2 WEEKS 4 REACTIONS....

Wow, nearly three months since I last blogged. A new record!

All in all Coby is really enjoying his new life that OIT gave to him. He has done many things he otherwise would not have been able to do pre OIT.

Just in the last few months
-he's gone to the movies without having to wipe down seats

-he's gone to several Chanukah parties he wouldn't have been able to go to in the past

-Dunkin Donuts for Chanukah

-family events with no worries

-a bar mitzvah

- new restaurants

Of course we go with our epis, but otherwise it is no fear. He goes. He sees. He eats. No worries. It's wonderful.

It is the dosing itself that has been a bit tough at times. We spoke to the doctor a few times in the last few months as to our game plan.

Coby is now currently dosing with 8 peanuts every day together with the peanut powder. Ever since his big reaction in Montana we started the powder back at nearly square one and were slowly building him back up. (Before his anaphylactic reaction he was dosing with 12 peanuts for 2 days followed by 4 teaspoons of powder on the 3rd day.)

We were trying to build him up by just a quarter of a teaspoon of powder each week. And it is so strange even that has been giving us issues at times. He has had quite a few reactions as we tried to build him back up and in just the last two weeks he has had four more reactions!
Twice when we tried to go from 1 1/2 teaspoons to the 1 3/4 teaspoons he had issues. Once we just needed Benadryl to correct it and once we needed Benadryl and steroids.

When we tried to pull him up to the 2 teaspoon level a few days ago he again reacted. He needed Benadryl and steroids and so we brought him back down to 1 3/4 teaspoon.
Then last night again still at the 1 3/4 teaspoon level he reacted. Benadryl was enough to stop the hives this time.
Each time I try to figure out if there could be a reason. Last night at the two hour post dose time he was fine. 5 minutes later he ran across the living room. 10 minutes later he said he was itchy and boom there were hives. Maybe even that 10 foot dash at the 2 hour mark was too much exercise too soon? (Even though most people only need a 2 hour rest period, Coby seems to have had reactions even 6-7 hours post dosing...)

The good news about this is for the first time since this whole OIT thing began Coby began telling us himself when he felt itchy. He never did that before. We would just randomly lift his shirt to find bloodied scratch marks and hives all over. Now all of a sudden he began telling us as soon as it began which is why sometimes now Benadryl was enough to stop the spreading.

I am VERY grateful that he finally learned to tell us when a reaction is beginning.

The doctor told us he would like Coby to get up to the 2 tsp level of the powder and that is where we still stop. That level is not enough for him to free eat peanut butter products (which he has no interest in doing) but it will be enough to protect him from all cross contamination and 'may contains' of peanut butter products. The 8 peanuts he continues to eat daily is enough for him to free eat any peanut products.

Oh and get this... one time during dosing Coby actually asked me to give him another six peanuts!!! My jaw hit the floor.

So that day he had 14 peanuts at once. He said, "I think I'm starting to like the taste of the peanuts mixed in yogurt." Though, he hasn't asked for extra peanuts since then.

It is actually ironic that we are needing to get him up to the two teaspoon level of powder now. The reason we need to get him up there.... is so in one month time we can drop him back to the one teaspoon level of powder without fearing the one teaspoon will bring him a reaction. He doesn't know it, but we are going back to Disney in January. The reason he doesn't suspect it is because he knows since we went on a flying vacation this past summer which we never do, we can't go on a flying vacation this winter. Plus, Mikey's senior class trip in May is to Florida and so we are not going to have Mikey go twice in four months. (Yeah right!)

The doctor wants Coby dosing each morning in Disney with 8 peanuts and half the powder level. He said as long as Coby's body is used to the 2 tsp for a few weeks before going, he shouldn't have a reaction to the half level, though we can never know for sure. After Disney we'd again have to build him back up to the 2 tsp level. And then he wants to see us back in his office in February.
I'm a bit traumatized about dosing with powder on vacation after what had happened in Montana with dosing him with the powder.
The last two times we went to Disney we've also had dosing issues (and this was before we began adding the powder to the mix)
 Two years ago in Disney, just three months into OIT Coby spiked a fever for a few days which had us paging the doctor several times to figure out how to dose him and to try to keep his fever down Thank G-d that only lasted a couple of days.
Last year in Disney on our day of arrival Coby had a reaction to dosing several hours post dose.

