DONUTS AND KIT KATS!!!!!

Usually I only post about up-doses, anxiety, set-backs and reactions. Today it is all about BLISS.

After Coby's successful up-dose to 4 peanuts yesterday, he was given clearance to eat things 'made in a facility with peanuts'! 

He is safer than he ever has been before. He is now a bit past the 'bite-proof' level (which means one wrong bite shouldn't be TOO bad) and now he is at the level where some food freedom has begun! 

We brought three boxes of Entenmann's into the house

as well as a pack of Kit-Kats. We didn't think he would actually like kit-kats, but we needed to actually see him eat something that said "made in a facility with peanuts". (Not all Entenmann's say that, we were just warned to stay away from all Entenmann's---- until now!!!) What a change that was--- reading labels IN SEARCH OF the following words...

"

This afternoon Coby had his very first Entenmann's crumb-top donut and it exceeded all expectations! 

And some stills... 

"I HAVE BEEN WAITING MY WHOLE LIFE FOR THIS!"

It was just amazing watching him.

We also insisted he try a kit-kat too... because--- well, just because he could!

"I'm not too sure about this one...

1st bite ever of kit kat

AND HE HATED IT!!! (which we pretty much expected since he does not like chocolate)

It's okay that he didn't like it, the point is he's ALLOWED to eat it!!!! 

That is WILD!!!!!

So now in our house we have peanut m & ms, peanut butter, kit kats, entenmanns brownie little bites, entenmann's chocolate covered donuts and entenmann's crumb top donuts! 

 Must. Exercise. Self. Control.

I never in a million years thought the day would come where these items would be allowed back into our home.

I must be dreaming.

Can someone pinch me please?

4 PEANUTS!!! CLEARED FOR "MADE IN THE FACILITY WITH PEANUTS"- BOOYAH!!!

Well if you look at the above meme carefully- you will see that today Coby up-dosed to 4 peanuts. If you have been following my blog you will also know that he was supposed to up-dose to 4 and a half peanuts today.

What happened?

About to up-dose to 4.5 peanuts.... or so he thought

When we got to the office we discussed the reaction he had this week and she watched the video I took of him during his reaction and she decided it would be best to up-dose him by only half a peanut today and play it safe.

She actually told me that they have been hearing about several reactions at the beginning of the week which coincided with the heat-wave and people are realizing they have to take heat-waves a lot more seriously in OIT. (And I'm realizing that a call to his camp may be in order.) She went on to say that it's also possible that when the peanuts came back up his throat it gave his throat a small cut which can contribute to a reaction. (Studies show for example, that if a child loses a tooth and then doses, the allergen can straight into the exposed gum and blood stream before being digested, making a reaction more likely.)

It was actually a bit chaotic today at the office too. There are five people in the room including Coby and two of them were having reactions when we got there. One's face was blowing up and they were discussing meds and shots and IVs and how it isn't safe for her to go on her vacation now, another one was discussing something about the hospital.... I don't know.... It was a whole bunch of controlled chaos- there were a lot of doctors and nurses in the room all at the same time trying to take care of everyone.

I was kind of trying to tuck myself into an emotional cocoon and pretend nothing was going on so I wouldn't end up having a panic attack myself.

I hope everyone is doing okay...

Anyway back to the 'disappointment' of being told we cannot up-dose to 4.5 and can only up-dose by half a peanut.

Guess what?

I was NOT disappointed!!!!

Why is that?

Truth be told, I was nervous about doing a full peanut up-dose just days after Coby's reaction.
Going to 4 peanuts instead of 4.5 also does NOT add a week to his journey (it would just mean he's back to the original protocol of going from 8 to 10 peanuts at that week instead of 8.5 to 10)
AND
4 peanuts is all we need to have clearance for 'made in a facility with peanuts!'

So all was good in my eyes!!!!! (Well for a bit of time, that is... keep reading....)

She did say that while Coby was getting clearance to eat 'made in facility' items, he would not be getting any more clearances until after graduation. He still cannot go into a not nut free bakery (bye bye dunkin donuts). He still cannot eat at an ice-cream store.

I had thought that at 6 peanuts he was going to get more clearance, but recent studies showed that would not be a safe enough point.

