Inhale.
Exhale.

Oh.... almost forgot--- we got Coby's first post OIT tests back. Some were amazing. Some were not. Some were to be expected.
Some were not.

By 'some were not'- I mean HE DID AMAZING ON HIS SKIN TEST. He did sooooo much better than the doctors thought he'd do at his very first post OIT skin test.  I posted pictures in my last blog entry, but I did not know the exact measurements until the doctor sent them.
On his first skin test before beginning OIT at the ONE PERCENT level his reaction measured 12 x 24.
On this skin test at the ONE HUNDRED PERCENT level his reaction measured 7 x 12.
WHOA!!!!
And the doctors say skin test matters more than the blood test.
And his, while still positive, have fallen drastically!!!!!

Blood work--- wasn't as good.
The two numbers that are most closely associated with risk of anaphylactic reaction INCREASED a bit- going from 33 & 35 up to 41 & 42.
But the doctors actually warned me that it's normal to see an increase before the numbers begin to fall. I wasn't happy to see the increase, but I was comforted in being told it was normal to see that.
His total peanut IGE numbers did actually decrease from 88 down to 64.9

So on a whole---- WOW! In early February he will be re-tested to see where his numbers stand then.

In the meantime- we hit a little bit of a bump.

No one promised us a 100% smooth ride--- in fact they said be prepared for those occasional bumps.

So after 4 months we hit a bit of a bump.

No one promised us it would always be easy.

And we're still learning how to navigate this road.

We got bumped and the coming days will hopefully explain why.

Learning as we go.

But my G-d, how far we have come!

But still.

Inhale.

Exhale.

FIRST POST OIT TESTING, SOME PLEASANT SURPRISES AND SOME NOT SO PLEASANT

Wow that appointment took forever----  nearly 3 hours. We thought we'd be in and out in under an hour.

It was so strange and surreal being back there.

I'm baaaaack!

We saw people in the waiting room at the very beginning of OIT/ the liquid stage carrying their little OIT coolers. Weren't we JUST those people? And here we are now carrying around his OIT GRADUATE bag they presented to him when he graduated.

I bumped into someone I met during Coby's journey, who has been doing OIT for 3 years with her sons (they have a lot of allergies). She told me one of her sons is doing completely fine conquering one allergy after another and her other son had to drop out during his wheat OIT because he developed Eosinophilic esophagitis (EOE). (Her son was actually the one we witnessed go into anaphylaxis on his day 1 of wheat OIT) EOE was one of my fears when doing OIT--- it doesn't happen too often but it can happen. She has a great attitude though saying one son is still doing fine and even the other one was able to knock out a whole bunch of his allergies with it, but still- oysh

We also saw another little girl who was up-dosing to 6 peanuts today and she was so cute chanting, "I want peanuts, I want peanuts!" Coby asked me if we could adopt her. :)

Several nurses and the doctor came in to say hi to Coby. They asked how his life has changed since graduating.
Oh let me count the ways....

The doctor actually said, 'oooh what shirt are you wearing today?' And crap because I didn't put him in any type of OIT inspirational shirt because I didn't think just testing needed one. His shirt does say "I'm what's up!", so I guess it sorta works but not really. She did admire his Peanuts kippah--- so in that we were still OIT themed ;).

The doctor told me she wouldn't be testing his environmental allergies again today because they wouldn't have changed in the year. She told us to get him back on the zyrtec and flonaze from March until early July.

They then began his skin test by putting in just the saline solution to see what a negative response may look like, the control solution to compare a reaction to and thepeanut solution at just the 1% level--- same as last year. And then the waiting began.

1% going in

And we watched and waited

We could not look away from his arm. It seriously felt like waiting for a pregnancy test (though this wait is a 15 minute one, not a 3 minute one), but instead of staring at the pregnancy test willing that second line to appear--- we were staring at his arm willing for the hive NOT to appear.

And during those 15 minutes barely anything appeared!!!!

ARE YOU KIDDING ME?!

DID THAT TEST JUST COME OUT NEGATIVE?!