And then this past summer Coby's reaction to dosing on vacation ended up with us needing to EpiPen him twice and a stay at the hospital.

ARGH this powder thing is no joke.

Praying his body re-acclimates to the powder and Disney goes off without a hitch. I am so excited because for the first time in SIX years--- all 5 of us will be going together, Josh who hasn't been there with us since he was a junior in high school, will be joining us for the first few days, before he starts his final semester at college. It also will be bitter-sweet though since it is likely Josh's last trip with us and very possibly Mikey's as well before he goes off to either Israel for the year or college.

Cannot wait to go though. Coby thinks that instead of February that he has his allergist appointment early the afternoon when we are really going to Orlando. We will pick him up from school early to put on his latest OIT shirt I bought him. (for those of you who don't know, every single week during the OIT process he had a special OIT shirt for each updose--- from the peanuts gang, to 'courageous' to 'level up' to 'oit graduation' to '24 peanuts challenge accepted.' This time though it has nothing to do with OIT it simply has Mickey Mouse hands pointing to him that says "THIS KID IS GOING TO DISNEY!" )

Soooo need these dosing reactions to stop though and for us to have a smooth ride this trip. After what we've been through with our last few vacations, I think we've earned it.

Fingers Crossed!

TOUGH FEW WEEKS OF OIT

  The last few weeks have been pretty tough in our world of maintenance.

Our rough patch began when he had his anaphylactic reaction that required two epis and landed him in the hospital in Montana (this was the topic of my last blog post). Everytime I stop to think about that night I get chills and cannot believe that really happened.

Due to that reaction our doctor lowered his powder dose waaaaay down to 1/16th of what it was and built him back up to just 1/4 of his total powder dose. (one tsp powder in addition to the  9 peanuts) That should have been easy peasy right? After all most days when he did the full 4 teaspoons of powder he was fine, so how tough will a quarter of that dose be?

Erev Rosh Hashannah we were on our way to Brooklyn. Traveling in the rain through awful traffic. I already am not a big fan of Erev Rosh Hashannah--- when we are about to utter the words 'who will live, who will die,'; realizing that our fate for the next year is about to be decided.
Erev Rosh Hashannah 2001 was the last time I saw the twin towers standing.
Erev Rosh Hashannah 2007 was the day of my high risk pregnancy appointment. I had one of my sonograms and I got to see that beautifully formed baby- head, arms, legs, feet... but he wasn't moving and I was informed that despite its 'perfection' and despite having heard the heart-beat just days earlier, he was now dead inside of me.  (third one in a row) I would have to carry it for several days through Rosh Hashannah before I could have that D&C. I was a human coffin that Rosh Hashannah.
So nope, not a big fan of Erev Rosh Hashannah---(sorry G-d).

This past erev Rosh Hashannah I decided to dose Coby early so we would have several hours at home before having to get in the car and drive to Brooklyn. I didn't want to risk a reaction and have another bad Erev Rosh Hashannah. He dosed early. 3 hours later we were ready to leave. About 20 minutes into the journey Coby started coughing in the back seat. I didn't think much of it but called back to Josh & Mikey, "Boys, please lift his shirt and tell me if he has hives?"
A second later they responded, "He does."
"Haha, you're joking right?"
I turned around and his entire torso was covered in hives. AND he was coughing.
I started shaking.
Again?
Now?

We pulled over to the side of the highway, in the rain, popped our trunk and started frantically searching our suitcases for his packed benadryl and steroids (I had the epi in the car). I jumped in the back seat and gave him both the benadryl and steroids. Josh went into the passenger seat and Yitz continued driving while I sat next to Coby who started scratching at his eyes and his nose and his ear was red.

I was becoming frantic. This was becoming reminiscent of what had happened just a couple of weeks earlier in Montana (the hives in Montana were huger than the ones he had at this point, but the coughing together with the hives were very scary.)

Was I going to have to actually epi him? Here? In a car? In the pouring rain? Trapped in traffic?
 Where even is the nearest hospital to where we were?

Thank G-d, unlike in Montana where his coughing worsened, his throat was hurting and he couldn't speak normally, now his coughing stopped.
He still complained about an itchy eye and the hives had not started to fade, but once his throat was clear I was much calmer. Eventually his itchiness went away and the hives began to fade. I continued to observe him because an allergic reaction can come back and be even worse.

Sitting next to Coby on the way to Brooklyn

I slept with him in my room.

