What happened?
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| About to up-dose to 4.5 peanuts.... or so he thought |
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.
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| About to eat 4 peanuts |
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| 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.
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!!!!
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| 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.
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.
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