The control 'dot' though looked so small compared to last year's and Coby felt zero itchiness to that spot either that they decided to give him a second histamine control and we then had to wait another 20 minutes to see what would happen to that control.

The 2nd 'control' did itch Coby a bit and was bigger than the first but not too much.

And yep, NEGATIVE ALLERGY TEST at the 1% level!!!!

Just for comparison's sake... take a look at this year's test compared to last year's:

        October 20, 2016

November 9, 2017 (this pic has the 2nd control as well)             

I even pulled up the above picture and showed it to the staff and their jaws nearly hit the floor. They said, "THAT was the 1% level?! Thank G-d we didn't give him the full dose!!!"

It was only then that they explained to me that a reaction isn't just measured by the 'mosquito bite type bump' you can see that is quite a bit bigger than the control in that first picture--- but in fact all the redness that surrounds the bump is part of the reaction as well. They actually MEASURE from one point of the red to the other end of the red.
So while I knew that at 1% that bump was still several times more the size of the control, it was only today when I took into account all the redness did I really realize how much bigger that 1% really was. Wow!!!!!

And then the doctor decided to go ahead and test his skin at the 10% level!

Leveling up

BTW check out his new allergy bracelet

And holy crap!!! While you do see a bump bigger than the 1% level and it did itch him- it STILL wasn't as big at the control level one! (they measure each bump as soon as the 15 minutes ends and write down that number because the bump may begin to decrease as did in Coby's control after that half hour went by, so they had the proper number to compare them too.)

The doctor then decided to go all for it----- FULL STEAM AHEAD and give Coby the FULL DOSE at 100%. 
I did not at all expect to hear this and surprisingly I actually got super excited. We all did! I literally did a dance in my seat and felt what must be what a kid on Christmas morning feels like!!!

The doctor told us to expect a reaction. She warned us it may even be similar to the big reaction he had last year.

Entering the big leagues here. Full dose going in!

BTW this nurse is AWESOME. Coby was asking her so many questions and she got eye to eye level
and was answering each and every one so patiently and making sure he completely understood.

And after the 15 minutes went by.....

Yep so this one is a positive reaction--- but this is at the 100% level. This is NOTHING compared to the 1% of last year.

It's miraculous!

The area was itching him a bit so they rubbed some cream on it to help with the itchiness.

And then it was time for the blood test ....

Gearing up

...and that's when things went downhill.

 First they tried to get a vein in his right arm (since he's a leftie) and they couldn't get one. Then they looked for a vein in his left arm and sort of got one but it was going soooo slow and then the vein collapsed.

Looking for a vein in 1st arm

Working on the 2nd arm

This arm gave up...

 Three nurses came in to try and help. One brought a portable light to hold up and shine directly on his veins. (Yitz didn't take any pictures at this point because he couldn't see us through all the nurses anymore)

A different nurse took over and she was amazing telling Coby how wonderful and brave he is. I asked the nurses if they could write a prescription for a milk-shake for our little warrior. They laughed and said, 'sure- can you bring us back some too?' :) Thankfully she successfully was able to complete that blood test finishing off back in his right arm.

My brave brave (but unhappy, but stoic) boy

Pheeeeew.
Done.
Well, we THOUGHT we were done and we went in to chat with the doctor.

First she listened to his heart and lungs, paused and asked, "Has he been coughing recently."
Uh, no.

She then informed us that Coby was wheezing.

WHAT?!

She said that it was possibly related to his final skin test of the day. He had been through a lot. Not only did he go through the one at the complete level. The 100% dose was on top of TWO histamine controls, followed by the 1% level, then the 10% level, and only then the 100% one.

I sooooo did not want our day to be ending with a reaction. 
I mean COME. ON. 
We were nearly out the door. 
Don't let the appointment take a turn like this.
Are you kidding me?

I asked if the wheezing possibly could be related to that blood test. That horrible blood test. That painful blood test. That forever blood test That awful blood test.