The next two days he dosed at his regular time and was completely fine.

The following day I decided to dose him at noon which would give us NINE hours before having to get back in the car. Again, he was completely fine.

The following day we were watching tv 3 hours after dosing & I noticed Coby scratching himself. We lifted his shirt and AGAIN hives all over.

What the hell was happening????

We gave him benadryl and steroids and paged the doctor.

The doctor told us we again need to go back to square one on the powder. Have him on 1/4 tsp for several days, then have him on half a teaspoon for several days and then call him. HOW FRUSTRATING!!! Earlier in the year we had spent several months building his powder up to his full dose of 4 teaspoons and now we were having trouble at just 1 teaspoon?

"Why is this happening?"
"We don't know. We don't have all the answers. OIT works until it doesn't."

OIT WORKS UNTIL IT DOESN'T?
WHAT THE HELL???

I know the doctor simply means that they don't have all the answers as to why some people sail through maintenance with no issues, others can be fine for months and then may hit bumps.  Or why some barely need a rest period at all while for others a 4 hour rest period doesn't seem to be enough. They just don't have all the answers.

But his words continue to haunt me.

In just two weeks time Coby had a very serious reaction and then the start of what could have been a serious reaction and then a reaction of widespread hives?! (And 2 of those times it was at the one teaspoon dose, why?!!!)

WHAT AM I DOING THIS FOR?

I'm not going to lie. I have a lot of mommy's guilt. After all in a large way Coby had his anaphylactic reaction because of me. I was trying to avoid a bad reaction and time was running out in which I could dose him 'safely' (so I thought), so I shoved it in his mouth on the side of a highway (if you are confused about this, then just read my last post), and those conditions ended up CAUSING the exact thing I was trying to avoid. That which I feared I created. Way to go me.

Cue to the  memory of me feeding him two goobers at age 2 and a half (not then knowing he was allergic) and him having such a bad reaction that his doctor still to this day tells me, "I didn't think he'd make it through the night."

Great job mama.

Each day I am purposely feeding him his poison and for what?

Maybe if we never did OIT he would have been fine and have had NO reactions these past two years. Instead he ended up having several. (most of them just hives).

Sure if we didn't OIT, it would continue to mean a life of exclusion, less travel, no celebrations with family, no birthday parties, no playdates, no restaurants, back to reading labels and his life of NO NO NO NO NO but still....

...after the couple of weeks we had I can't help but beat myself up about this whole OIT thing.

And then this past week I about read three different cases of severe allergy food bullying, which unfortunately is not that uncommon (1 out of 3 children with allergies will be bullied).
1. ELEMENTARY school kids smeared peanut butter all over the 'peanut free' table in the lunchroom. ELEMENTARY SCHOOL KIDS!

2. Peanut butter was smeared on the allergic boy's items and caused him to have a reaction

3. The most heart-breaking one- a 13 year old was chased down by a kid with a piece of cheese and said kid shoved the piece of cheese down the boy's shirt. The boy DIED. Yes, DIED.

These all reminded me of some of the most important reasons why we chose to do OIT. While at times the hours following his dosing can be scary, he no longer has to fear the outside world. He is 100% included in all activities, can do whatever he wants, can eat whatever he wants, can go where-ever he wants. He does not have to fear one wrong bite. He does not have to fear those bullies having the power to terrorize and ultimately kill him.

Yesterday he came home from school all excited, "Mom, my principal said there may be a 5th grade Shabbaton- and I can go!!!!" Yep, he did OIT he gets to go!

I am trying to ignore the little voice in my head that is telling me, 'if he goes, he will have to skip dosing 2 days in a row, so what will happen that 3rd day when he goes back to dosing.' I know our doctor will walk us through it and Coby will have a fantastic time.

And with the holidays once again upon us, Coby gets to go to shul and eat whatever is served at the kiddush. He gets to go on the sukkah hop and eat whatever he wants there. He gets to go to shul on Simchat Torah and collect and eat whatever chocolates and candies he wants. We don't have to fear his safety on the holidays anymore.

I am trying to remind myself of all that he has gained from doing OIT and shut up that voice that at times beats me up for it.

We are now back up at half a teaspoon of powder until Wednesday when we call the doctor as to how to proceed. I'm hoping for a smoother ride in the coming weeks and months than the last few weeks have been. Honestly, while I know he is now safe out in the real world, it breaks my heart that it is now with me he may not be safe since it is I who doses him each day.