Oh well. At least all the 'made in facility' items would be open to him so I wasn't going to let anything get me down (or so I thought) as long as he got past THIS point of 4 peanuts.

After today we would just be chugging along until his graduation date.

About to eat 4 peanuts

Still not a fan of the taste, but always the trooper

The hour passed reasonably well. Towards the end we noticed that his cheeks were flushed and he had a couple of patchy white marks within the 'flush' of his cheeks.

It was not 'raised'. It was not hives. It is still okay (for now), but we are not going to let Coby have his Entenmann's tonight because as we all know he tends to get delayed reactions. He is still on watch throughout the night. If all goes well tonight, then he will be able to eat that very first donut tomorrow afternoon!

BOOYA!!!!

Before leaving we discussed one more issue. Coby's day-camp which has two trips a week also has one overnight to Club-Getaway. Jessi told us Coby would completely skip dosing during the overnight and go back to his full dose the following day and it SHOULD be okay. If all goes well until then, at that point Coby would be at 8 peanuts and supposed to up-dose to 10 peanuts that Thursday.
I asked if he'd still be able to up-dose if he missed one of the 7 doses of the week. She said in reality the kids are supposed to have SEVEN successful doses before up-dosing, but they have done up-dosed kids if they only had 6 of their 7. She said as long as the overnight/the missing of the dose is not the day before his up-dose appointment (and it is not- it's two days before)- he should be okay to up-dose if it otherwise goes smoothly.
Then she added, "But in Coby's case, we may put an extra step in there and add another level to his up-dose schedule."
(Which would mean instead of going 8 to10; they'd go 8 to 9 to 10)
And THAT would push off his graduation by yet another week.

ARGH!

On the one hand it is so frustrating to lose an entire week because of a single overnight and I could keep him home. And selfishly I would love to keep him home even if he weren't doing OIT. (Last year when he went, it was the hardest night of the year for me. Yes when I was 9 I was already going to sleep-away camp... but he's my baby and when he's not with me at night I feel like a shell of myself. It tore my heart out. It was harder for me to let go of him for the single night than it was when the older boys went to sleep-away for the entire month.)
But on the other hand, I would never ask him to skip the overnight, even to buy the week back. If he wants to go, he NEEDS to go.
And who knows, maybe he will still be able to jump from 8 to 10 as originally thought (though that jump is HUGE--- that would be the first 2 full peanut jump...but at that point the body needs to handle it; since after 10 it jumps to 12 which is graduation and a month later it jumps from 12 to 24
)
But yes I will sacrifice the week in order for him to be able to go.

Frustrating as it may be...
We  can not seem to get past this mark of having 7 UP-DOSES left to go. For the last couple weeks I thought, "Okay seven up-doses left, after today, we'll be at six," but something keeps on happening. that keeps us at 7. He has to down-dose or he gets sick and can't up-dose, or they add another level/week to his dosing schedule.
So I went in today thinking, 'after today we'll be down to six!', but once again I left realizing, 'nope- probably back up at 7.'

Yet again....

And if we lose another week, and if once again we really are back up at '7 more up-doses left'...
...he will no longer graduate before turning 9.
He will not be getting that ice-cream cake for his 9th birthday.
He will no longer have his final food challenge before 4th grade begins.

AND if he gets delayed even one more time after this, I would have to postpone his graduation party from mid August to some time in September which would be a real headache for some people, including his own brother.

Sigh.

It's like that game of 'red light green light'.

Every time I think 'this time we'll do it, this time we'll get to that goal...' we get 'caught' and get sent back to the beginning. Obviously I know we are not going all the way back to the beginning but still, it's just aggravating that  we just can't seem to get past this point of "SEVEN MORE TO GO."

And really, I just need to get out of my own head and remember progress is progress no matter how slow you go....

And I need to celebrate the victory he may have accomplished at today's appointment because if all goes well tonight, he'll be having donuts tomorrow!!!!

So originally this said 4.5, but when she told me it would just be 4, I ripped up a corner off a paper, and ripped shreds of already used tape to tape that white square over the '.5'.

Cup is half full.
Cup is half full.
Cup is half full.

I need to keep telling myself that. I so wish I could see life the way Coby does. Full of excitement and happiness and optimism. No matter what!

He really is my hero.