She said, "It very well may be related to the combination of the stress of that blood test together with the peanut skin test because a dose and stress (or illness or exercise or heat) ups the chance of a reaction. It's possible this wouldn't be happening if the blood test went smoothly."

She had him do a peak flow which came back PERFECTLY.
She then re-listened to his lungs and---- the wheeze was gone!!!!

She however said that while it is great the wheeze went away on its own and so quickly, the wheeze was definitely there in his left lung and she wanted to play it safe.
She gave him a dose of benadryl
And a dose of oral steroids
And told us NOT to dose him with his regular dose tonight.

Sigh.

I her, "Do I need to sleep with a baby monitor again tonight?"
She replied, "Well we know Coby and his strange reactions and often delayed but he should be fine now."

She told us that his blood results should come back within the week but not to be surprised if the levels actually climb to start. She said that Dr. Selter gives more weight to the results of a skin test than a blood test-- and we see today how amazing he has done with those (despite the iffy ending).

Coby asked her if he could change his dosings yet and she told us if we wanted Coby could down-dose to 8 peanuts instead of 12 BUT that would mean no more 100% free eating anymore. He would have some, but not all he has now. She said usually the parents who choose to down-dose to 8 do so if it's a complete battle to have their kid eat the 12 peanuts and have no interest in the 100% free eating. We said that while he hates that peanut butter, he is okay dosing with the 12 and we're not going to mess with a good thing and let's just keep it as is.

She said that it is possible that he may develop a liking to peanuts as his body desensitizes more and more since the body naturally hates what is dangerous to it, but as it desensitizes...
I told her Coby was really asking about his dosing not to find out about decreasing it and losing his freedom but was wondering if the time will come when he wouldn't have to dose every single day or perhaps rest for so long.
She said if that were to happen that would probably be years away. I told her my main concern is the college years and she said by then there should be soooooo much more information out and there's plenty of time before that.

She also told us that she has patients beginning OIT who are so nervous (which I completely get) and she directs them to Coby's blog and his OIT video and it helps calm their nerves. That's my rock-star- continuing to change lives of others!

She then had us wait around for another 15 minutes to make sure Coby was really okay. They then performed another peak flow and lung, and blood oxygen level test. It was all clear and we were discharged.

We get to do this all over again (but hopefully with a better ending) in 3 months.
And then 6 months after that.
And then annually from then on out.

On the way home Coby was falling asleep (medicine side effects) but we filled that prescription which perked him right up. Coby exclaimed that that Haagen Dazs milkshake made that awful blood test worth it!

And now while we wait for the results of that blood test I sit here amazed by what I witnessed today. While it was not the perfect ending I had hoped for (which that stressful blood test may have brought out), it was SUCH a monumental difference from one year to the next. And really--- never in a million years did I expect to see such a huge difference in his very first skin testing post OIT.

Miracles don't necessarily come in a perfectly wrapped package, but one can still choose to see them for the miracles they are.

TESTING TIME

...and here we are the night before Coby's allergy tests. It was so strange getting that reminder phone call once again about Coby's Thursday afternoon appointment. I mean, it has been more than 2 months since he's been there last. We used to get that reminder phone call every single week.

Coby has been freaking out a bit about tomorrow's test. He's nearly in tears about "my blood shot". And he's very nervous about all the pricks that are involved in the skin test and he remembers vividly how itchy he got last time around yet not being allowed to scratch.

Tomorrow they will see if OIT had any effect on his IgE numbers at all. It's kind of a crap shoot. They told me not to be surprised if Coby's allergy level got even worse. (He was/is extremely allergic at level 5). After all his body is being flooded by his allergen on a daily basis and it may make those numbers climb out of whack.

While doctors are hopeful the IgE numbers will begin to fall it still may not be for years to come.

Coby is praying that his numbers fell substantially. If they did, they may allow him to skip dosing a couple of days a week. Or they may allow him to shorten his rest period a bit.

But I don't know....

Any change worries me.

Of course I want his numbers to fall, but I'm also asking myself- why fix what ain't broke... and if dosing every day with a 2 hour rest period has been working, why mess with that?