I am very thankful that although this momma's guilt has been weighing heavily on me lately that  Coby does not fear the act of dosing AT ALL nor does he fear a reaction despite what has happened lately. All he sees are the positives that came from it and all that he has gained from it. His cup is more than half full. His cup overflows!

I need to take a lesson from my son.

"It's not a matter of "IF" but "WHEN". First time we needed to epipen (twice) since his diagnosis

We just got back from an amazing vacation out West. Shortly before leaving for vacation, Coby had his one year post OIT graduation check up. We were stoked to find out his peanut numbers in his blood test started to fall! One of them fell 33% and the other one fell 50%. How exciting! The numbers still showed him to be in a severe class for allergy as well as a significant risk for anaphylaxis, but we were still so excited to see those numbers begin to fall!

We flew Jet-blue and other than my own fear of flying, I had no fears about Coby having a touch or airborne reaction en route.

Colorado bound

We had no need to read any labels and Coby got ice-cream several times during our trip.

Yummy ice-cream!

He was able to eat at each hotel breakfast with no worries.

Dosing was simple most of our trip. We simply dosed him in the morning before he had his rest period in the long car ride. On the day that was just too action packed we simply skipped dosing since the doctor said when needed in maintenance we can skip once a week, so that we did.

And then came Friday, his second powder dose of vacation. We didn't dose him in the morning since we knew he'd be hot and sweaty from hiking Yellowstone.

Grand Canyon of Yellowstone

The plan was to dose him when we got to the hotel late that afternoon since he'd have several hours of rest with shabbos coming. It was supposed to be a non-issue.

...but instead we had a tire blow out.

We had to empty all our luggage all over the side of the road to get the spare out.
We had to wait a long time for the guy to get there to put our spare on.
We no longer knew if we'd even get to the hotel in time for shabbos, let alone have time to unpack and buy food.

We also knew we couldn't dose Coby with powder past 6PM because the later in the day you dose, the more of a chance of reaction and especially with powder, his reactions tend to be delayed by several hours.
We would have skipped dosing completely that day had we not already skipped Wednesday.
Hind-sight...
We no longer could wait until getting to the hotel to dose Coby.

So Coby carbed up, and got ready to dose in some field in the middle of Nowheresville, Montana.

I'm not happy about this...

Everyone was extremely stressed already.

We couldn't do our breathing exercises or completely calm down the way we usually do before powdering. Before we started to dose he already said his stomach hurt (but that commonly happens before he begins to dose with the dreaded powder.)

I tried mixing the powder (much of it landed on my pants) into two travel applesauce packs (instead of dumping the applesauce into a bowl and really blending the powder into the applesauce) and began to dose him.

It was awful. Coby was gagging it down saying it was making him nauseaus and his stomach hurt. We chalked that up to his hatred of powder, since that has happened before.

dosing

He squeezed Josh's hand as I scooped him spoonful after spoonful of the dreaded peanut powder. He guzzled down water between bites.

Coby was so happy when he was finished. The guy finished changing our tire and miraculously we made it to our hotel in time, Yitz shopped while the boys cooked and I unpacked. We made it in time for shabbos.

We made kiddush.

It was now over two hours past dosing, so I lifted Coby's shirt to check for hives same as I usually do. 

He felt quite bumpy, so we brought him into the bathroom light.

There were big hives all over his torso.

We decided we didn't need to page the doctor and violate shabbos (yet) since we knew what to do. In fact I wasn't even too nervous at that time even though the hives were bigger than any we've seen in years. We still thought we had it under control.

We gave him benadryl and steroids.

A few minutes later he started coughing. 

His nose was running. 

His cheeks were red.

His ear was red.

The hives were spreading down his legs.

Coby started saying his throat was hurting.

Shabbos fell out the window as Yitz attempted to page the doctor.

Our call kept dropping. The name "Natalie" began echoing in the back of my mind.

Natalie, Natalie, Natalie.

Natalie the 13 year old girl who took one wrong bite,  delayed her epipen by 20 minutes, then had 3 injected but still died.

"My throat hurts."

As Coby spoke, we realized how 'tight' his voice sounded. I remember reading that 'tight voice' is a sign that the throat is closing.

"Yitz, I think this is it. I think we need to do it."

Josh and Mikey held Coby's hands  as I Auvi-qd him for the very first time since his diagnosis.