The other day Coby asked me if he can go on America's Got Talent to..... dose.  Too cute! In my book, his 'talent' does deserve that million dollar win! After all he is taking down the very thing that tried to take him down. How many people can say they could do that? How many people would have the bravery to even try?

Good luck tonight to my AGT winner.

I apologize that I don't have the million dollars to give you bud.

But I know those boxes of donuts that are coming your way is the real windfall to your sweet little 8 year old mind.

DEFYING GRAVITY

Well tomorrow is the up-dose he has been waiting for since beginning his journey back in October.

If tomorrow's updose is successful Coby will be able to eat things 'made in a facility' with peanuts!!!

And that includes.... ENTENMANN'S!!!

Food freedom is finally beginning!!!!!

I still remember him coming home from school one day last year and telling me how his friend had 'mini bites' for a snack and how it looked soooo delicious and he wishes he could eat it. (And yes, of course I went on amazon right away to purchase a mini muffin pan and made him dozens of safe 'mini bites' for him to enjoy, so he wouldn't feel so bad. And yes he loooooved them, and I still make them for him, but it's just not the same thing...)

But after tomorrow, if all goes well, he will be allowed to eat actual mini bites!!!

Is this really happening?

I am so freaking excited for him!!!!!! I mean as a mom, the main reason I'm in it is for his safety, obviously, but I soooo need him to have actual tangible proof that this is working in the way he wants it to. I want to see that smile on his face as he gets to bite into his very first crumb topped donut.... into his very first mini bite...

Because as a kid, he's in it for all the goodies. 

What kid wouldn't be?

Can you imagine being a 2 year old... a 3 year old, 4, 5, 6, 7, 8 year old and being told "NO."

NO ICE CREAM STORES FOR YOU. 

NO DUNKIN DONUTS FOR YOU. 

NO YOU CANT GO TO HIS BIRTHDAY PARTY. 

NO YOU CAN'T BUY ANYTHING FROM THAT ICE CREAM TRUCK. 

YES... YOU CAN GO TO HIS BIRTHDAY PARTY.... BUT YOU CANNOT HAVE A PIECE OF HIS ICE-CREAM CAKE. (I'm not sure which one was worse for him that time.)

NO YOU CAN'T EAT FOOD AT SCHOOL PARTIES THAT DON'T HAVE LABELS.

NO YOU CAN'T EAT THE SNACK A FRIEND OFFERED YOU. 

NO YOU CANNOT EAT THOSE COOKIES AT THE SHUL'S KIDDUSH.

NO YOU CANNOT EAT THOSE THINGS IN OUR SHALACH MANOT.

NO. 

NO. 

NO. 

NO.

Through all these years Coby usually remained his happy optimistic self, but once in a while it really got to him.

Not too long ago he was crumpled up on the floor sobbing about how he couldn't have a lollipop because it 'may contain nuts'. And it was just heartbreaking to witness.

I mean how many NOs can a  kid be expected to handle? At a certain "NO"- it just breaks the camel's back.

But now....

Finally.

FINALLY.

FINALLY.

FINALLY!

Some of those NOs are beginning to morph into YESes.

insert 'hallelujah' music here

It's been a long time coming.

This is the week G-d willing, that Coby will see his efforts beginning to pay off. This is the reason my eight year old, has refused to give up. This is the reason he continues to defy gravity day after day after day.

 

Honestly I am a bit nervous... he did have an issue just two days ago and we will be jumping up by

an entire peanut yet again.

And we sooooooo need this one to work...

It's been 238 days since we began. 

This has been a long time coming.

GO GET 'EM COBY!!!!!!

AND BRING HOME THOSE DONUTS!!!!!

PUNCH BAG

Do you remember that classic punching bag clown toy from your childhood? You know the one that no matter how many times you punched it down, it shot right back up...

Well, that is what it feels like to be us.

Punch after punch after punch.

But no matter how many times those peanuts will knock us down, we are going to get right back up.

The only problem is unlike the clown, we are not made of plastic, so we are starting to feel a bit beat up at this point... but we didn't begin our journey under the misconception thinking it would be easy...

Nothing worthwhile is easy.

I guess it was just our time to be sucker punched.

Again.