(I know, I know... dosing the way we do now is not feasible to do forever (though it very well may come to that). Teenage Coby, young adult Coby--- may forget, or he may be out with friends and may not be able to sit still for 2 hours or he may be at college or on vacation and not have his dose with him, who knows. The ultimate goal is that this leads to the cure...)

I feel for my kid who really does not want that 'blood shot'- as any mom would feel for her kid... but while the blood test itself doesn't worry me.... the RESULTS that will come in a few days are what worries me. While I am still too afraid to tamper with how we dose him, I still want/need to see those numbers begin to fall.

Tomorrow's skin test is a whole other story...

Skin is the last organ to desensitize from its allergen since it is the biggest.

Last year, for the skin test, they decided to dilute the peanut solution down to 1% of what they usually do due to the severity of his allergy.
Despite it being diluted by 99% his reaction ended up being 'too substantial compared to the amount of peanut solution we put in him' and they ended up treating him with benadryl andsteroids and watching him for quite a while to make sure it didn't progress further.

So what will happen tomorrow?

I previously asked Jesse if they will once again be diluting it down to 1% so they can accurately compare this year's results it to last year's.
She said they probably WILL dilute it down to that to start, BUT if THAT test comes back negative (dare I to hope), they would probably do the peanut skin test at its regular dose--- which is 100 times the amount of what he had done last year.

Um---- Skin last organ to desensitize yet 100 times the dose????

Can something happen from that tomorrow?

One year ago today Coby was struggling with his 1/12,000th dose. and now he eats 12 peanuts every single day. That is crazy. That jump is way more than 100 times, but still I am worried about the skin test tomorrow. Though I must admit, I also am quite curious for those results.

They will also be testing his environmental allergies to figure out a plan about when/if/and for how long we will begin medicating him with the flonaze and zyrtec to keep those allergies at bay.
He was put on both those medications last October and taken off in June.

Ideally they don't want him on extra meds for all that time--- but if we don't get control of those allergies, those allergies together with peanut dosing can bring out a BAD reaction, and obviously we do not want that to happen either.

They need to help me figure out the balancing act.

So that is what tomorrow (and the days that follow) will bring.

After tomorrow's tests I believe Coby is on testing break for the next 6 months.


In the meantime I am constantly replacing Coby's wardrobe these days. During OIT he gained TWELVE pounds!!! That brings him to about the 50th percentile mark so that's good but it also means he outgrew all his clothes--- especially his pants.

We search online for clothes and I can't help but noticing all the shirts that would have been great for Coby's up-dose appointments if he were still going through it (but thank G-d he is not!)

I still can't believe all we accomplished in under one year's time. I am re-reading my blog and am in awe of all my kiddo has accomplished. I read about all our doubts and questions--- and so wish the me of today can talk to the me of one year ago. All the struggles, all the unanswered questions and doubt, not knowing what was coming---- and boom now year later and we are on the other side.

It is CRAZY!

There are three things in my life that make me say HOLY CRAP DID I REALLY DO THAT?
The first one was going through all those years of fertility treatments. Never in a million years did I imagine I'd have the courage and ability to go through all that. I look at my Coby bear and am soooo thankful that we did it, obviously, but still to this day when I think back to it I shake my head in wonderment that somehow we got through that. (I sooooo wish I blogged about that, but we were mostly keeping that under wraps while we were going through it and only shared some of our story after we made it through the other end. And I only began sharing about it when quite a number of people assumed Coby was a 'whoops' baby and I needed them to shut the hell up and realize he is the very opposite of a whoops baby! I actually did end up writing a book all about it. I didn't try to publish it though I did send it to people who asked to read it.)

The second one was allowing Josh to get on that airplane that took him away to Israel for the year. He's been back for 2 and a half years now and I still have no idea how I didn't tackle him to the ground refusing to allow him to get on that airplane.

The third one was going through oral immunotherapy. It was terrifying. It was impossible. Yet here we are on the other side of it and I am simply blown away.