He screamed in pain. I think I panicked and pulled it out before I was supposed to. His leg was bleeding a little, he was crying.

"What do we do now? Do we try to page doctor? Do we wait?"

Yitz tried again to call dr. Call didn't work. This never happened before.

"I think we have to go."

"To the hospital?"

"Yes."

"Do we call 911? Where are we even? In some hotel in Montana, how will they find our room? Will they get here in time? Is this really happening?"

We WAZED and realized we were just a half mile from the hospital. I grabbed Coby's remaining epipens and we ran to the car, both Coby and I in pajamas.

"I'm going to the hospital? Mom, I'm scared. I'm so scared."

In the car Coby was still saying his throat hurt. He kept coughing. He wasn't improving. I  had read that if in 5 minutes first epipen isn't working OR if you're not at the hospital within 20 minutes to epi again.

So as Yitz was racing to the hospital, I opened up the next epipen and jabbed him again, this time through his clothes (which is allowed) on the leg closest to mine (not thinking at the time, that it was the same spot I had previously jabbed him and was already black and blue.)

Coby screamed. I never heard a sound like that come out of Coby's mouth before. He began sobbing.

We pulled up to the front of the hospital. I grabbed Coby and ran him into the ER as Yitz went to park the car.

Thank G-d the second epipen worked and within moments his throat was better, he stopped coughing and the hives began disappearing.

In the ER we were able to get through to our OIT doctor who helped guide us through the night and told us we were absolutely correct in epipenning Coby. She called us back several times to make sure he was okay and to remind us not to leave the hospital for at least four hours since he was at risk for a biphasic reaction.

At the hospital, they gave him more meds, hooked him up to a heart monitor and tracked his breathing, oxygen, blood pressure and pulse for the next four hours. We were instructed to keep medicating him with benadryl and orapred for the next 24 hours.

We violated shabbos when we needed to (like when we pushed the button to page the nurse when his monitors were beeping about his blood pressure being too low), but kept shabbos the best way we could. For example- we didn't watch the tv that was in the room- but instead stared at Coby and the monitors for the next 4 hours.

When they discharged him we drove back to the hotel. We couldn't walk the half mile with a spent Coby carrying our bag of stuff in a town at one in the morning not knowing where we were. We also knew we had to get Coby back to the hotel and be able to reassure Mikey and Josh that Coby is okay. We left his traumatized brothers at the hotel. I so wanted to pick up the phone and call their cell to reassure them, but they had told me they wouldn't pick up their phone on shabbos since it wasn't a necessity for THEM to do so. So I HAD to get back to them.

So we drove. Once we were back in the hotel room, Shabbos began again.

Even though we had to violate shabbos in many ways--- phone calls, carrying, driving, signatures, paging nurses, we did our best not to do 'extras'. In fact even though we did picked up the phone to speak to our doctor, I did not use that very phone to take a single picture of the entire ordeal (even though I document EVERYTHING).

Instead once shabbos was over, I took a picture of his hospital bracelets and the used AUVI Q and Epipen.

Everytime I think back to that night, I cannot believe it actually happened.

Just goes to remind us that OIT is NOT the cure. OIT makes him safe from the real world. No more reading labels, wrong bites cannot kill him. No more airborne or touch reactions...

BUT the dosing hours are still risky. If he doesn't dose in ideal conditions and follow the restrictions (no fever, baths, or exercise for several hours), reactions can still occur.

Until that night, we were lucky enough that his reactions (mostly to the powder) were only small hives.

We had our wake up call Friday night.

The doctor had us half dose him with peanuts on Shabbos and back to the full dose of 12 peanuts on Sunday. We all agreed though, that we didn't want to risk powdering him again during travel. He is able to handle the 12 peanuts mid travel.

Powder is a whole other level though.

As I finish typing up this blog 5 days have passed since that night and since his last powder dose. We are waiting on the doctor's call to tell us how to powder him up today and build back up to his original dose.

"It's not a matter of if, but when." Thank G-d our 'when' had a happy ending. Yesterday I read about one whose did not.

The following day besides some residual effects, Coby was back to his normal self and able to enjoy our amazing "Wild West" vacation. In the airport on the day we left, we saw:

ASS KICKIN' PEANUTS

Ass kickin' peanuts you say? Well they may have won the last battle, but they did not win the war!