Well, we were told that even if you tolerate an up-dose at the doctor's office, you still may experience a reaction a few days later when doing that same dose at home.

Guess we had to click that off our check-list to get the full OIT experience before we get to graduation.

Come on graduation day!!!!

Jessi called us back today, after speaking with Dr. Selter, and Dr. Selter said it IS possible that even though Coby was outdoors over 4 hours before dosing, that the extreme heat could be partially responsible for his reaction. He also agreed that the reaction could also be due to the peanuts coming back up. Instead of having it in his throat just once (going down), it was in his throat two times.... and that being said they believe if we take those two possible contributing factors away that Coby could try this dose again!!!! AND if he can handle the dose he WILL be able to up-dose this thursday.

HUZZAH!!!!

So I need to make sure he eats the peanuts more slowly and carefully drinks his water to rinse out his mouth and throat and we needed to make sure that Coby does not go outside during this heat-wave.

Coby was not happy with us when we told him we'd be calling the school to make sure he did not go outside for recess ("But I want to be with my friends"), but we have to give Coby the greatest chance for success in his journey and he understands that.

(Of course I am already worrying about future heatwaves and dosing in all the years to come but I just gotta pray things will fall into place, and as time marches on his body will get more and more used to his dose and he would no longer need so many restrictions placed upon him. In the meantime I am taking comfort in the fact that Josh will be working as Coby's division head this summer, and while I don't want Coby 'babied' or singled out, Josh can help make sure the kids in general play in the shade, stay hydrated, and perhaps if the heat is too bad, keep them indoors.)

I remain cautiously optimistic that we are back on track. Yeah, we may have flown off course a bit last night,

but hopefully the ride will settle down once again.

Coby should be home in any minute, time to buckle up and give it another go....

AND ANOTHER REACTION

So Coby had some type of reaction today. This type has not happened before and I wonder what caused it...

Coby has been doing soooo well and his 3.5 dose- no issues at all!

And then today happened.

He ate his 3 and a half peanuts. He drank his water.

As he was drinking he swallowed wrong and started coughing and spewed out bits of peanuts. At first I thought he spewed out what he was still chewing but Coby claimed that he had already swallowed all the peanuts but when the water went down wrong he choked and he felt them coming back up.

Little shards of peanut spewed on the floor and on my hand.

At first I felt extremely frustrated... crap! How much did he end up dosing with? Do I try figuring out how to replace that amount? If he ended up dosing with less today and he has full dose tomorrow, will he react?

So I took a picture of the 'spewage' in case the doctor wanted to see how much spewed, and we called the doctor for the first time of the evening. (I also took a picture of the pieces in my hand but that picture was a lot grosser than the one below since it still had saliva on it, so I'm not posting that one here.)

Pieces of peanut on the floor

We asked the doctor, "Do we replace the peanut that he spewed? But I don't know how much he spewed, I don't want to over-dose him so what do we do?"
She said, "As long as the total is less than one peanut, don't replace it. It's fine."

Okay.... so I thought we put the issue to bed and we'd have a very simple two hours of observation since he now had even less peanut in him....

....Coby then said his throat hurt a little bit.

Oooookay....

...but that could be normal--- after all your throat hurts after you vomit a bit....

BUT then I realized he sounded very congested... 

I needed some validation to know I wasn't beginning to fill with paranoia.

Mikey was home and so I called him to me to listen to Coby talk. Mikey also heard the congestion and verified that Coby did sound 100% fine prior to dosing.

Okay--- so it was real. And I wasn't imagining things.

For 15 minutes I kept making Coby talk hoping it would clear up, but it didn't. I took a few videos of him talking  in case Coby would refuse to get on the phone and the doctor wanted to hear what he sounded like. 

I still didn't call the doctor but once I noticed a small mark on his nose and one on his chest and one by his ear I knew I had to call the doctor again. (At this point I also cancelled my PT appointment that was scheduled for this evening because there was no way Coby was going to leave my sight for the rest of the night.)

Small mark on his nose

I called the office and the receptionist put a doctor on the phone right away. She told me, "you need to begin treatment of the reaction," and told me to give him 2 teaspoons of benadryl.

I hemmed and hawed. Benadryl scares me.... and what if it's not enough...

"I'm nervous because he sounds congested, what if..."