I never really thought myself as a strong person but I guess you figure out exactly how strong you are when you need to be.

And still, several times a week it seems, I am reading about another food allergy death. The most recent one being a 3 year old in Manhattan. His school knew he had a dairy allergy yet one of the teachers gave him a grilled cheese sandwich. No mention of an epipen either. Just that they got him to a hospital and he died.

WTF???

None of that makes any sense!!!!

Food allergies have no cure. The closest thing to that cure is OIT yet OIT is not a 100% guarantee of never having another reaction either. The ONLY thing that can save lives is education. People don't get it!
Recognize the signs.
Don't feed an allergen to a food allergy kid.
Have an epipen.
Know how to use it.
This little boy dying is so stupid!!!! Besides feeling so bad for his family, it pisses the hell out of me. Get a clue people!!!!

Ignorance kills.

Once again I am thanking my lucky stars that Coby did OIT and how much safer he is now. I (mostly) don't have to worry about the ignorance or stupidity of those around him. I (mostly) don't have to rely on the education of those who care for him.

A few days ago we practiced epipenning with all our expired epipens. This was the first time I allowed Coby to do it himself with no assistance at all. I also re-taught him  how to give it to himself if (G-d forbid) he needs to.

He even made a video that can teach others how to properly give an epipen.

And once again it is also about the small things...

...for the first time ever Coby was able to buy candy from a machine. He never could do that before because even if that particular candy may seem safe--- you do not know about the facility it came from nor do you know if another, possibly unsafe candy was in that same machine before causing cross contamination.

...he was very excited to be able to go to Shoprite with Yitz. He hasn't been there in forever. When I tried bringing him when he was 3, we passed by a bin of peanuts and he started having a reaction. Itchiness, coughing, sneezing, runny eyes--- we had to get out of there fast... And now----

"That was so much fun!" He exclaimed.

...we celebrated his one year OITversary in 2 ways. On October 20th--- the date of his OIT consult and the beginning of the journey for us we took Coby to MOCHA BLEU. He was plotzing to go to a dairy restaurant with waiters. It was absolute bliss for him.

He was so cute in how clueless he was. He asked if they were called waiters since he had to wait for his food. He felt very guilty when we were walking out of the restaurant without "we need to clean up after ourselves and not make that man do it!"

and we celebrated his one year of peanut dosing (which was Oct. 31st) by having him eat goobers. When we began OIT we did so with much fear and trepidation remembering that horrible night when 2 goobers almost took him away from us. And now we decided to show those goobers who is boss. Instead of eating just 2 goobers--- he SAFELY ate 3! (He could have eaten the whole box if he wanted to- but since he doesn't like peanuts. or chocolate. he was absolutely fine stopping at 3--- he just wanted to show them who is now boss!)

holding his nose because he still hates the smell!

MISSION ACCOMPLISHED!

 And just a couple of cute Coby and post OIT stuff.
Just tonight he informed me that he decided to use OIT as a user name for a computer program at school.

And on Sunday we went on a hike. We had planned on doing a simple one mile trek since the weather wasn't ideal... until we saw the name of the more strenuous hike.

PEANUT LEAP CASCADE!!!!

OBVIOUSLY WE HAD TO DO IT!!!!

Sure it meant the one mile easy hike turned into a 2.5 mile strenuous hike up and down very steep and slippery steps on the edge of cliffs in a bit of rainy weather.... but with a name like 'peanut leap'--- it's not as if we had a real choice in the matter! ;)

And after we all survived that Hike (yep that's hike with a capital H- it was a doozy!!!), we rewarded ourselves with lunch in a new pizza restaurant--- and yep, you guessed it- we did not bother questioning them if it would be safe for Coby.

Because we don't have to anymore!!!!! 

The proof is in the pudding. Even if that pudding 'may contain peanuts'. (okay snort)

The proof is in having witnessed Coby eat 12 peanuts every single day for the last several months.

Here's hoping tomorrow we find out that the proof is also in his falling IgE levels.

Good luck Cobester!!!!

You've come a long way baby!!!

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!