EDITED TO ADD: Just spoke to Dr. Selter who said maintenance dose for most patients is now 8 peanuts instead of 12, but with Coby might as well stay at 12 b/c his body needs extra protection. He wants him to have SOME powder protection but the full four teaspoons is too much for him. If Coby reacts with hives if conditions are not COMPLETELY ideal is too much and Friday was beyond too much. For the next several days he is going to build up to ONE teaspoon of powder, starting today at half a teaspoon. Today 10 and a half peanuts and half a teaspoon powder for several days, then 3/4 tsp powder and 9 and a half peanuts several days. Then 9 peanuts and one teaspoon every day possibly indefinitely but we will get back in touch about that.

THE CONUNDRUM OF FREEDOM

Well, what does freedom mean to a 9 year old?

- It means having your mom basically FORCE you to get ice-cream at every ice-cream truck we happen to pass.

When scootering

When at an Israel festival

Even in front of the Washington monument

-It also means on a day like Father's Day, ice- cream becomes the law!

-It means being able to ride on a real school-bus with his school for the first time ever with zero worries about an airborne or touch reaction and being able to march in the Israel parade.

-It means being FORCED to eat a cookie that was being handed out. He declared it as, "soooooo good!" 

-It means stopping by the kosher food truck to get something- anything, just because we could.
Coby was sure he was going to HATE it--- after all what the heck is Shakshuka?  He ended up devouring it!

 

-It means being able to go off to camp for the first time ever without having to wear the annoying epibelt around his waist.
Instead he is able to hand off his epipens to his counselor to carry around all day and get it back at the end of the day. This is the first summer his waist can actually breathe!!!

off to camp! Counselor (to a different division) and camper

-It means being able to hang out with family at a barbecue and eat whatever he likes without any concern at all about the food's ingredients. 

- It means buying way too much Entenmann's.

-It means being able to go away for the weekend eating whatever.

Pikesville, Maryland (you may think how could
 pizza  be unsafe... but there are many
 times it is unsafe- in fact just last week I read about
a couple of kids who had reactions
to what they thought would be 'safe' pizza.)

-It means going out to eat at random restaurants without calling in advance to see if it's safe, nor talking to the staff there to confirm that there is absolutely no chance of cross- contamination.

Teaneck, NJ

Elizabeth, NJ

Freedom is wonderful.
Freedom is a blessing.
But freedom can also be confusing.
Random reactions still do occur.
Some that are less scary like just a few bumps that we have (sorta) learned to navigate on our own.

Since Coby hates dosing with the pb powder, we tried having him dosing every 3-4 days with it, instead of just every 3. And at times it seemed to be working out- but other times he would end up with small hives all over as in the pic above. And so we went back to dosing with it every 3 days to help avoid those minor reactions.

And other times it can be more scary. For example, last week after Coby dosed- we waited a full two hours before leaving the house. It was quite warm outside. He walked to our car. Then walked one block to our destination. He was barely outside and was walking at a normal pace and it was after his 2 hour rest period. Yet--- IT began.  I heard him clearing his throat a few times. Right away, in that initial moment of that throat clearing sound- I just KNEW...
Then he began rubbing at his eyes.
Then I noticed a couple of bumps on his ear.  One inside and one on the top.

A bunch of bumps on the back of his neck.
He started wiping at his nose and being all stuffy and I noticed he had small hives all over his torso.

A multi system reaction...
Anaphylaxis?
We jetted home with me sitting in the back seat with Coby to keep an eye on him and paged the doctor. The dr. had us treat him with benadryl followed by steroids and keep him up for quite a bit after his bedtime to keep watch. (The doctor told us he is concerned that Coby randomly still has problems with the powder. Coby has his next appointment for more blood and skin testing in a bit over a month and to discuss all with the doctor.) Thank G-d it resolved itself. But what the heck? Was the car not cooled off enough? Why would just a couple of minutes in the heat outside his 2 hour rest period do this? Was it because it was heat plus a powder dosing day? Should I have even waited and called the doctor or should I have just epiid him- after all it was a multi system reaction. I didn't epi him and it worked out, but I don't know- isn't the rule multi system equals epi--- I remain confused. Despite it all working out that evening, did I do it all wrong?