"You know what, give him a teaspoon of the steroid too. If anything continues to progress call us back, otherwise we will call you in a half hour."

I really thought she was going to tell me to epi him--- after all his throat hurt, a couple of small marks appeared (though they were not yet hives) and he sounded congested, but I gave him the meds (much to his dismay since he hates the tastes), and we waited.

Coby told me his throat was starting to feel better, but he still sounded very congested.

Jessi called me back and told me to give him another teaspoon of steroid. 

"O-o-kay."

"You sound very hesitant, what's going on?"

"I'm just nervous. The last two times the hives happened hours later, he never had this congestion happen before."

"I really don't think you're at the point of needing to epi him--- if it gets there we'll be there."

"Okay- but then why is this happening? It was going so well."

I started listing off possibilities to her:

*His school had him playing outside for an entire hour in this heat. I know heat can bring on a reaction- but that was 4 hours prior to dosing- could that be it?

Probably not.

*He had a shower a half hour before dosing- but most of it was a cool shower but the first couple of minutes was hot, could that have done it? Though we've been doing a shower a half hour before dosing all along to wash off the pollen from his fuzzy hair. (We knew not to shower him within 2 hours after dosing)

Probably not- but space it by 45 minutes now just in case.

*This time when dosing, I specifically picked out the 3 and a half LARGEST I had and gave him all the big ones, could that have done it?

At this point, big or small shouldn't matter anymore.

Jessi said if things worsen to call her back otherwise she will call again in another half hour.

After that half hour went by, Coby said his throat was feeling mostly better, but he still sounded congested. She had me do a skin check but nothing new had appeared. 

She told me that it really is possible that he choked on the water and when he regurgitated and had the acid come back up that could have caused the throat hurting and the congestion. She also said since the peanuts went down and then came back up that could have caused this type of reaction because his throat had to deal with twice--- both going down and going back up.

She told me it would be such a shame to have to down-dose at this point, since he had been doing great at this level until now and she doesn't want us to lose our momentum. She said she will speak to Dr. Selter to see if we can try 3.5 peanuts again tomorrow. 

She will call us tomorrow to let us know how to dose him and to see if we can still up-dose this Thursday. She asked me if I'm comfortable with possibly trying 3.5 again tomorrow and I told her that I was--- 

---"but I am NOT going to be picking the 3.5 largest peanuts in the bag tomorrow." She said, "But don't pick the smallest ones either!!!!"

She wished me a "better night than how it started off, but if anything new develops like stomach pain or anything do not hesitate to call us. You did the right thing."

Here's hoping... 

The kid is definitely going to sleep in my bed tonight.... Right now he is lying on the couch struggling to stay awake since he has so much 'sleepy meds' in him.

And that still leaves me confused as to what could have caused this today...

Was it the heat?

Is he getting sick and his body is fighting off something else and so his 'allergy bucket' had tipped?

Was his shower too close to dosing?"

Was it me picking out the largest peanuts of the batch I had cracked?

Did a simple choking of the water really domino into all of this?

I'm sooooo confused.

At times this is just too much, you know? I haven't yet fully recovered from his most recent reaction just a couple of weeks back, and now here we go again????

But weare keeping our eyes on the goal and so we will get back up, wipe off our scraped knees and try try again.

...but why does he still sound so congested?????

IF AT FIRST YOU DON'T SUCCEED, TRY TRY AGAIN

Is today the day?

Is today finally the day that Coby will be successful in up-dosing by an entire peanut?

It has not happened yet, but if at first you don't succeed...

Try.

Try.

And try again.

Jessi told us that maybe the reason he reacted last time is due to his being sooooo sensitive. It could be that Coby's body did not yet have enough 'peanut baseline' in his system to handle the full peanut jump.... (or maybe it was due to peanut butter form or perhaps even a touch reaction.... We'll never know for sure.)

Lately OIT seems to be taking forever. (Well today is day 232 after all.) I am kind of comparing this to a pregnancy; since if all continues well, it will also take about 9 months to complete... Well slightly longer than that even, (not including the final 24 peanut challenge). 

The final trimester is when one feels 'enough is enough'. Pregnancy is no longer comfortable. You have to pee a million times a day. It's harder to move. The days seem endless. When is that baby finally going to get here?

I guess in a way, this is also our 'final trimester'.

It seems the further we get down the road, the further away that finish line seems. 

I need to remind myself that he's been to more than two dozen appointments already. He has successfully up-dosed more than FOUR MILLION times his starting dose. 

I need to focus on how far we came and just keep on going...

On the way up to Suffern we listened to the NEWSIES soundtrack and were getting all pumped about seizing the day and conquering those peanuts. 

I'm so gonna do this! Become that legend Coby-bear!

When we got there Coby was so excited to find out that if this week goes well and next week's up-dose goes well, he very well may be able to finally have those so coveted for ENTENMANN'S!!!!

HUZZAH!!!!

She told us that once he gets to 4 peanuts he will be able to eat items that are 'made in a facility with peanuts'! She also said that he cannot have things that say 'may contain peanuts' because research has shown that if a company puts that down on a label, there is a good chance that there is actually a substantial amount of peanut that item 'may contain'. 

So while he is not at that point yet---- we actually may be shopping for Entenmann's in just a few days!  (Entenmann's claim that they do not label for 'made in a facility with tree-nuts', but will label 'made in a facility with peanuts'- if the facility for that item is made in uses peanuts---- so Coby may be just days away from that!!!!)

But one day at a time.

And today Coby up-dosed to 3 and a half peanuts! 

GONNA CRUSH YOU!

Yep, all peanuts in the mouth (I actually read that
when your child doses you need to witness him dosing.
There are kids who try to hide their dose and throw it away,
and then when they dose again they have a serious reaction.)

 I was examining Coby a lot during the hour and making note of any tiny mark I noticed, including a small bump on his thumb, and even a red mark on his back from where he was leaning... yes, I am that paranoid. I think at this point I have earned the right to be...
His voice also sounded a little phlegmy too, but that fixed itself.
I did take comfort in that no marks appeared on his face (as did last time), and he wasn't rubbing at his eye at all (as he did last time.)

When the hour was up and they did the post-check, she also carefully examined his skin to make sure he was okay enough- and he was... But as we all know, Coby tends to have delayed reactions. Jessi told us that she hopes he is over his hump and that tonight will be okay... but if we need her we know where to find her. 

Breathe in.

Breathe out.

Yeah, so I don't yet consider Coby to having passed today's up-dose... if all goes well for the next 12 hours or so then I may begin to believe...

The moment we left the office, literally THE MOMENT--- the door had not even finished closing behind us, Coby said, "I miss her." 

Awwwww.

So now here we are at home hoping for an uneventful night. Coby is actually acting very tired and lying down on the couch which always is a bit concerning, since that is not like him on non up-dose days, but hopefully it's just the regular 'tiredness' of the fight his body is going through after an up-dose and not the 'tiredness' that precedes a reaction.

PLEASE PLEASE PLEASE LET THIS WORK. LET US BE OVER THAT HUMP. LET ME BE ABLE TO BRING HIM TO SHOPRITE THIS WEEKEND AND BUY THOSE ENTENMANN'S DONUTS FOR HIM TO ENJOY IN ONE WEEK'S TIME.....

Keep fighting the good fight Coby. 

Become that legend, just as your shirt says!

In fact, you know what Coby?

You already are:

LEGEN---- 

wait for it. 

DARY!

ALL THE FEELS

Last night I had a bad dream about all this.
I dreamed we were in shul and we happened to look under Coby's shirt and saw that he was covered in hives even though it was nowhere near dosing time. We debated paging the doctor with it being shabbos and 'just hives', but we decided we needed to because we didn't want his reaction to snowball due to our hesitance. Next thing I know Yitz Coby and I are in the car driving to his up-dose appointment with him sitting in his booster seat covered with hives. Jessi meets me in the waiting room and says, 'how are things,' expecting the standard, 'good and how are things by you?', but instead I say, 'bad.' Her eyes widen and she asks, 'where is he?' I said, 'in the car.' She says to quickly bring him in while Dr. Selter says, 'obviously there will be no up-dose today.'
I got so upset about that and say to him that this reaction came out of nowhere, without the dosing and maybe it was just environmental allergies and that he had had nearly 2 weeks of zero issues at the 2.5 level and come on..... why can't he up-dose? I mean, obviously I knew he couldn't up-dose, but I was so flabbergasted as to why this happened out of the blue after so many days of no issues. (IRL that is possible as well.) and I wondered how the hell we'd ever get past this level. Then I woke up.