Stressful times do occur. And at times it can be a balancing act together with a difficult math equation. After all, it is summer and we want to be able to go out and enjoy and be free--- but the timing of his dosing made more complicated with wanting to go out and having to deal with the heat is stressful. Just yesterday we wanted to go see a show but the timing wasn't working out. I just couldn't figure out how to make it work. He got home from camp 4:30 still needing to shower. Then he would need to wait 45 minutes before dosing and that would have meant we would be heading out less than an hour after dosing, and while it was a nice day was it still too warm? Unlike the other day when he was outside for just a couple of minutes, this time he would be outside for hours.
So what did we end up doing?
We exercised our rare, 'skip your dosing today' card, and did just that. We didn't dose him at all. We went to the show. He was able to run around like a normal kid before it began. We didn't have to worry about a reaction. We were able to relax and enjoy.

Fiddler on the Roof

And today he dosed again with the full amount (and it is a powder day).

BUT.... we will have this issue all over again tomorrow.
we want to get in one set of fireworks and music in before the 3 weeks begin--- and that is tomorrow. I cannot again exercise his 'skip today's dosing' card just 2 days after using it, (Plus in a couple of weeks we will have to do that again when he goes on his camp overnight) so I am a bit stressed about what will happen tomorrow. So far all we figured out is we will pick him up from camp a half hour earlier than he usually leaves to buy us some time. We should have about 2 and a half hours at home before needing to leave for the music and fireworks. BUT we can't allow Coby to run around with a ball and frisbee like he usually did. Even though it will be past his 2 hour mark, I'm a bit traumatized from what happened last week--- that the warmth plus exercise plus the dosing may be too much for his body to handle.

Sometimes maintenance can be quite the balancing act.
So tomorrow we will (try to) enjoy, but will also be ready to pounce just in case...

I do know one thing for sure though--- when we see that ice-cream truck, Coby will just HAVE TO get some. It's not like we even have a choice.
After all, it's the post OIT law!

MAGIC

Life after OIT...
Truly mindblowing.
What else can I say?
It's just the every day stuff most other people may take for granted.
But all this every day stuff continues to blow my mind.

So what new things have happened since my last blog post after Pesach, so just one month ago...

1. Coby was able to go to his very first every sleepover party.

2. Free cone day at Ben & Jerry's--- yes please!

3. Mikey comes home with a spare milk shake from Lazy Bean. Yes it's past Coby's bedtime and he already brushed, but he never had one before, so how could we say no?

4. He tried cracker Jacks for the first time! Just because he could.

Did he like it? Well first he tried the caramel popcorn and:

examine

smell

nope--- back in the bag it goes...

 Then I gave him a honey roasted peanut from it... and he went charging up the stairs to spew it in the garbage, and then he growled at me. It was actually hilarious- but the video is too large for me to paste here.
























5. He was able to have ice-cream during his school's Yom Haatzmaut celebration! The school was kind enough to call beforehand and triple check that it's really okay, and yes it is! Coby came home so excited about that "DELICIOUS BLUE AND WHITE ICE-CREAM!!!"

6. Shul kiddushes- eat whatever you'd like Coby.

7. Lucky Rolls--- the first kosher Thai ice-cream in America.

8. Lag Baomer barbecue, followed by Soulfarm concert, followed by roasting marshmallows. We didn't even bother to find out if there was any chance of cross contamination on the grill. We didn't read the labels on the bun bags. We didn't ask where the knishes and salads came from. No concerns at all. And we didn't need to ask to see the label of the marshmallows either.

9. His friend slept over for shabbos and brought us cookies from Trader Joe's. May it contain peanuts? Who cares! Coby inhaled that cookie!

And then there's all the regular every day stuff. It is so easy to grocery shop for whatever we want. It no longer takes 3 hours to shop since we don't have to read every last teensy tinsey word on every last label. It truly is amazing!

Truth be told we still do have occasional kinks we need to work out. For example, we tried to dose Coby with pb2 powder just twice a week instead of every 3rd day and the 4 day gaps just weren't working. He ended up with small hives over a good chunk of his body,

so for now we'll take it back to every 3 days. Something that is fairly simple to do and his body is able to tolerate.

We also had to remind him and his soccer loving friend yesterday that they had to stop playing soccer an hour before Coby dosed until the end of Shabbos which was a bit of a bummer to him, but they found plenty of other low key games to play. Again, something that is fairly simple to do in exchange for these rewards that just keep on giving.

We knew going in that there'd be some small prices to pay in exchange for OIT magic, but as we all know

What can I say?

In my eyes OIT truly is magic.