Sigh, these dreams stick with you.
At least this dream didn't have him going into full blown anaphylaxis- I've had quite a few of those over the years as well.

Maybe one reason I had this dream is because yesterday I learned that in under two months our insurance will no longer be covering epipens. (We have a high deductible, but once we reach it, the epipens had been 100% covered. This year the epipens ate up our deductible so now all appointments are covered- which is good considering I am back at PT three times a week and acupuncture for the next 3 months, and have to see a rheumatologist, neurologist and possibly get more back treatment- so it's nice knowing that those appointments won't cost too much) After August 1st insurance will only be covering a generic epipen.
While I understand that the medicine in both the official epipen and this generic one is the same (I hope), the container/mechanism in which to administer it may be different.
I am soooo worried that if a reaction occurs, in that moment of panic, with shaking hands, as I struggle to hold my child down, that I will screw up. After 6 and a half years of having ingrained into me how to use that epi-pen, what if in the moment of truth, I screw up with the new device?
 Even more worrisome, what if he is in school or in camp when it happens? Will the teenagers or teachers in their moment of panic be able to dig through their brain for whatever training they had and recognize which epinephrine device my child has and remember the correct way to administer that one? That thought is terrifying to me!
(And yes I know he is in OIT to make him safer and 'bite proof' and be able to fully enjoy life, but reactions can still occur in maintenance- sometimes from environmental allergies plus the dose tipping the bucket, sometimes if the child is getting sick- so he will have to continue to carry an epipen.)
I truly don't mind using generics for regular medications---- but this is a life-saving one.
And so I care.
I care A LOT.

... but all MYLAN cares about is having money.

and more money

and even more money

exuberant amounts of money

because the several billion they already have just does not compare to the lives of millions of people.
All that matters to them is that they have another buck to shove in their disgusting sweaty smelly obnoxious pockets.

DISGUST. They disgust me.

And tomorrow we try to up-dose Coby again. And my butterflies have began pounding their wings.

This appointment is scaring the bejeebers out of me. While he will NOT be up-dosing to where we had hoped he would be, and we did lose another week of progress, they will still be trying to up-dose him an entire peanut and get him past the point of his 'significant reaction' (doctor's words) that he had last time. (He reacted at 3, and we will be trying to get him from 2.5 up to 3.5)

That terrifies me!

FEAR

After all he is up-dosing a full peanut higher than what he has been on and it is a HIGHER level than what had brought upon his significant reaction after his last appointment of 3 peanuts (which caused him to down-dose to 2.5). He has not yet been able to handle a full peanut increase (though doctors are hoping that the further along we get and the smaller percentage those full peanuts become, his body will acclimate.)

I am also bummed.

DISAPPOINTMENT 

We are once again behind where we "should be".

If all went well last time, he would be up-dosing to 4 peanuts, and while tomorrow's dose is just a half a peanut lower than the 4, it is causing us to push off graduation date by another week.

Yet again.

(If I count from the beginning everything that caused us to lose a week of progress- reactions, vacation, snowstorms, illnesses, holidays- we are now 16 weeks 'behind' where we would have been had it been a completely smooth journey.).

I am also sooooo proud of my boy and his optimism and his 'go get 'em' attitude.

PRIDE. JOY.

I am so proud that he is still chugging along and he will not allow anything to bring him down! He truly is my hero.

JOY- that we continue upwards
ANGER- that we fell behind
SADNESS- that we are not where most others are by this point
DISGUST- FU Mylan!
FEAR- uh, yeah, big time!

Right now the dominant feel, is fear, because after all this up-dose is higher than the one that caused his last reaction.

But there is one 'feel' that doesn't live in Riley's brain (if you haven't seen INSIDE OUT, then what are you waiting for????) and that is

BRAVERY/COURAGE/DETERMINATION/HOPE.

Because we are not giving up. We may feel all the feels, especially that fear, but we have the courage to do it anyway.

After all hope is the only thing that is stronger than fear. And so we will try again.